Greetings,
People with fibromyalgia will relate to this one instantly... "You reach over to take something, grab it successfully and then, in the process knock something over on the way back." Next think you know someone is accusing you of being clumsy, and admittedly the failure here could be related to this. One thing I have noticed however is that this is not improved by FM.
The post which follows is a little personal as it relates to something which plagued me while I was a child and has only gotten worse thanks to the fibromyalgia. I am talking about being clumsy, about attempting something and then for some inexplicable reason your hands or whatever do not do what they are supposed to do and a mess is made. Sure everyone has their days where things are not going right, but for some of us it is systemic.
As a child my hand-eye coordination was horrible, so much so that I was sent to a physical therapist in order to improve this situation. It helped, but I can tell you that it had only been through lots and lots of work repeating actions and being very careful about things that it has improved. This is one of those times where playing console and other games really has helped me. Well, just as things were looking up FM, arrived to haunt my days.
Now I have days where I feel like I am back in the body of that clumsy little child. Things go wrong, I knock things over, I make a mess at times where something seems simple. Sometimes for me it is an achievement to get through a day without me knocking something over or spilling something or something similar. On these days I have to be especially careful. I suspect that this has something to do with neurons not firing or something or other all I know is that it is bloody annoying and really frustrating.
So, some of my regular readers are going to ask me, "But you fence, how can you achieve this with such an issue?" Practice, practice, practice. Oh, yeah, and some days where stuff just goes wrong and I get hit lots. Learning new skills for me takes a long time, and a lot of going over the same thing again, and again, and again. Needless to say with the time that I have had fencing, I have had a lot of time to do this.
So, I have two points to make with regard to this:
1) If you have FM you may not actually be as clumsy as you think you are, you may just be having one of those days where the "brain fog" travels in to a more physical situation. We have issues with nerves and so forth don't be too surprised if it is this rather than you just being clumsy.
2) For those who do not have FM. Stop. Think. Is this person just having a bad day? Is there an issue which you cannot see which may be going on? Please try not to point out the clumsy bits and incidences and make too much of a deal about them, they are probably having a hard enough time on their own, and are probably more frustrated than you are.
In my own case, I know that things are going to take work. I know that I will have days where things are going to be annoying as hell. So I figure that I will do as I usually do, work through it. Work on it, and try not to beat up on myself too much when stuff happens.
Cheers,
Henry.
Thursday, December 12, 2013
Friday, December 6, 2013
The Future
Greetings,
Just a really short one...
Recently I had a crisis of the mind. I had serious considerations as to whether or not I was going to remove this blog from the internet. For all my avid readers, you will be glad to hear that I have decided to leave it where it is in order that information presented can still be used by those who find it interesting and/or useful to them. I have thoughts that I may make future posts on here, should I get inspired at the time, however these entries will be sporadic to put it politely. I thank all of my kind readers for their support of this blog and I hope that I will find something suitably inspiring to put on here again, at least sometime in the future.
Cheers,
Henry.
Just a really short one...
Recently I had a crisis of the mind. I had serious considerations as to whether or not I was going to remove this blog from the internet. For all my avid readers, you will be glad to hear that I have decided to leave it where it is in order that information presented can still be used by those who find it interesting and/or useful to them. I have thoughts that I may make future posts on here, should I get inspired at the time, however these entries will be sporadic to put it politely. I thank all of my kind readers for their support of this blog and I hope that I will find something suitably inspiring to put on here again, at least sometime in the future.
Cheers,
Henry.
Tuesday, October 29, 2013
Onward and Upward...
Greetings,
It has been a while since I wrote anything here and the last was a little bit "doom and gloom" for my liking so I will be aiming at changing the tempo a little and lifting the things up a bit. So, there will be some updates with the way things are going, as per usual, and then I will just have to see what I end up with writing towards the end, so good luck to both of us.
News: I have specialists, most of whom do not want to see me until next year. Awesome. Renal specialist wants to keep an eye on things but is for the most part happy with the way things are going. Respiratory specialist is happy with the way things are going so does not want to see me until next year. Endocrine/Bone specialist does not want to see me for at least two years. Hepatology specialist gets seen in a couple of days time and I do not think that there will be much new news there. So the methotrexate is getting increased to combat the sarcoid in my liver... not really that much difference to tell you the truth.
As for the lower abdominal pain, it seems to be on the retreat for the most part. There was some free fluid floating around there, or so the CT Scan said, but it seems to be settling itself out. Sure, bits of pain here and there still, but hell, it is only pain and I am pretty used to that. I am thinking that at the current rate that one should be off my list in a couple of weeks. I will be taking the CT to show the Hepatology people just to keep them informed and see if they have any ideas, I am not expecting much really.
Other news: I have my first official training day for my new fencing school this weekend. As of this weekend it really is a reality. This is one of those life-long dream things happening finally for me. It is just the first step on a much longer path and I am really looking forward to it I can tell you. The big part of this will really get going early next year. I have mentioned this school previously in other posts so I will not go on with it much.... alright just a bit.
Ever since I was diagnosed with fibromyalgia I have been looking for a job or something similar which would fit the random schedule which the FM tends to deal me. I figured it had to be something that I loved, but also something which could be managed around myself and my issues. "Normal" jobs just did not seem to fit the bill as it was always someone else's timetable, rather than one modified to my needs. I love my fencing, as anyone who knows me will tell you, addicted would be putting it mildly. So I figured if I could combine the "owner-operator" and "love of fencing thing" then I would be set. Looks like things are headed well in the right direction I can tell you.
I figure that the first thing a person with FM needs is something to get them out of bed in the morning. This has to be something which you love and just cannot think of a better thing to be doing. For me it is my fencing, or researching fencing, or doing something with regard to fencing. Go out and find what that thing is for you. It does not matter how small it is, or even what it is, if it gets you out of bed and makes you feel good that is a path to a better life.
Other people try and motivate us, unfortunately because they are not us they can not understand what is going on with us. It does not matter how close the person is, or even if they have the same condition, it is a personal thing. We can do our best to explain what is going on but something will always get lost in translation. So, the best place for the motivation to come from is within you. This is really the same for everyone, chronic illness or not, self-motivation is much stronger than any motivation an external source can provide. Find something that will motivate you from within and you will be surprised what you can achieve.
In my case my love of fencing motivates me and does a lot for my pain levels. I do not feel as uncomfortable, even on my worst days, when I am doing something with regard to my chosen passion. The focus required for what I do takes away from the focus on the pain, and as a result improves how I feel. Sure there are days where all I can do is research and read about it, but those are days in which I store up knowledge for the days when I can pick up my sword and do it. There are even days when I am lethargic about going to training or a tournament, once I put my armour on and pick up my sword and get going, those lethargic thoughts seem to blend away. Sure on a rough day I do not move as smoothly as I would like, and I sure pay for it afterward, but the hours with a sword in my hand are more than enough reward for me.
Find your passion, find your motivation, and go onward and upward. You may be surprised where you find yourself in the future and what you can achieve when you apply all of yourself to it. All you have to do is start.
Cheers,
Henry.
It has been a while since I wrote anything here and the last was a little bit "doom and gloom" for my liking so I will be aiming at changing the tempo a little and lifting the things up a bit. So, there will be some updates with the way things are going, as per usual, and then I will just have to see what I end up with writing towards the end, so good luck to both of us.
News: I have specialists, most of whom do not want to see me until next year. Awesome. Renal specialist wants to keep an eye on things but is for the most part happy with the way things are going. Respiratory specialist is happy with the way things are going so does not want to see me until next year. Endocrine/Bone specialist does not want to see me for at least two years. Hepatology specialist gets seen in a couple of days time and I do not think that there will be much new news there. So the methotrexate is getting increased to combat the sarcoid in my liver... not really that much difference to tell you the truth.
As for the lower abdominal pain, it seems to be on the retreat for the most part. There was some free fluid floating around there, or so the CT Scan said, but it seems to be settling itself out. Sure, bits of pain here and there still, but hell, it is only pain and I am pretty used to that. I am thinking that at the current rate that one should be off my list in a couple of weeks. I will be taking the CT to show the Hepatology people just to keep them informed and see if they have any ideas, I am not expecting much really.
Other news: I have my first official training day for my new fencing school this weekend. As of this weekend it really is a reality. This is one of those life-long dream things happening finally for me. It is just the first step on a much longer path and I am really looking forward to it I can tell you. The big part of this will really get going early next year. I have mentioned this school previously in other posts so I will not go on with it much.... alright just a bit.
Ever since I was diagnosed with fibromyalgia I have been looking for a job or something similar which would fit the random schedule which the FM tends to deal me. I figured it had to be something that I loved, but also something which could be managed around myself and my issues. "Normal" jobs just did not seem to fit the bill as it was always someone else's timetable, rather than one modified to my needs. I love my fencing, as anyone who knows me will tell you, addicted would be putting it mildly. So I figured if I could combine the "owner-operator" and "love of fencing thing" then I would be set. Looks like things are headed well in the right direction I can tell you.
I figure that the first thing a person with FM needs is something to get them out of bed in the morning. This has to be something which you love and just cannot think of a better thing to be doing. For me it is my fencing, or researching fencing, or doing something with regard to fencing. Go out and find what that thing is for you. It does not matter how small it is, or even what it is, if it gets you out of bed and makes you feel good that is a path to a better life.
Other people try and motivate us, unfortunately because they are not us they can not understand what is going on with us. It does not matter how close the person is, or even if they have the same condition, it is a personal thing. We can do our best to explain what is going on but something will always get lost in translation. So, the best place for the motivation to come from is within you. This is really the same for everyone, chronic illness or not, self-motivation is much stronger than any motivation an external source can provide. Find something that will motivate you from within and you will be surprised what you can achieve.
In my case my love of fencing motivates me and does a lot for my pain levels. I do not feel as uncomfortable, even on my worst days, when I am doing something with regard to my chosen passion. The focus required for what I do takes away from the focus on the pain, and as a result improves how I feel. Sure there are days where all I can do is research and read about it, but those are days in which I store up knowledge for the days when I can pick up my sword and do it. There are even days when I am lethargic about going to training or a tournament, once I put my armour on and pick up my sword and get going, those lethargic thoughts seem to blend away. Sure on a rough day I do not move as smoothly as I would like, and I sure pay for it afterward, but the hours with a sword in my hand are more than enough reward for me.
Find your passion, find your motivation, and go onward and upward. You may be surprised where you find yourself in the future and what you can achieve when you apply all of yourself to it. All you have to do is start.
Cheers,
Henry.
Thursday, October 3, 2013
New Amazing Diet... Lose 4kg in 1 week...
Greetings,
No, I am not going to try and sell you anything, but I bet it got your attention. One thing is true, however, I have lost 4kg in a week, and I can tell you it was not voluntary. I have been having some issues with my lower abdomen, went to the doctor found out that I had a "torted epiploic appendage". Yup, a little bit of my large intestine got twisted. In order to relive this you get put on a liquid diet, it gives the bowels a rest and allows the body to figure itself out. Once I could put up with but this twice around business is ridiculous. More lower abdominal pain, another liquid diet for a week. Oh, and it seems MS Contin does not agree with me anymore, another pain-killer off my list, side-effect of that was worse than the pain itself.
In other news one week ago today I had a liver biopsy. Essentially get a large needle push it through the chest wall, hit the liver get a sample and your done, except for the having to lay on your back for six hours. Oh, yeah, and the screaming agony once the sedative and pain-killers wear off. Needless to say this one woke the FM up for a big visit and has been telling me about it ever since. I am hoping to be back to my usual self in a week.
Oops, I forgot, my latest dose of lower abdominal pain piggy-backed itself on the liver biopsy, just for some added pain, and I got the results for the biopsy... sarcoid in the liver it would seem. Not happy. Hopefully more news to hand later.
On the more "good news" side of things the aberrations in my kidney functions seem to have settled. I officially have kidneys that work at 75% capacity. Not seeing the specialist there for a year, unless things go "funny" again with them. The bone doctor says that the osteoporosis is on the retreat and he does not want to see me for two years, which is excellent.
Well, things sure have not been boring around here the past month or so. I am hoping to keep more up to date, though I do not like my chances. I will when I can. Anyway, I am hoping that you have had a less exciting time than I have, at least in the same manner.
Cheers,
Henry.
No, I am not going to try and sell you anything, but I bet it got your attention. One thing is true, however, I have lost 4kg in a week, and I can tell you it was not voluntary. I have been having some issues with my lower abdomen, went to the doctor found out that I had a "torted epiploic appendage". Yup, a little bit of my large intestine got twisted. In order to relive this you get put on a liquid diet, it gives the bowels a rest and allows the body to figure itself out. Once I could put up with but this twice around business is ridiculous. More lower abdominal pain, another liquid diet for a week. Oh, and it seems MS Contin does not agree with me anymore, another pain-killer off my list, side-effect of that was worse than the pain itself.
In other news one week ago today I had a liver biopsy. Essentially get a large needle push it through the chest wall, hit the liver get a sample and your done, except for the having to lay on your back for six hours. Oh, yeah, and the screaming agony once the sedative and pain-killers wear off. Needless to say this one woke the FM up for a big visit and has been telling me about it ever since. I am hoping to be back to my usual self in a week.
Oops, I forgot, my latest dose of lower abdominal pain piggy-backed itself on the liver biopsy, just for some added pain, and I got the results for the biopsy... sarcoid in the liver it would seem. Not happy. Hopefully more news to hand later.
On the more "good news" side of things the aberrations in my kidney functions seem to have settled. I officially have kidneys that work at 75% capacity. Not seeing the specialist there for a year, unless things go "funny" again with them. The bone doctor says that the osteoporosis is on the retreat and he does not want to see me for two years, which is excellent.
Well, things sure have not been boring around here the past month or so. I am hoping to keep more up to date, though I do not like my chances. I will when I can. Anyway, I am hoping that you have had a less exciting time than I have, at least in the same manner.
Cheers,
Henry.
Thursday, September 19, 2013
An Open Letter to Politicians
Greetings,
The message which follows is not the usual thing that I put up on my blog here. This is one which has something to do with fibromyalgia in a slanted sort of way, but more directly this is a small political statement which I think I need to get out of my system. I will return you all to your usual reading shortly. What follows is an open letter to all politicians be they local, state or national parliamentarians.
"A man of the people, for the people."
Dear Politicians,
When you give your great election speeches you claim that you are talking about serving the members of your various electorates. You claim that you are serving our country in our best interests. You claim that you are looking out for the people that you represent. I would challenge you all with regard to this one and now truly stand up for the people of your electorates.
The only person who votes whether or not you get a pay rise is you and your fellow politicians. I as a member of an electorate, and the people in general do not get a say as to whether you allow this to happen. The only way that we can make an impact upon these decisions is to approach you en mass in some form or another to make our grievances known. The only time that your positions are threatened by anything that you may or may not have done is once every four years.
I challenge you that next time the question of a pay rise comes up in your parliamentary discussions that you stand against this. Ask yourself whether you really need this pay rise, or whether there could be a place where this money could go which would truly benefit the members of your electorates. There are people out there who are in dire straits due to their financial situations and a boost at this troubled time for them would be a great boost to them. This is your chance for you to truly be "a man of the people, for the people" as your position would indicate that you are.
Yours sincerely,
Henry Walker.
The message which follows is not the usual thing that I put up on my blog here. This is one which has something to do with fibromyalgia in a slanted sort of way, but more directly this is a small political statement which I think I need to get out of my system. I will return you all to your usual reading shortly. What follows is an open letter to all politicians be they local, state or national parliamentarians.
"A man of the people, for the people."
Dear Politicians,
When you give your great election speeches you claim that you are talking about serving the members of your various electorates. You claim that you are serving our country in our best interests. You claim that you are looking out for the people that you represent. I would challenge you all with regard to this one and now truly stand up for the people of your electorates.
The only person who votes whether or not you get a pay rise is you and your fellow politicians. I as a member of an electorate, and the people in general do not get a say as to whether you allow this to happen. The only way that we can make an impact upon these decisions is to approach you en mass in some form or another to make our grievances known. The only time that your positions are threatened by anything that you may or may not have done is once every four years.
I challenge you that next time the question of a pay rise comes up in your parliamentary discussions that you stand against this. Ask yourself whether you really need this pay rise, or whether there could be a place where this money could go which would truly benefit the members of your electorates. There are people out there who are in dire straits due to their financial situations and a boost at this troubled time for them would be a great boost to them. This is your chance for you to truly be "a man of the people, for the people" as your position would indicate that you are.
Yours sincerely,
Henry Walker.
Tuesday, September 3, 2013
Not Much to Write... Kinda
Greetings,
I have been looking at this blog a little and realised that it has been a while since I wrote anything, simply because, as indicated by the title I have had not much to write. I could go on with various medical bits and pieces which have been going on, but for the most part they really do not have anything to do with my FM, so not really "on topic" so to speak with regard to it all. However, I will summarise.
Hepatology Clinic - Went along due to some odd readings and findings of blood tests for liver function which were required for taking methotrexate for pulmonary sarcoidosis, which I have discussed previously. Ultrasound done, no answers there. So later this month there will be a liver biopsy. Joy... not.
Respiratory Clinic - Things going quite well here, sarcoidosis is clearing up nicely. I am hoping to have this one done and dusted in the next six months or so. Might be another year, but I am hoping not. I am guessing that my lungs are about 90% fixed again. This I am quite happy with.
Renal Clinic - Kidneys doing much the same as the liver, odd readings and so forth. More blood tests to come nothing major here to worry about. The messing with the medication is the thing that is annoying me with this one, off my anti-inflammatories so my knees are giving me hell of late. Of course the specialist's recommendation for this was a referral to an orthopedic surgeon, kinda scary in some ways. I would prefer back on the meds. Have to see what happens here.
Bone Clinic - Previously diagnosed with osteoporosis of a moderate level. This is also on its way out. Have had a Body Mass Density scan, this is more of an update to make sure everything is proceeding as it should be.
So I am calling this two and a half out of four issues being solved to some degree. The irritating thought of a fifth specialist kinda bothers me though. I figure I should keep some sort of record of what is going on here. Helps me keep track of what I am doing. Of course four specialists means lots of appointments here and there and lots of running around. You combine this with my various projects and it makes a person who could be sitting on the couch doing nothing, quite a busy person. Of course the sitting on the couch thing is just not me, so it is much less of a surprise.
Needless to say I spend most of the time ignoring all of this business because it could be easy for a person to get down about it all, and sure, sometimes I do. However I have found that doing stuff which you enjoy also helps a lot. Keep your mind on the good stuff and push the other to one side until it needs dealing with. No time for me to be miserable, I have things to do.
Cheers,
Henry.
I have been looking at this blog a little and realised that it has been a while since I wrote anything, simply because, as indicated by the title I have had not much to write. I could go on with various medical bits and pieces which have been going on, but for the most part they really do not have anything to do with my FM, so not really "on topic" so to speak with regard to it all. However, I will summarise.
Hepatology Clinic - Went along due to some odd readings and findings of blood tests for liver function which were required for taking methotrexate for pulmonary sarcoidosis, which I have discussed previously. Ultrasound done, no answers there. So later this month there will be a liver biopsy. Joy... not.
Respiratory Clinic - Things going quite well here, sarcoidosis is clearing up nicely. I am hoping to have this one done and dusted in the next six months or so. Might be another year, but I am hoping not. I am guessing that my lungs are about 90% fixed again. This I am quite happy with.
Renal Clinic - Kidneys doing much the same as the liver, odd readings and so forth. More blood tests to come nothing major here to worry about. The messing with the medication is the thing that is annoying me with this one, off my anti-inflammatories so my knees are giving me hell of late. Of course the specialist's recommendation for this was a referral to an orthopedic surgeon, kinda scary in some ways. I would prefer back on the meds. Have to see what happens here.
Bone Clinic - Previously diagnosed with osteoporosis of a moderate level. This is also on its way out. Have had a Body Mass Density scan, this is more of an update to make sure everything is proceeding as it should be.
So I am calling this two and a half out of four issues being solved to some degree. The irritating thought of a fifth specialist kinda bothers me though. I figure I should keep some sort of record of what is going on here. Helps me keep track of what I am doing. Of course four specialists means lots of appointments here and there and lots of running around. You combine this with my various projects and it makes a person who could be sitting on the couch doing nothing, quite a busy person. Of course the sitting on the couch thing is just not me, so it is much less of a surprise.
Needless to say I spend most of the time ignoring all of this business because it could be easy for a person to get down about it all, and sure, sometimes I do. However I have found that doing stuff which you enjoy also helps a lot. Keep your mind on the good stuff and push the other to one side until it needs dealing with. No time for me to be miserable, I have things to do.
Cheers,
Henry.
Thursday, August 15, 2013
SHDA or Dreams Continued....
Greetings,
In my last post I mentioned something of a fencing school that I was creating. This has been a long process and one that I have talked and talked about rather than actually doing anything about. Well, the doing is now happening in a big way. I figured I should give a little more detail.
First of all, keeping with the FM focus of the blog, the idea of the school was to create myself a job which was suited to my condition. The advantage of this is that the only boss I have to worry about is myself, and my wife if things go really silly. Fencing in various forms has kept me moving for many years and now forms a major part of my motivation. This project allows me to do something which I love, something which is good for me, and just maybe turn it into something I *might* make some money off (I am starting this off as a non-profit organisation so money is a future thing). I figure that the best thing for a person to do is to find something that they love and see if they can make something of that.
The School of Historical Defence Arts (SHDA) is a martial arts school focusing on the application of Historical European Martial Arts (HEMA) for the purposes of practical application in the gaining of efficiency in combat. This is not merely following the instructions found in the manuals as the plays depict but applying this to more practical situations against some sort of antagonist.
The school, as part of the process of learning and understanding the manuals, undertakes in-depth investigations of period manuals taking into account not only their martial applications but also those aspects of courtesy which are appropriate to the period and situation. This investigation focused on the practical application of the information found in the manuals to combative situations, but taking into account those other aspects significant to the study and also to the martial art. While the manuals will primarily be the focus of the teachers, students will be encouraged to have some interest in the manuals and involve themselves in similar study.
Well, that was a cheat. The above two paragraphs are taken straight from our information sheet. However it does describe pretty well the intention of the school and what I want to do with it. You will notice that this is focused at historical fencing rather than sport fencing. Big difference here I am telling you. The biggest difference being that one is sport and the other is martial art. The Facebook page is here: http://www.facebook.com/SchoolofHistoricalDefenseArts. The school is based in Brisbane, Australia, however I am fully willing to feed any interest in it. I can be contacted by e-mail about the school at shdacontact@gmail.com.
Cheers,
Henry.
In my last post I mentioned something of a fencing school that I was creating. This has been a long process and one that I have talked and talked about rather than actually doing anything about. Well, the doing is now happening in a big way. I figured I should give a little more detail.
First of all, keeping with the FM focus of the blog, the idea of the school was to create myself a job which was suited to my condition. The advantage of this is that the only boss I have to worry about is myself, and my wife if things go really silly. Fencing in various forms has kept me moving for many years and now forms a major part of my motivation. This project allows me to do something which I love, something which is good for me, and just maybe turn it into something I *might* make some money off (I am starting this off as a non-profit organisation so money is a future thing). I figure that the best thing for a person to do is to find something that they love and see if they can make something of that.
The School of Historical Defence Arts (SHDA) is a martial arts school focusing on the application of Historical European Martial Arts (HEMA) for the purposes of practical application in the gaining of efficiency in combat. This is not merely following the instructions found in the manuals as the plays depict but applying this to more practical situations against some sort of antagonist.
The school, as part of the process of learning and understanding the manuals, undertakes in-depth investigations of period manuals taking into account not only their martial applications but also those aspects of courtesy which are appropriate to the period and situation. This investigation focused on the practical application of the information found in the manuals to combative situations, but taking into account those other aspects significant to the study and also to the martial art. While the manuals will primarily be the focus of the teachers, students will be encouraged to have some interest in the manuals and involve themselves in similar study.
Well, that was a cheat. The above two paragraphs are taken straight from our information sheet. However it does describe pretty well the intention of the school and what I want to do with it. You will notice that this is focused at historical fencing rather than sport fencing. Big difference here I am telling you. The biggest difference being that one is sport and the other is martial art. The Facebook page is here: http://www.facebook.com/SchoolofHistoricalDefenseArts. The school is based in Brisbane, Australia, however I am fully willing to feed any interest in it. I can be contacted by e-mail about the school at shdacontact@gmail.com.
Cheers,
Henry.
Wednesday, July 24, 2013
Some Dreams Do Come True, But...
Greetings,
There are things that we all want out of life. There are things that we dream about and wish that we could have. There are some things which we cannot have and there are some which we can have. The question with regard to all of them is what are you willing to pay to get there? This entry describes something which has happened recently, which I will get to, and I will tell how I got there. However, it also will be used to see what you can do with some effort.
For many years, ever since I managed to get some experience and some students of my own, I have dreamed about running my own fencing school. This is a dream which I knew was one which was always on the outer limits of what would be possible due to many different factors. But it is one which I have thought about and talked about much. Indeed my immediate family has heard me talk about this dream a lot, and so have some of my students. I knew that this was on the outer limits due to many different factors and this is one of the reasons why it took me so long to do anything real about it.
Sure I had plans for schools many years ago, much of the documentation has been rolled into other endeavours of a similar nature, but much less long-lasting. The reason for this is because these smaller endeavours were easy and never really required much more of me than what I was doing already. So within the SCA, I have had some schools which have grown and developed. Some of these collapsed because they were too big to survive as they were, but achieved their goals. Some collapsed due to internal frictions and misunderstandings of what was required. However, as I have said these were small projects in essence. They did, however lay the foundations for what would happen later on.
If you have a dream that you want to come true, regardless of what it is, you need to put some effort into it in one way or another. Even the dream of winning millions the lotto requires you to buy at least one ticket to be in the draw. You have to be in it to win it, as has been said many times. Of course it also means that there is the chance that it will not work out, so there is the chance of failure. It is this which keeps many away, and I think what prevented me from going outside and doing what the school needed to be "real". Treat your failures as learning experiences and you will find that you can continue. This is what the failure of previous schools has taught me, and it is information that I will use.
Effort on its own will get you places, but it may not be where you want to go. You need a goal, a direction, and a plan. The goal is the end-point, the direction gives focus to your effort, and your plan guides this direction, each one is important. For some, they need to put these down on paper, for others they only need them in their heads. What I can tell you is that while the essential goal will remain the same plans will change. Plans usually change on the information given by failures or intelligences to lead you away from failures.
In my case the goal was the school, which I had for ages. The direction, well I had some to choose from, and the plan, well that was rather flexible due to the options available. In my case, what I needed was a couple of like-minded friends to really get the ball rolling and push me along a bit. They both know who they are, and they have my greatest thanks.
The school was designed to explore elements of western martial arts which were not available to practice under the current regime of the Society for Creative Anachronism (SCA). Now, some explanation. I will remain a member of the SCA as I have friends in that organisation and I still have things to give the organisation, however this school allows me to practice other things and investigate more. Also there are some out there who like the idea of some of the practices within the SCA, specifically the Guild of Defence, who are not interested in adopting personas or putting on period attire. Thus this is for them also as some of the structure and many of the teaching practices are the same as the Guild. This is the goal, in essence.
The direction was chosen much for me due to very external factors, primarily finances. The school will at least start as a non-profit organisation due to the current financial climate and available financial resources, however should the situation present itself, the school can and will move to a business platform, but this is for the future. So direction in this part was chosen, it was for similar reasons that the plan was modified.
The result, well let me just say that I have the final planning elements and collection of students and moneys to be made, but my dream has come true. Due to the approval given for insurance through the Australasian Living History Federation, I will be running my own school for western martial arts. So I can honestly say, that dreams do come true. Where I go from here, well it is one of those things that only the future can tell.
Cheers,
Henry.
There are things that we all want out of life. There are things that we dream about and wish that we could have. There are some things which we cannot have and there are some which we can have. The question with regard to all of them is what are you willing to pay to get there? This entry describes something which has happened recently, which I will get to, and I will tell how I got there. However, it also will be used to see what you can do with some effort.
For many years, ever since I managed to get some experience and some students of my own, I have dreamed about running my own fencing school. This is a dream which I knew was one which was always on the outer limits of what would be possible due to many different factors. But it is one which I have thought about and talked about much. Indeed my immediate family has heard me talk about this dream a lot, and so have some of my students. I knew that this was on the outer limits due to many different factors and this is one of the reasons why it took me so long to do anything real about it.
Sure I had plans for schools many years ago, much of the documentation has been rolled into other endeavours of a similar nature, but much less long-lasting. The reason for this is because these smaller endeavours were easy and never really required much more of me than what I was doing already. So within the SCA, I have had some schools which have grown and developed. Some of these collapsed because they were too big to survive as they were, but achieved their goals. Some collapsed due to internal frictions and misunderstandings of what was required. However, as I have said these were small projects in essence. They did, however lay the foundations for what would happen later on.
If you have a dream that you want to come true, regardless of what it is, you need to put some effort into it in one way or another. Even the dream of winning millions the lotto requires you to buy at least one ticket to be in the draw. You have to be in it to win it, as has been said many times. Of course it also means that there is the chance that it will not work out, so there is the chance of failure. It is this which keeps many away, and I think what prevented me from going outside and doing what the school needed to be "real". Treat your failures as learning experiences and you will find that you can continue. This is what the failure of previous schools has taught me, and it is information that I will use.
Effort on its own will get you places, but it may not be where you want to go. You need a goal, a direction, and a plan. The goal is the end-point, the direction gives focus to your effort, and your plan guides this direction, each one is important. For some, they need to put these down on paper, for others they only need them in their heads. What I can tell you is that while the essential goal will remain the same plans will change. Plans usually change on the information given by failures or intelligences to lead you away from failures.
In my case the goal was the school, which I had for ages. The direction, well I had some to choose from, and the plan, well that was rather flexible due to the options available. In my case, what I needed was a couple of like-minded friends to really get the ball rolling and push me along a bit. They both know who they are, and they have my greatest thanks.
The school was designed to explore elements of western martial arts which were not available to practice under the current regime of the Society for Creative Anachronism (SCA). Now, some explanation. I will remain a member of the SCA as I have friends in that organisation and I still have things to give the organisation, however this school allows me to practice other things and investigate more. Also there are some out there who like the idea of some of the practices within the SCA, specifically the Guild of Defence, who are not interested in adopting personas or putting on period attire. Thus this is for them also as some of the structure and many of the teaching practices are the same as the Guild. This is the goal, in essence.
The direction was chosen much for me due to very external factors, primarily finances. The school will at least start as a non-profit organisation due to the current financial climate and available financial resources, however should the situation present itself, the school can and will move to a business platform, but this is for the future. So direction in this part was chosen, it was for similar reasons that the plan was modified.
The result, well let me just say that I have the final planning elements and collection of students and moneys to be made, but my dream has come true. Due to the approval given for insurance through the Australasian Living History Federation, I will be running my own school for western martial arts. So I can honestly say, that dreams do come true. Where I go from here, well it is one of those things that only the future can tell.
Cheers,
Henry.
Monday, July 15, 2013
Some Things I Have Learned Having Fibromyalgia
Greetings,
This post was inspired by one made by my sister. Ironically, I think I have written a lot of this separately in different blog articles, oh well...
1. Make a choice fight or don't. You can crawl up into a ball and reduce what you do. Or you can stand up and fight and keep or expand what you can. One of these is easy but leads down a much more restricted path, the other will be much more difficult but the benefit will be a much more involved life. This will require activity and it will take time. Needless to say I am a fighter.
2. You are in it for the long-haul. There are not quick-fixes for this one. It is not something you can go to a doctor/surgeon/specialist and then days/months/years down the track it is all fixed. This is one which is going to stick around for the rest of your life. So you need to think of the long-term rather than the short-term, and this means the long-term effects of what you are doing with yourself (See "1").
3. You will have to explain what fibromyalgia is to people a lot. Giving a medical definition will be a waste of time so the best thing is to give a general idea of what the symptoms are like. I tend to describe FM as the worst elements of arthritis and chronic fatigue.
4. People will not understand the pain you experience, even others with fibromyalgia. Everybody's pain is different and not everyone will have the same symptoms as you. Even if they do have the exact same symptoms as you the pain will be difficult to describe. This goes for people in the medical profession as well.
5. You will get asked where does it hurt, a lot. Being able to pin-point where you have pain is a great advantage, for the most part you will not. In response to this question for the most part it would be easier to ask where doesn't it hurt, though that can change at a moment's notice. On a pain diagram it is easier sometimes to simply circle the whole thing, or colour the lot in.
6. You will have to explain your existence a lot. People will not understand how you can do somethings and not others. This is one I get asked a lot. However, do not feel you need to explain yourself, for some people it won't matter what you say, they will never understand and they will never believe you. These people are best to be left behind as they will always second-guess you.
7. Don't be afraid to push your limits. If you want to extend yourself then you need to challenge your own boundaries. You will be surprised about what you can accomplish.
8. Expect to fail every now and then. When you take the advice in "7" you will find that your boundaries are sometimes more restrictive than you thought. The important thing is not to see the failure as the end. Get up, brush yourself off and have another go, and another, and another until you do get where you want to be.
9. Take a break. Everybody needs them. Your body will tell you when to take the break one way or another, but most often it will tell you by causing you pain. In my case it is usually after I hit the bottom, but I do rest.
10. Expect some people to walk away. This is because they cannot understand what you are going through and this frightens them. It is during these times that you will find people who are really your friends.
11. Some people will never believe you. This is regardless of what you tell them or what evidence you present. These people will always think that there is nothing wrong and it is all a show. Best advice for these people is to stay away from them as best you can.
12. Find a good doctor. I do not mean a doctor with lots of qualifications and recommendations. I mean a doctor who you can deal with. A doctor who really wants to understand and help you with what is going on with you. More to the point a doctor who actually does understand that there is something going wrong. If you have to spend your time convincing your doctor that there is something wrong and it is not all in your head you need to find a better doctor.
13. It may get better, or it may get worse. This is one of the frightening things about FM, you may get worse or not, you don't know. The only thing to do in this situation is to do what you can help to prevent it from getting worse. It may not work but give it your best and you never know it might get better or at least stabilise things (See "1").
14. Expect the random. What? How can you expect the random? Expect that sometimes your fibromyalgia will come up and bite you on the butt when you least expect it, and most often when you least want it to. In this you need to be prepared to decline, to reschedule, and to miss out. Sometimes it is better to sit out and miss things than to push yourself too far. Sometimes it will be worth it to push yourself, pick your times and your battles. In my case I have missed events of various kinds in order to do this, it is not easy to do.
15. Do not be afraid to be a burden, but do not expect to be one. There are times when you will need help and when it is offered, take it. However, do not expect people to do things for you just because of your condition, you need to give them a reason to want to care. You need to be giving something back for people to want to go out of their way for you. I pull my weight where I can, or at least try to and try to give something back where I can from what I can do.
16. Ask for help, it is not a sign of weakness. There are times when you will need help, do not be afraid to ask for it. Do not expect people to intuitively know when you need help with things. You will need to ask for help, do not simply expect it to happen without asking. More to the point be grateful of the help, especially because it most often comes when you most need it. One of the hardest lessons to learn for me, and to tell the truth, I am still learning it.
17. Do not expect help, even from those you should. There are times, and most times, when you will have to do this thing on your own. This means you are just going to have to battle through yourself and do what you can when you can. There will be times when you will expect help and it simply will not happen, sometimes even when you ask.
18. People have their own lives. They can not always be around to help you or be there for you. You need some self-sufficiency. Sometimes people's lives will be more important than helping you with yours, this is something you simply have to accept and move on.
19. If you want to do something, do it. Find what you want to do and see if you can. Give things a go, you will only find out if you have a go. You never know you just might surprise yourself. Of course, keep your expectations real at the same time. Find a project, intellectual or physical (the best kinds have both) and go for it.
20. Don't believe everything that you read. You will find things which are contradictory to what has been written about the condition. In my case I have one word "caffeine". Supposedly it causes problems with fibromyalgia and thus I should stay away from it. I have found it useful. It helps cut through the "fog", it obviously wakes me up, and it gets the blood pumping. All of these things I have found to be a benefit rather than a problem.
21. You are much stronger than you know. You can battle through the hardest parts of this condition. You always have the strength to go on. There is always light at the end of the tunnel. Some days getting out of bed is a hardship, but I do it anyway. Small achievement I know, but a victory nonetheless. If you find these victories in your life you will find that you can do a lot of things and each achievement will spur you on to the next. Getting out of bed gets the ball rolling. Sure it is hard, and it is easy to go back, but always look forward. Get one thing done today and it is an achievement, you never know you could be aimed at two, or more tomorrow.
22. Look for understanding not sympathy. The former is more difficult to achieve than the latter and is worth more. Through understanding a person can then begin to understand when you need help and how this is best delivered. Sympathy is like a pat on the head, nice but does not get you anywhere. Understanding is a long-term project usually only undertaken by those who really care and want to know. Needless to say if you go looking for it you can get a lot of sympathy, but understanding is a lot harder to achieve. Oh, and after a while too much sympathy gained off a single individual can turn into contempt, which is exactly what you don't want.
23. Insomnia can be both a curse and a gift. In the long-term insomnia is not good for you and will cause you problems, however it can allow you to achieve things as well. A short dose of insomnia in one particular instance allowed me to get further in a project than I would have otherwise. Use the over-active brain to do something with. Write it all down, even if it is gobbledigook.
24. Medication needs to be managed. Well-managed medication can be a boon. Side-effects can be a killer so these need to be managed as well. More to the point you need to realise when you actually need it. I am horrible with regard to this as concerns pain-killers. I hate taking them due to the side-effects and my fear of becoming dependent on them. I will do anything I can to avoid having to take a pain-killer. I take them when I need them, and not before. The rest of my medication is, for the most part, pretty good, even if it is somewhat limiting on certain aspects.
25. There is always another twist. There is always something around the corner that you will not expect. In my case this was sarcoidosis and osteoporosis. Dealing with both, things are looking good. These things will complicate what is going on. For the most part they do not even have to be directly associated with the FM, but they will have their effects. Look at it simply as another puzzle to solve or manage and move on.
26. Your life is a puzzle. Yes, I am a walking rubix cube. There are many moving parts and the bits do not always fit the way that they are supposed to. The fibromyalgia will complicate things for you and the symptoms will be random a lot of the time. However, we all have triggers which we can do our best to avoid where we can. In my case I look at it all as a puzzle and making all of the bits fit properly results in me having a better life than before. It may not be perfect, but at least it will be better.
27. Being positive does help. Whether it is something chemical or just an outlook on life, being positive about things helps. If you are positive there is no hurdle which you cannot tackle. In my case I accept things for what they are and move on. Curling up in a ball and hiding only works so well for so long. Eventually you have to get up and do something. Worrying about stuff you can do nothing about does nothing but waste energy on things you could be doing something about.
28. Take greater joy in the things you can do than those you can't. There are things we all cannot do anymore thanks to FM. In my case I can no longer write or type for as long nor as fast as I used to be able to. So I focus more on the things that I can do, especially the ones where the ability to do this shocks people. Big one for me is fencing and this one not only shocks friends and family but also some in the medical profession as well.
29. You will get frustrated and annoyed. I am usually a reasonably calm and quiet sort of person. This illness drives me to distraction, especially when it says "Not today." for anything. In these times you need to accept that you are actually frustrated and annoyed, but also realise that while something may not be going according to plan, there are things you can do about it. I denied for the longest time that I had depression and I do have my ups and downs with regard to it. For the most part the cause of this can be firmly laid at the feet of fibromyalgia. It makes things really difficult at times but you have to accept these things as they are and then move through them. So you can't do what you planned today, push it to one side and do something else; then try again tomorrow.
30. Take hold of something which is yours and hold on to it. Pick one thing, one thing that you love doing and do your very best to hold on to that thing. For me that one thing is Renaissance martial arts, it is something I was doing before fibromyalgia and it is the one thing that keeps me going. When I mention fencing this is what I am talking about, not sport fencing but the fencing of the Renaissance period. I do it, I read about it, I research it. This is the one thing that keeps me going and the one thing I will never give in. Essentially you need something you love to challenge you and give you the victories to keep going.
Well, I have come up with 30 of them. No doubt I will think of some more later on and these I will either add to this in some form or some other method of recording them. You will notice that some of these will repeat themselves, well, that is just the way it is. Different lessons in each one of them though.
Cheers,
Henry.
This post was inspired by one made by my sister. Ironically, I think I have written a lot of this separately in different blog articles, oh well...
1. Make a choice fight or don't. You can crawl up into a ball and reduce what you do. Or you can stand up and fight and keep or expand what you can. One of these is easy but leads down a much more restricted path, the other will be much more difficult but the benefit will be a much more involved life. This will require activity and it will take time. Needless to say I am a fighter.
2. You are in it for the long-haul. There are not quick-fixes for this one. It is not something you can go to a doctor/surgeon/specialist and then days/months/years down the track it is all fixed. This is one which is going to stick around for the rest of your life. So you need to think of the long-term rather than the short-term, and this means the long-term effects of what you are doing with yourself (See "1").
3. You will have to explain what fibromyalgia is to people a lot. Giving a medical definition will be a waste of time so the best thing is to give a general idea of what the symptoms are like. I tend to describe FM as the worst elements of arthritis and chronic fatigue.
4. People will not understand the pain you experience, even others with fibromyalgia. Everybody's pain is different and not everyone will have the same symptoms as you. Even if they do have the exact same symptoms as you the pain will be difficult to describe. This goes for people in the medical profession as well.
5. You will get asked where does it hurt, a lot. Being able to pin-point where you have pain is a great advantage, for the most part you will not. In response to this question for the most part it would be easier to ask where doesn't it hurt, though that can change at a moment's notice. On a pain diagram it is easier sometimes to simply circle the whole thing, or colour the lot in.
6. You will have to explain your existence a lot. People will not understand how you can do somethings and not others. This is one I get asked a lot. However, do not feel you need to explain yourself, for some people it won't matter what you say, they will never understand and they will never believe you. These people are best to be left behind as they will always second-guess you.
7. Don't be afraid to push your limits. If you want to extend yourself then you need to challenge your own boundaries. You will be surprised about what you can accomplish.
8. Expect to fail every now and then. When you take the advice in "7" you will find that your boundaries are sometimes more restrictive than you thought. The important thing is not to see the failure as the end. Get up, brush yourself off and have another go, and another, and another until you do get where you want to be.
9. Take a break. Everybody needs them. Your body will tell you when to take the break one way or another, but most often it will tell you by causing you pain. In my case it is usually after I hit the bottom, but I do rest.
10. Expect some people to walk away. This is because they cannot understand what you are going through and this frightens them. It is during these times that you will find people who are really your friends.
11. Some people will never believe you. This is regardless of what you tell them or what evidence you present. These people will always think that there is nothing wrong and it is all a show. Best advice for these people is to stay away from them as best you can.
12. Find a good doctor. I do not mean a doctor with lots of qualifications and recommendations. I mean a doctor who you can deal with. A doctor who really wants to understand and help you with what is going on with you. More to the point a doctor who actually does understand that there is something going wrong. If you have to spend your time convincing your doctor that there is something wrong and it is not all in your head you need to find a better doctor.
13. It may get better, or it may get worse. This is one of the frightening things about FM, you may get worse or not, you don't know. The only thing to do in this situation is to do what you can help to prevent it from getting worse. It may not work but give it your best and you never know it might get better or at least stabilise things (See "1").
14. Expect the random. What? How can you expect the random? Expect that sometimes your fibromyalgia will come up and bite you on the butt when you least expect it, and most often when you least want it to. In this you need to be prepared to decline, to reschedule, and to miss out. Sometimes it is better to sit out and miss things than to push yourself too far. Sometimes it will be worth it to push yourself, pick your times and your battles. In my case I have missed events of various kinds in order to do this, it is not easy to do.
15. Do not be afraid to be a burden, but do not expect to be one. There are times when you will need help and when it is offered, take it. However, do not expect people to do things for you just because of your condition, you need to give them a reason to want to care. You need to be giving something back for people to want to go out of their way for you. I pull my weight where I can, or at least try to and try to give something back where I can from what I can do.
16. Ask for help, it is not a sign of weakness. There are times when you will need help, do not be afraid to ask for it. Do not expect people to intuitively know when you need help with things. You will need to ask for help, do not simply expect it to happen without asking. More to the point be grateful of the help, especially because it most often comes when you most need it. One of the hardest lessons to learn for me, and to tell the truth, I am still learning it.
17. Do not expect help, even from those you should. There are times, and most times, when you will have to do this thing on your own. This means you are just going to have to battle through yourself and do what you can when you can. There will be times when you will expect help and it simply will not happen, sometimes even when you ask.
18. People have their own lives. They can not always be around to help you or be there for you. You need some self-sufficiency. Sometimes people's lives will be more important than helping you with yours, this is something you simply have to accept and move on.
19. If you want to do something, do it. Find what you want to do and see if you can. Give things a go, you will only find out if you have a go. You never know you just might surprise yourself. Of course, keep your expectations real at the same time. Find a project, intellectual or physical (the best kinds have both) and go for it.
20. Don't believe everything that you read. You will find things which are contradictory to what has been written about the condition. In my case I have one word "caffeine". Supposedly it causes problems with fibromyalgia and thus I should stay away from it. I have found it useful. It helps cut through the "fog", it obviously wakes me up, and it gets the blood pumping. All of these things I have found to be a benefit rather than a problem.
21. You are much stronger than you know. You can battle through the hardest parts of this condition. You always have the strength to go on. There is always light at the end of the tunnel. Some days getting out of bed is a hardship, but I do it anyway. Small achievement I know, but a victory nonetheless. If you find these victories in your life you will find that you can do a lot of things and each achievement will spur you on to the next. Getting out of bed gets the ball rolling. Sure it is hard, and it is easy to go back, but always look forward. Get one thing done today and it is an achievement, you never know you could be aimed at two, or more tomorrow.
22. Look for understanding not sympathy. The former is more difficult to achieve than the latter and is worth more. Through understanding a person can then begin to understand when you need help and how this is best delivered. Sympathy is like a pat on the head, nice but does not get you anywhere. Understanding is a long-term project usually only undertaken by those who really care and want to know. Needless to say if you go looking for it you can get a lot of sympathy, but understanding is a lot harder to achieve. Oh, and after a while too much sympathy gained off a single individual can turn into contempt, which is exactly what you don't want.
23. Insomnia can be both a curse and a gift. In the long-term insomnia is not good for you and will cause you problems, however it can allow you to achieve things as well. A short dose of insomnia in one particular instance allowed me to get further in a project than I would have otherwise. Use the over-active brain to do something with. Write it all down, even if it is gobbledigook.
24. Medication needs to be managed. Well-managed medication can be a boon. Side-effects can be a killer so these need to be managed as well. More to the point you need to realise when you actually need it. I am horrible with regard to this as concerns pain-killers. I hate taking them due to the side-effects and my fear of becoming dependent on them. I will do anything I can to avoid having to take a pain-killer. I take them when I need them, and not before. The rest of my medication is, for the most part, pretty good, even if it is somewhat limiting on certain aspects.
25. There is always another twist. There is always something around the corner that you will not expect. In my case this was sarcoidosis and osteoporosis. Dealing with both, things are looking good. These things will complicate what is going on. For the most part they do not even have to be directly associated with the FM, but they will have their effects. Look at it simply as another puzzle to solve or manage and move on.
26. Your life is a puzzle. Yes, I am a walking rubix cube. There are many moving parts and the bits do not always fit the way that they are supposed to. The fibromyalgia will complicate things for you and the symptoms will be random a lot of the time. However, we all have triggers which we can do our best to avoid where we can. In my case I look at it all as a puzzle and making all of the bits fit properly results in me having a better life than before. It may not be perfect, but at least it will be better.
27. Being positive does help. Whether it is something chemical or just an outlook on life, being positive about things helps. If you are positive there is no hurdle which you cannot tackle. In my case I accept things for what they are and move on. Curling up in a ball and hiding only works so well for so long. Eventually you have to get up and do something. Worrying about stuff you can do nothing about does nothing but waste energy on things you could be doing something about.
28. Take greater joy in the things you can do than those you can't. There are things we all cannot do anymore thanks to FM. In my case I can no longer write or type for as long nor as fast as I used to be able to. So I focus more on the things that I can do, especially the ones where the ability to do this shocks people. Big one for me is fencing and this one not only shocks friends and family but also some in the medical profession as well.
29. You will get frustrated and annoyed. I am usually a reasonably calm and quiet sort of person. This illness drives me to distraction, especially when it says "Not today." for anything. In these times you need to accept that you are actually frustrated and annoyed, but also realise that while something may not be going according to plan, there are things you can do about it. I denied for the longest time that I had depression and I do have my ups and downs with regard to it. For the most part the cause of this can be firmly laid at the feet of fibromyalgia. It makes things really difficult at times but you have to accept these things as they are and then move through them. So you can't do what you planned today, push it to one side and do something else; then try again tomorrow.
30. Take hold of something which is yours and hold on to it. Pick one thing, one thing that you love doing and do your very best to hold on to that thing. For me that one thing is Renaissance martial arts, it is something I was doing before fibromyalgia and it is the one thing that keeps me going. When I mention fencing this is what I am talking about, not sport fencing but the fencing of the Renaissance period. I do it, I read about it, I research it. This is the one thing that keeps me going and the one thing I will never give in. Essentially you need something you love to challenge you and give you the victories to keep going.
Well, I have come up with 30 of them. No doubt I will think of some more later on and these I will either add to this in some form or some other method of recording them. You will notice that some of these will repeat themselves, well, that is just the way it is. Different lessons in each one of them though.
Cheers,
Henry.
Wednesday, July 3, 2013
The End... or at Least of this Chapter
Greetings,
Finally some good news. In continuing with my past two posts I can happily report that I have broken the cycle. I was actually tired when I went to bed and not arguing about going to sleep, well not any more than usual anyway. So it seems that I have found the key or keys...
1. Weather: The old nemesis raises its ugly head again. I suspect that part of my issue sleeping over the past little while has been due to the weather and it causing my joints to play up. Thus pain, thus difficulty in sleeping.
2. Exercise: Went for a walk yesterday evening and I think it tired my body out enough that I could sleep. So it would seem that there is a necessity for tiredness of brain and body for my sleep to happen.
Well, one of these I can do something about and do on a regular basis. The weather, well that is not something that I really can do something about, but at least I will get some fore-warning. Weather being crappy = me feeling crappy. I am glad that I at least have some answers even if I do not have them all.
Cheers,
Henry.
Finally some good news. In continuing with my past two posts I can happily report that I have broken the cycle. I was actually tired when I went to bed and not arguing about going to sleep, well not any more than usual anyway. So it seems that I have found the key or keys...
1. Weather: The old nemesis raises its ugly head again. I suspect that part of my issue sleeping over the past little while has been due to the weather and it causing my joints to play up. Thus pain, thus difficulty in sleeping.
2. Exercise: Went for a walk yesterday evening and I think it tired my body out enough that I could sleep. So it would seem that there is a necessity for tiredness of brain and body for my sleep to happen.
Well, one of these I can do something about and do on a regular basis. The weather, well that is not something that I really can do something about, but at least I will get some fore-warning. Weather being crappy = me feeling crappy. I am glad that I at least have some answers even if I do not have them all.
Cheers,
Henry.
Tuesday, July 2, 2013
The Continuing Saga...
Greetings,
About this time last night or whatever it was I wrote about my sleeping issue. Well, looks like it is continuing, much to my disgust. I mentioned I may be back with regard to this one, and here I am. So here's another ramble...
So, I relented last night and took the medication to induce me to go to sleep. That was about 3:20am or thereabouts. I figured a late to bed and early get up would fix things. Not the case unfortunately as I am here again. Why did I relent you ask? In a word, pain. My head started to throb and various bits and pieces of my body were on their way to locking up, so staying up was not a good idea. Unfortunately I think I am headed for the same last night.
Let me say "Thanks" to those who took some time to have a chat with me on FB last night. It was greatly appreciated. Nice to have a chat and fill in some hours while I figured out what I should do. I have almost no doubt that the same will happen tonight. At least I have nailed one of the reasons and it is pain. Weather-related pain. The wet weather and the cold are most definitely getting to me again. Not happy about that. Expected it, but still not happy.
Of course due to the crappy weather I was unable to go to training tonight also. So the exercise thing went out the window so the joints have been sedentary. I hope that Wednesday clears up enough for me to go to training that night. I really think that the two doses of exercise that I get at training really do help. I think it is partially due to the enjoyment, partially due to the increased heart-rate, and partially due to the inner-warmth generated due to the exercise. Whatever the cause/effect, it works and I need training at least twice a week for this to work. For those who are new to the blog, that would be fencing training.
Best idea I ever had with regard to my FM was taking up fencing some 20 years ago. I have not looked back. It provides me with motivation, exercise and more importantly something to focus my mind on. Sure I play some console games as well and that helps, but the holistic approach to the study of fencing, studying and doing it, fulfills both the mind and the body. There is so much to learn and that is awesome. I am not saying that it is the magic key, but I think it really helps. What helps is that I have had multiple medical practitioners agree with this assessment. If you can, maybe you should give it a go.
Anyway, the brain has pretty much run out of things to write at the moment. I will probably follow the same procedure as last night, go on FB and have a chat until the body says "No more" again. I know it is not a solution, but heck, it seems to be the thing to do at the moment.
Cheers,
Henry.
About this time last night or whatever it was I wrote about my sleeping issue. Well, looks like it is continuing, much to my disgust. I mentioned I may be back with regard to this one, and here I am. So here's another ramble...
So, I relented last night and took the medication to induce me to go to sleep. That was about 3:20am or thereabouts. I figured a late to bed and early get up would fix things. Not the case unfortunately as I am here again. Why did I relent you ask? In a word, pain. My head started to throb and various bits and pieces of my body were on their way to locking up, so staying up was not a good idea. Unfortunately I think I am headed for the same last night.
Let me say "Thanks" to those who took some time to have a chat with me on FB last night. It was greatly appreciated. Nice to have a chat and fill in some hours while I figured out what I should do. I have almost no doubt that the same will happen tonight. At least I have nailed one of the reasons and it is pain. Weather-related pain. The wet weather and the cold are most definitely getting to me again. Not happy about that. Expected it, but still not happy.
Of course due to the crappy weather I was unable to go to training tonight also. So the exercise thing went out the window so the joints have been sedentary. I hope that Wednesday clears up enough for me to go to training that night. I really think that the two doses of exercise that I get at training really do help. I think it is partially due to the enjoyment, partially due to the increased heart-rate, and partially due to the inner-warmth generated due to the exercise. Whatever the cause/effect, it works and I need training at least twice a week for this to work. For those who are new to the blog, that would be fencing training.
Best idea I ever had with regard to my FM was taking up fencing some 20 years ago. I have not looked back. It provides me with motivation, exercise and more importantly something to focus my mind on. Sure I play some console games as well and that helps, but the holistic approach to the study of fencing, studying and doing it, fulfills both the mind and the body. There is so much to learn and that is awesome. I am not saying that it is the magic key, but I think it really helps. What helps is that I have had multiple medical practitioners agree with this assessment. If you can, maybe you should give it a go.
Anyway, the brain has pretty much run out of things to write at the moment. I will probably follow the same procedure as last night, go on FB and have a chat until the body says "No more" again. I know it is not a solution, but heck, it seems to be the thing to do at the moment.
Cheers,
Henry.
Monday, July 1, 2013
Sleep time... What?
Greetings,
Well, I figured I should get around to writing this one sooner rather than later before it passed my mind. It is on that immortal subject of sleep. Unlike my usual posts which are usually organised by thought and so forth this one will not. I also do not guarantee that it is not going to be a lot of rambling.
Anyhow....
For the most part and "usually", if there is such a thing, I get tired, I take my evening medication and I go to bed. Unfortunately this is not always the case. I would like to cite the last couple of days as a prime example. I have been getting up at my usual time, doing what I do in a day. Then it comes to midnight, my average and usual bedtime, and I am not tired. On a usual day I am usually trying to stay awake, past couple of days it has been quite a bit of the opposite.
I, as a rule, do not like having to take medication in order to get to sleep. I did this for a while and my I got a little dependent on them. As I said, usually I get tired, I take my medication and I go to bed. More recently it has been take medication to make me tired and then go to bed, which is not the way that I like it to work. Now I do apologise to any of my readers who are familiar with the concept of insomnia, especially where it is associated with fibromyalgia. For me this is not a general thing that happens.
Only times when I have trouble getting to sleep is: when I have slept during the day, for an extended period of time; got something in my subconscious that is bugging me; I am particularly concerned about something in my life; had too much caffeine (yeah right, ask anyone who knows me well about this one); or the weather is so bad that I am in pain enough that I cannot sleep without pain-killers, another one of my pet-hates. Sure the weather has been really crappy of late and I have been in a bit of pain, but no more than my "usual".
So, here am I sitting, for the first time actually writing on the subject which is actually going wrong for me currently. My usual is to leave it until I can compose my thoughts properly and then write it "properly". Cold weather usually cramps my hands and causes me issues, did so this morning, it was actually my first symptom of FM that I got. Of course my original doctor put it off to "growing pains" or "being too tall and thin" or some other "easily-explainable" or "untreatable, besides by anti-inflammatories" reason. Anyway back on subject-ish. One of the reasons for removing the "regularity" from this blog was for a better insight into what is going on "now" for me. Well, just for a change it is happening.
My issue at hand is that I should be tired enough that I want to take my medications and go to bed. But I am not so I am not going to. This time, I think I am actually going to stay awake and see just how long it will actually take me to feel like sleeping. I would not be surprised if I end up doing some research or end up on Facebook. I am sure that there must be someone awake in the world wanting a chat.
Anyway, I do not know if I will update this blog and keep you all filled in on this. I will make no guarantees on that one. So I will see how things go. You never know you may get another out of me quite soon. Or at least sooner than I would usually.
Cheers,
Henry.
Well, I figured I should get around to writing this one sooner rather than later before it passed my mind. It is on that immortal subject of sleep. Unlike my usual posts which are usually organised by thought and so forth this one will not. I also do not guarantee that it is not going to be a lot of rambling.
Anyhow....
For the most part and "usually", if there is such a thing, I get tired, I take my evening medication and I go to bed. Unfortunately this is not always the case. I would like to cite the last couple of days as a prime example. I have been getting up at my usual time, doing what I do in a day. Then it comes to midnight, my average and usual bedtime, and I am not tired. On a usual day I am usually trying to stay awake, past couple of days it has been quite a bit of the opposite.
I, as a rule, do not like having to take medication in order to get to sleep. I did this for a while and my I got a little dependent on them. As I said, usually I get tired, I take my medication and I go to bed. More recently it has been take medication to make me tired and then go to bed, which is not the way that I like it to work. Now I do apologise to any of my readers who are familiar with the concept of insomnia, especially where it is associated with fibromyalgia. For me this is not a general thing that happens.
Only times when I have trouble getting to sleep is: when I have slept during the day, for an extended period of time; got something in my subconscious that is bugging me; I am particularly concerned about something in my life; had too much caffeine (yeah right, ask anyone who knows me well about this one); or the weather is so bad that I am in pain enough that I cannot sleep without pain-killers, another one of my pet-hates. Sure the weather has been really crappy of late and I have been in a bit of pain, but no more than my "usual".
So, here am I sitting, for the first time actually writing on the subject which is actually going wrong for me currently. My usual is to leave it until I can compose my thoughts properly and then write it "properly". Cold weather usually cramps my hands and causes me issues, did so this morning, it was actually my first symptom of FM that I got. Of course my original doctor put it off to "growing pains" or "being too tall and thin" or some other "easily-explainable" or "untreatable, besides by anti-inflammatories" reason. Anyway back on subject-ish. One of the reasons for removing the "regularity" from this blog was for a better insight into what is going on "now" for me. Well, just for a change it is happening.
My issue at hand is that I should be tired enough that I want to take my medications and go to bed. But I am not so I am not going to. This time, I think I am actually going to stay awake and see just how long it will actually take me to feel like sleeping. I would not be surprised if I end up doing some research or end up on Facebook. I am sure that there must be someone awake in the world wanting a chat.
Anyway, I do not know if I will update this blog and keep you all filled in on this. I will make no guarantees on that one. So I will see how things go. You never know you may get another out of me quite soon. Or at least sooner than I would usually.
Cheers,
Henry.
Tuesday, June 11, 2013
Fighting Back: Getting Fit
Greetings,
The one big thing that I have noticed with regard to my fibromyalgia is that much of the pain issues and joint issues in my case can be related to activity levels. I have found that if I do not get regular exercise of some form or another I begin to slow down and then the issues increase. In talking to some people with the same condition I have found that some are the same, but many do not know where to start or where to go. For the most part this process starts internally.
The first thing that you have to do is to make the choice to get up and do something. I have found that a moderate level of fitness enables me to do more than if I had been doing nothing. You have choices you can stay in the condition that you are and not do anything about it or you can try something new or different which may or may not work. In my impression, some sort of progression is better than nothing at all, indeed the chance of some sort of progression is even better. The thing is that this needs to be an active choice, not a maybe, but something that you are going to do.
Next thing is that this process is not easy, especially if you are starting off from an essentially sedentary state. It will take time and it will take effort on your part. This is one of those "do it yourself things", people can help and advise but you have to do it. It is easy to become discouraged in this process as the progression is not immediate and it will take time. The thing to do in these situations is to look forward to the future. Set yourself a goal to go for and attack it.
So the decision has been made to get more mobile and get some level of fitness. The next question is where to start. My advice is to start simple, this means not going trying to jog a couple of miles, but doing something like putting some walking shoes on and going for a walk. It does not even have to be particularly long to start with. You need to build up some endurance first and making a mess of yourself is not the way to do things.
Two things to figure out at this point in time, what can you do, and what do you enjoy doing? What sort of activities of an active nature can you do? What sort of activities do you enjoy doing? Pick one of these to start with and go and have a go. In my case I had always been interested in fencing, so that is what I had a go at. This may be a little to active for some to start with. As I have said, pick something you can do and will want to do.
Start easy and build upwards. If you have chosen the walking option try to increase the length of the walk or increase the speed. In time you can even increase both. The important thing here is that you need to set yourself little goals and once you hit them, pick something a little more difficult. As you increase your activity, your fitness and endurance will also increase, but you need to take the time that it will require.
When you pick an activity go for something which is low impact. Hence the reason why I suggested walking rather than jogging. This activity is something that you want to be able to maintain for the long-term as it is a long-term result that you are looking for. Low impact activities are kinder to your body and easier to deal with than high impact activities. They also have a higher chance of maintenance in the long-term.
With this in place you have another choice to make. The choice here is whether to continue or not. If you are getting some benefit from the activity it would be unadvised for you to stop the activity. Now, we are all going to have periods where we simply cannot do the activity, the important thing is that after this period that you get back to it in order not to lose the progress that you have made.
A level of fitness can assist with reduction in joint issues if it is approached in the correct fashion. The trick here is to find something that you are going to want to do, thus you will be enthusiastic about doing it. Something which is not interesting to you will be easy to give up and this will set you back. Pick something which is easy to start with and build up. Once you have increased your fitness you can pick something which is more active. Put simply, get moving and stay that way.
By getting fit we can fight back.
Cheers,
Henry.
The one big thing that I have noticed with regard to my fibromyalgia is that much of the pain issues and joint issues in my case can be related to activity levels. I have found that if I do not get regular exercise of some form or another I begin to slow down and then the issues increase. In talking to some people with the same condition I have found that some are the same, but many do not know where to start or where to go. For the most part this process starts internally.
The first thing that you have to do is to make the choice to get up and do something. I have found that a moderate level of fitness enables me to do more than if I had been doing nothing. You have choices you can stay in the condition that you are and not do anything about it or you can try something new or different which may or may not work. In my impression, some sort of progression is better than nothing at all, indeed the chance of some sort of progression is even better. The thing is that this needs to be an active choice, not a maybe, but something that you are going to do.
Next thing is that this process is not easy, especially if you are starting off from an essentially sedentary state. It will take time and it will take effort on your part. This is one of those "do it yourself things", people can help and advise but you have to do it. It is easy to become discouraged in this process as the progression is not immediate and it will take time. The thing to do in these situations is to look forward to the future. Set yourself a goal to go for and attack it.
So the decision has been made to get more mobile and get some level of fitness. The next question is where to start. My advice is to start simple, this means not going trying to jog a couple of miles, but doing something like putting some walking shoes on and going for a walk. It does not even have to be particularly long to start with. You need to build up some endurance first and making a mess of yourself is not the way to do things.
Two things to figure out at this point in time, what can you do, and what do you enjoy doing? What sort of activities of an active nature can you do? What sort of activities do you enjoy doing? Pick one of these to start with and go and have a go. In my case I had always been interested in fencing, so that is what I had a go at. This may be a little to active for some to start with. As I have said, pick something you can do and will want to do.
Start easy and build upwards. If you have chosen the walking option try to increase the length of the walk or increase the speed. In time you can even increase both. The important thing here is that you need to set yourself little goals and once you hit them, pick something a little more difficult. As you increase your activity, your fitness and endurance will also increase, but you need to take the time that it will require.
When you pick an activity go for something which is low impact. Hence the reason why I suggested walking rather than jogging. This activity is something that you want to be able to maintain for the long-term as it is a long-term result that you are looking for. Low impact activities are kinder to your body and easier to deal with than high impact activities. They also have a higher chance of maintenance in the long-term.
With this in place you have another choice to make. The choice here is whether to continue or not. If you are getting some benefit from the activity it would be unadvised for you to stop the activity. Now, we are all going to have periods where we simply cannot do the activity, the important thing is that after this period that you get back to it in order not to lose the progress that you have made.
A level of fitness can assist with reduction in joint issues if it is approached in the correct fashion. The trick here is to find something that you are going to want to do, thus you will be enthusiastic about doing it. Something which is not interesting to you will be easy to give up and this will set you back. Pick something which is easy to start with and build up. Once you have increased your fitness you can pick something which is more active. Put simply, get moving and stay that way.
By getting fit we can fight back.
Cheers,
Henry.
Friday, May 31, 2013
Pain-killers... Oh, How I Loathe Thee.
Greetings,
I need to be a little specific with this topic, and I suspect that this is going to be a little shorter than my usual post. I am going to talk about pain-killers. More to the point I am going to talk about the reasons why I am so disinclined to take them if I can find any other way in which to solve a pain issue. This is probably going to seem a little odd to some.
So, you have a headache. Straight to the medicine cabinet, pop two pills, be they aspirin or paracetamol, and everything is good, right? For most people I would say that this is how things work. So I had a headache last night, with neck pain and back pain. According to the description above it should have been simple, follow the instructions have the pain-killers and be done with it, right? In my case not so easy. This is more than a simple choice to make, in fact it can be quite a bit more complex.
First of all, due to being on methotrexate for sarcoidosis (which is on the retreat I am glad to say) I cannot take aspirin due to the blood-thinning agents in both medications, also I cannot take paracetamol due to the liver issues associated with the combinations. This effectively takes out things like panadol, panadol forte, aspalgin, mersyndol and mersyndol forte. Pretty much all the over the counter stuff is gone, along with some which you can need a prescription for.
What does this leave? This leaves wonderful things like MS Contin, which is a morphine derivative, and Tramadol which is a synthetic drug designed to stop the pain signals to the brain. Or at least these are the two wonderful drugs I have been prescribed in addition to my usual drugs taken for FM. The Tramadol is the main one, but in order to take this I have to make choices.
I don't like taking the MS Contin for obvious reasons, however I can take that whenever I need it as it has no real reactions besides the above to anything else I am on. The Tramadol on the other hand reacts with the anti-depressant that I am on in the evening, so I need to make a choice of one or the other. Not a great choice I can tell you.
In the taking of either of the drugs, I know for a fact that I am going to be have "brain fuzz" for at least 24 hours if not longer. This is like the good old FM fog, i.e. can't think straight, lose track of things and all those wonderful symptoms. The big reason why I really dislike taking the pain-killers. Pain goes away, leaves the disgusting fuzz behind. For the most part I will do anything in order to not take either of them. This includes putting up with the pain, having a warm shower (which helps a surprising amount), going to bed early if it is in the evening (and sometimes during the day, not all that often if I can help it), or just trying not to think about it and working around it.
Of course the other big reason why I do not like taking the pain-killers is because I do not want to end up dependent and upping the doses as my body gets used to them. I do not feel like being dependent on "big-dose" pain-killers at all. The concept of being like this and dependent on them is something that I will avoid as best I can, and if that means I go without, well so be it. Needless to say, I keep my pain levels under reasonable control as best I can, and will put up with the pain for the most part until I can't. Pain-killers for me are a last resort.
Cheers,
Henry.
I need to be a little specific with this topic, and I suspect that this is going to be a little shorter than my usual post. I am going to talk about pain-killers. More to the point I am going to talk about the reasons why I am so disinclined to take them if I can find any other way in which to solve a pain issue. This is probably going to seem a little odd to some.
So, you have a headache. Straight to the medicine cabinet, pop two pills, be they aspirin or paracetamol, and everything is good, right? For most people I would say that this is how things work. So I had a headache last night, with neck pain and back pain. According to the description above it should have been simple, follow the instructions have the pain-killers and be done with it, right? In my case not so easy. This is more than a simple choice to make, in fact it can be quite a bit more complex.
First of all, due to being on methotrexate for sarcoidosis (which is on the retreat I am glad to say) I cannot take aspirin due to the blood-thinning agents in both medications, also I cannot take paracetamol due to the liver issues associated with the combinations. This effectively takes out things like panadol, panadol forte, aspalgin, mersyndol and mersyndol forte. Pretty much all the over the counter stuff is gone, along with some which you can need a prescription for.
What does this leave? This leaves wonderful things like MS Contin, which is a morphine derivative, and Tramadol which is a synthetic drug designed to stop the pain signals to the brain. Or at least these are the two wonderful drugs I have been prescribed in addition to my usual drugs taken for FM. The Tramadol is the main one, but in order to take this I have to make choices.
I don't like taking the MS Contin for obvious reasons, however I can take that whenever I need it as it has no real reactions besides the above to anything else I am on. The Tramadol on the other hand reacts with the anti-depressant that I am on in the evening, so I need to make a choice of one or the other. Not a great choice I can tell you.
In the taking of either of the drugs, I know for a fact that I am going to be have "brain fuzz" for at least 24 hours if not longer. This is like the good old FM fog, i.e. can't think straight, lose track of things and all those wonderful symptoms. The big reason why I really dislike taking the pain-killers. Pain goes away, leaves the disgusting fuzz behind. For the most part I will do anything in order to not take either of them. This includes putting up with the pain, having a warm shower (which helps a surprising amount), going to bed early if it is in the evening (and sometimes during the day, not all that often if I can help it), or just trying not to think about it and working around it.
Of course the other big reason why I do not like taking the pain-killers is because I do not want to end up dependent and upping the doses as my body gets used to them. I do not feel like being dependent on "big-dose" pain-killers at all. The concept of being like this and dependent on them is something that I will avoid as best I can, and if that means I go without, well so be it. Needless to say, I keep my pain levels under reasonable control as best I can, and will put up with the pain for the most part until I can't. Pain-killers for me are a last resort.
Cheers,
Henry.
Wednesday, May 22, 2013
Out of Control
Greetings,
We all like to think that we have some control over ourselves and our surroundings. I can tell you that this is an illusion, it is a comfortable illusion, but an illusion nonetheless. The focus of this article is on the tenuous control that a person with FM has upon their lives and also some ideas I have about getting some more of the control back. Big note with regard to this, each case is individual, some of this may work for you and some of it may not.
There are two elements to the body which will be discussed, the mind and the body. Ironically the one which we think that we have most control of is actually the one which we have least control of and vice versa. With this idea firmly planted, I am going to have a look at some situations which I have been faced with and some of the ways that I deal with various elements in my life.
For those of us who have been living with our condition for some time, the triggers are self-evident and we have grown accustomed to their presence and know the consequences. For those who have been dealing with the condition on the shorter term, my advice is to get a diary and record things, everyday things, and figure out the patterns. The triggers may be mental and the triggers may be physical both have an effect.
In my particular case I hate being tied down and being told that I can't. What this results in is me pushing myself physically a lot. I know that one of my triggers is over-doing things on a particular day. I know for sure that the fibromyalgia will come back and bite me in the arse the next day. I also know that stressful situations will also cause issues for me. These are especially the case where the stress is definitively emotional. Sure getting pissed off raises the endorphins and the adrenalin, however the crash will always come about. The symptoms I have described here are some of my triggers.
Once you know some of your triggers you can start to plan. If an activity causes you to have a flare-up the next day, plan it for a day where you have the next day where you can relax, and expect to. If there is a particular type of weather which causes you issues, which I know is the case for me, watch the weather report and this may help you plan for the next day. Of course there are those times where the FM rears its ugly head without explanation, we still have to deal with these and it is here where the control is seen to be an illusion. The trick here is to do what you can in order to plan. Even if it only helps a little, this is a little more than you had before.
My idea to write this particular post was the result of a particularly bad day on one which I thought was going to be a good one. I got a reasonable amount of sleep, the temperature was reasonable and the weather was reasonably settled. Should have been a good day for me. Did not happen. Before too long the symptoms began to build, shaking in the hands resulting in pain later on. Headache building due to my neck being an issue, and of course the infamous "FM fuzz" which I hate the most. As a result of this I decided that I should write something about what was going on (Obviously not the day I am writing this).
According to all of my "trigger data" it should have been a good day, but things just decided that it was time to go downhill. It was really frustrating for me I can tell you, I had plans for that day and obviously they went out the window. It is this lack of control that is the thing that annoys me the most. Sure we can plan, as indicated above, but the control is something which is very tenuous. For the most part where most other people have predictability, this is lacking in a person with FM. The one big thing that I have noticed with FM is the sharp reduction in control that the condition results in.
Ironically, while the body is the one which reveals the most symptoms in most cases it is the one which is the most out of control. The control over the body is a nice illusion which we all cling to. Sure there are elements of the physical situation which we can control, but there are also those which we simply cannot. The sooner people realise this the better in my opinion. Once they can do this then they can identify those elements which they can control and focus on them.
The mind, your mind, is stronger than you may think. I can point this out relatively easily. There are mental symptoms which will result in physical effects. Perfect example is if someone starts talking about scratching an itch others will more than likely start scratching themselves. In the case of a person with fibromyalgia the effects can be much more wide-spread. In my particular case I find that certain stressful situations can bring on the physical effects of FM. Increasing stress in a situation can cause a my FM to cause me all sorts of problems.
From the other side of things, mental symptoms can also result in mental effects. Being around people who are tired or depressed can result in us being tired or depressed ourselves. Thus within ourselves if we find a particular situation which is tiring we can begin to feel tired. Indeed I have found that if I discuss my condition too much with people highlighting the various issues, some of them can manifest, especially the mental aspects.
So, there are mental symptoms which can create both mental and physical effects. This both tells us the effects which the mind can have upon us, however, it also tells us that we can also control effects through the use of the mind. I have found that through thought processes and active thinking about things I can reduce the effects of my FM on myself. For the most part it is simply telling myself that I do not have the time for the flare-up at that point in time, or more often that I will get through what needs to be done. It is the positive thoughts which can be our allies. You will find that negative thoughts can have negative effects while positive thoughts can have positive effects. The trick, you actually have to believe in what you are telling yourself. If you don't it will not work.
I have previously discussed the idea of triggers and planning. This was mostly focused on the physical aspects of FM, but what should be noted here is that the same can be used against the mental aspects as well. Of course, the same reduction in control is also present and we need to be aware of this.
With regard to the mental aspects of fibromyalgia the biggest shock to my system was when I was diagnosed with depression as a part of my condition. This was quite a shock to me at the time I can tell you. I have since had a thought about it and it is simply the result of being sick for so long. In general I am quite a positive person. I always look for ways around or ways through problems rather than letting them beat me. I personally attribute this positive aspect of my nature as a great asset and assistance to me. It is also the reason why I was so shocked about the diagnosis, and resisted it for a long time. Yes, I am on medication for my depression and it does help. Keeping positive and active I have found is a great asset and has helped significantly with my FM.
The biggest secret in all of this is that while control is an illusion there are aspects which you can control. The secret to this is finding things out and doing things about them. You are stronger than you think you are. You can find ways to deal with the issues that confront you. Your mind is a great weapon. Your positive thoughts about yourself are a great weapon. Do not think that you can win, know you can. Find those things which you can control and use them, especially against those which you can't.
We all like to think that we have some control over ourselves and our surroundings. I can tell you that this is an illusion, it is a comfortable illusion, but an illusion nonetheless. The focus of this article is on the tenuous control that a person with FM has upon their lives and also some ideas I have about getting some more of the control back. Big note with regard to this, each case is individual, some of this may work for you and some of it may not.
There are two elements to the body which will be discussed, the mind and the body. Ironically the one which we think that we have most control of is actually the one which we have least control of and vice versa. With this idea firmly planted, I am going to have a look at some situations which I have been faced with and some of the ways that I deal with various elements in my life.
Triggers and Planning
One of the greatest problems that I find with fibromyalgia is the randomness of the condition, and this is directly related to control and it is here that we can get some control back. We all know that we have triggers which will set our FM off either in the short-term or the long-term. The greatest control that we have is acknowledging these triggers and relating them back to their causes, not their symptoms which we know so well, but their causes.For those of us who have been living with our condition for some time, the triggers are self-evident and we have grown accustomed to their presence and know the consequences. For those who have been dealing with the condition on the shorter term, my advice is to get a diary and record things, everyday things, and figure out the patterns. The triggers may be mental and the triggers may be physical both have an effect.
In my particular case I hate being tied down and being told that I can't. What this results in is me pushing myself physically a lot. I know that one of my triggers is over-doing things on a particular day. I know for sure that the fibromyalgia will come back and bite me in the arse the next day. I also know that stressful situations will also cause issues for me. These are especially the case where the stress is definitively emotional. Sure getting pissed off raises the endorphins and the adrenalin, however the crash will always come about. The symptoms I have described here are some of my triggers.
Once you know some of your triggers you can start to plan. If an activity causes you to have a flare-up the next day, plan it for a day where you have the next day where you can relax, and expect to. If there is a particular type of weather which causes you issues, which I know is the case for me, watch the weather report and this may help you plan for the next day. Of course there are those times where the FM rears its ugly head without explanation, we still have to deal with these and it is here where the control is seen to be an illusion. The trick here is to do what you can in order to plan. Even if it only helps a little, this is a little more than you had before.
The Body
We all have this belief that we are all in full control of our bodies. If this is the case we should be able to raise our immune systems from the inside during flu seasons. If this was the case then things like heart attacks and strokes would be things of the past. The thing is that the body is a complex mechanism which we are still trying to understand. In the case of a person with FM things become even more tricky.My idea to write this particular post was the result of a particularly bad day on one which I thought was going to be a good one. I got a reasonable amount of sleep, the temperature was reasonable and the weather was reasonably settled. Should have been a good day for me. Did not happen. Before too long the symptoms began to build, shaking in the hands resulting in pain later on. Headache building due to my neck being an issue, and of course the infamous "FM fuzz" which I hate the most. As a result of this I decided that I should write something about what was going on (Obviously not the day I am writing this).
According to all of my "trigger data" it should have been a good day, but things just decided that it was time to go downhill. It was really frustrating for me I can tell you, I had plans for that day and obviously they went out the window. It is this lack of control that is the thing that annoys me the most. Sure we can plan, as indicated above, but the control is something which is very tenuous. For the most part where most other people have predictability, this is lacking in a person with FM. The one big thing that I have noticed with FM is the sharp reduction in control that the condition results in.
Ironically, while the body is the one which reveals the most symptoms in most cases it is the one which is the most out of control. The control over the body is a nice illusion which we all cling to. Sure there are elements of the physical situation which we can control, but there are also those which we simply cannot. The sooner people realise this the better in my opinion. Once they can do this then they can identify those elements which they can control and focus on them.
The Mind
A person starts taking about controlling the mind and most people, especially those with a sci-fi brain will automatically start thinking about "mind control", not what I am talking about. I am talking about taking some control of our own minds using our minds, and thus gaining some control over our situation. Sounds a little "fuzzy" in nature, be assured I am not going to start expecting people to light candles and the rest of it, this is something different.The mind, your mind, is stronger than you may think. I can point this out relatively easily. There are mental symptoms which will result in physical effects. Perfect example is if someone starts talking about scratching an itch others will more than likely start scratching themselves. In the case of a person with fibromyalgia the effects can be much more wide-spread. In my particular case I find that certain stressful situations can bring on the physical effects of FM. Increasing stress in a situation can cause a my FM to cause me all sorts of problems.
From the other side of things, mental symptoms can also result in mental effects. Being around people who are tired or depressed can result in us being tired or depressed ourselves. Thus within ourselves if we find a particular situation which is tiring we can begin to feel tired. Indeed I have found that if I discuss my condition too much with people highlighting the various issues, some of them can manifest, especially the mental aspects.
So, there are mental symptoms which can create both mental and physical effects. This both tells us the effects which the mind can have upon us, however, it also tells us that we can also control effects through the use of the mind. I have found that through thought processes and active thinking about things I can reduce the effects of my FM on myself. For the most part it is simply telling myself that I do not have the time for the flare-up at that point in time, or more often that I will get through what needs to be done. It is the positive thoughts which can be our allies. You will find that negative thoughts can have negative effects while positive thoughts can have positive effects. The trick, you actually have to believe in what you are telling yourself. If you don't it will not work.
I have previously discussed the idea of triggers and planning. This was mostly focused on the physical aspects of FM, but what should be noted here is that the same can be used against the mental aspects as well. Of course, the same reduction in control is also present and we need to be aware of this.
With regard to the mental aspects of fibromyalgia the biggest shock to my system was when I was diagnosed with depression as a part of my condition. This was quite a shock to me at the time I can tell you. I have since had a thought about it and it is simply the result of being sick for so long. In general I am quite a positive person. I always look for ways around or ways through problems rather than letting them beat me. I personally attribute this positive aspect of my nature as a great asset and assistance to me. It is also the reason why I was so shocked about the diagnosis, and resisted it for a long time. Yes, I am on medication for my depression and it does help. Keeping positive and active I have found is a great asset and has helped significantly with my FM.
Conclusion
Control is an illusion for the most part, however there are aspects of our lives which we can control. The trick I have found is to have the ammunition to fight the issues which I come across. Finding out my own triggers and planning for what is to come has been a great asset to me in order to gain back some control. Taking control of our own lives and our own conditions can only be an asset to us.The biggest secret in all of this is that while control is an illusion there are aspects which you can control. The secret to this is finding things out and doing things about them. You are stronger than you think you are. You can find ways to deal with the issues that confront you. Your mind is a great weapon. Your positive thoughts about yourself are a great weapon. Do not think that you can win, know you can. Find those things which you can control and use them, especially against those which you can't.
Sunday, May 12, 2013
FM: Without Pictures
Greetings,
So, today (12 May 2013) is Fibromyalgia Awareness Day, who knew right? I am sure that there are some of my readers out there who knew. There is part of the problem. So, rather than my recently frequent ramblings about motivational subjects and various other bits and pieces, I decided it is time to get back "on point" and talk about fibromyalgia. More to the point some important factors which make it such an invisible illness. Pictures.
Who has seen pictures of cancers? Who has seen pictures of broken bones? Who has seen pictures of burst blood vessels resulting in strokes? I am sure that we all have in the media in some form or another. How about this, who has seen a picture of the effect of FM? On an X-ray? On an ultra-sound? I will bet that most have not. This is one of the things that makes FM one of the "invisible illnesses".
We do not have pictures that we can show people to show them the evidence of what is going on with us. In a very visual world this is a problem. We have not shocking pictures to show. People do not see what is going on inside us, so people do not see what is happening, as a result we are invisible. We do have pain, unfortunately the cause is untraceable. We cannot show a broken bone, an inflamed tendon or anything else for that matter so it is hard to say what is going on. More to the point it is hard to have people know what is going on.
What makes it worse is that because we have no pictures, we often find it hard to tell people what is going on. People have a hard time believing in what they cannot see. Because we are not in pain all of the time it does not get seen. When we are in pain due to the previous we get accused of calling attention to ourselves or faking it. Why? Because the cause cannot be seen. Sure people who know us know what is going on, but they have to know us really well to really understand. We fear that there is always the behind closed doors, "I think so-and-so is faking it." is said. Even when there is pain all of the time it is still difficult to see what is going on, so we have the same results.
This is the way it is, so what can we do about it? How many of the people you know have heard of fibromyalgia? How many people you know, know what fibromyalgia is? If you are reading this and have FM, how many of the people that know you understand what you go through? The only way that this is going to change is by making it more visible. We need to tell people who know us what is going on and make them understand what is going on. We need to tell more people about this problem and that it does exist. The least thing that can happen is that one person that you know will better understand you, and that is a start.
So what am I doing? Recently I have decided to make this blog go public. Before it was a more personal thing and was shared here and there. These days I publicise it through Google+ whenever I make a post. I also publicise this blog through Facebook. I encourage you to help me with this and do the same thing, even if you only find one thing helpful or useful or interesting or which hits home to you. Share it. More to the point, if you find others doing the same thing, do the same for them. If you find groups supporting those with FM, publicise them. If you have friends or relations with FM tell them about these sites and groups, it can only help.
Oh, and one more thing, have a great day reader, and thank you for taking your precious time to read this. Your encouragement helps me, and that encouragement helps me write, and I hope that this helps those who read it.
Cheers,
Henry.
So, today (12 May 2013) is Fibromyalgia Awareness Day, who knew right? I am sure that there are some of my readers out there who knew. There is part of the problem. So, rather than my recently frequent ramblings about motivational subjects and various other bits and pieces, I decided it is time to get back "on point" and talk about fibromyalgia. More to the point some important factors which make it such an invisible illness. Pictures.
Who has seen pictures of cancers? Who has seen pictures of broken bones? Who has seen pictures of burst blood vessels resulting in strokes? I am sure that we all have in the media in some form or another. How about this, who has seen a picture of the effect of FM? On an X-ray? On an ultra-sound? I will bet that most have not. This is one of the things that makes FM one of the "invisible illnesses".
We do not have pictures that we can show people to show them the evidence of what is going on with us. In a very visual world this is a problem. We have not shocking pictures to show. People do not see what is going on inside us, so people do not see what is happening, as a result we are invisible. We do have pain, unfortunately the cause is untraceable. We cannot show a broken bone, an inflamed tendon or anything else for that matter so it is hard to say what is going on. More to the point it is hard to have people know what is going on.
What makes it worse is that because we have no pictures, we often find it hard to tell people what is going on. People have a hard time believing in what they cannot see. Because we are not in pain all of the time it does not get seen. When we are in pain due to the previous we get accused of calling attention to ourselves or faking it. Why? Because the cause cannot be seen. Sure people who know us know what is going on, but they have to know us really well to really understand. We fear that there is always the behind closed doors, "I think so-and-so is faking it." is said. Even when there is pain all of the time it is still difficult to see what is going on, so we have the same results.
This is the way it is, so what can we do about it? How many of the people you know have heard of fibromyalgia? How many people you know, know what fibromyalgia is? If you are reading this and have FM, how many of the people that know you understand what you go through? The only way that this is going to change is by making it more visible. We need to tell people who know us what is going on and make them understand what is going on. We need to tell more people about this problem and that it does exist. The least thing that can happen is that one person that you know will better understand you, and that is a start.
So what am I doing? Recently I have decided to make this blog go public. Before it was a more personal thing and was shared here and there. These days I publicise it through Google+ whenever I make a post. I also publicise this blog through Facebook. I encourage you to help me with this and do the same thing, even if you only find one thing helpful or useful or interesting or which hits home to you. Share it. More to the point, if you find others doing the same thing, do the same for them. If you find groups supporting those with FM, publicise them. If you have friends or relations with FM tell them about these sites and groups, it can only help.
Oh, and one more thing, have a great day reader, and thank you for taking your precious time to read this. Your encouragement helps me, and that encouragement helps me write, and I hope that this helps those who read it.
Cheers,
Henry.
Saturday, May 4, 2013
Eclipsed?
Greetings,
The question of goals and successes I have spoken on previously. This more article more points at perceptions of success and how we see them, but also how others see them. This article is pointed at those of us who feel that we have been eclipsed in some way be it in social circles, work or other fields of endeavour.
Have you ever felt eclipsed, like someone was out there taking what should be your glory? Have you ever felt like you have been pushed back into the shadows because someone else is more important than you? Have you felt like that you are not the major person with regard to a topic, and that everyone else's achievements are bigger and more important? Everyone has, you are not alone. This can happen in work, in our private lives, in our work and even in our relationships. It is what you do about it which is important.
First, you need to look at the situation with a critical eye, especially toward yourself. If you can not look at yourself honestly then this process will fail. You need to look at yourself and your achievements honestly. You also need to look at the reason for your achievements and efforts as well as this is also important.
So someone is put ahead of you. Is there a reason for this? Have you put in the same level of effort as the person concerned? If not then this is the first place you should look. Have you really put your heart into what you are doing or are you just doing this because it is expected? This is a question we must look at carefully the expectations other people build must not be more important than our own. Your own goals will always have more strength than the expectations of others, and you will always put more effort into your own goals over other's goals which have been set for you.
Sometimes it feels that we have no choice in what we are doing. The truth is that there is always choice but we just might not like the choices which have been presented to us. This can be especially so with regard to work. If your work is not fulfilling, my suggestion is to find fulfillment in something more social or recreational. There is always somewhere we can find lasting fulfillment, it is simply a matter of finding it.
When you do something you have chosen to do for yourself, not something which has been thrust upon you or expected of you, you will gain more satisfaction in its completion. In many situations this is the only thing that you will get from your efforts as personal goals are just that, personal. The important thing here is that it is your own goal, your own struggle, your own achievement, nothing for anyone to say anything about. Where there are other participants things can become more complicated.
We always compare ourselves against others, either consciously or unconsciously, and regardless we always want to be equal or better than others. This becomes more the case where a particular achievement requires the participation of others. These others can be hurdles to what we want, or they can be seen as fellow participants and a challenge to overcome. Learn what you can from other participants, it can only improve what you are doing in some way.
Most important for ourselves. We need to find things to do that we enjoy, regardless of the other's thoughts. These things need to be constructive rather than destructive in their nature. We need to find things that we want to do and not because someone else said we should or are required to do. We need to find things which we are good at or are willing to put in the work to become good at. We need to find things which we can actually do, there is no point in finding things where the goals are unreachable, thus setting ourselves up for failure. In this we need to be realistic. We need to find things which we want to do, there is no need to fill other's expectations, unless we want to, it is your life live it the way you think best. Most important and above all things...
BE YOURSELF.
Cheers,
Henry.
The question of goals and successes I have spoken on previously. This more article more points at perceptions of success and how we see them, but also how others see them. This article is pointed at those of us who feel that we have been eclipsed in some way be it in social circles, work or other fields of endeavour.
Have you ever felt eclipsed, like someone was out there taking what should be your glory? Have you ever felt like you have been pushed back into the shadows because someone else is more important than you? Have you felt like that you are not the major person with regard to a topic, and that everyone else's achievements are bigger and more important? Everyone has, you are not alone. This can happen in work, in our private lives, in our work and even in our relationships. It is what you do about it which is important.
First, you need to look at the situation with a critical eye, especially toward yourself. If you can not look at yourself honestly then this process will fail. You need to look at yourself and your achievements honestly. You also need to look at the reason for your achievements and efforts as well as this is also important.
So someone is put ahead of you. Is there a reason for this? Have you put in the same level of effort as the person concerned? If not then this is the first place you should look. Have you really put your heart into what you are doing or are you just doing this because it is expected? This is a question we must look at carefully the expectations other people build must not be more important than our own. Your own goals will always have more strength than the expectations of others, and you will always put more effort into your own goals over other's goals which have been set for you.
Sometimes it feels that we have no choice in what we are doing. The truth is that there is always choice but we just might not like the choices which have been presented to us. This can be especially so with regard to work. If your work is not fulfilling, my suggestion is to find fulfillment in something more social or recreational. There is always somewhere we can find lasting fulfillment, it is simply a matter of finding it.
When you do something you have chosen to do for yourself, not something which has been thrust upon you or expected of you, you will gain more satisfaction in its completion. In many situations this is the only thing that you will get from your efforts as personal goals are just that, personal. The important thing here is that it is your own goal, your own struggle, your own achievement, nothing for anyone to say anything about. Where there are other participants things can become more complicated.
We always compare ourselves against others, either consciously or unconsciously, and regardless we always want to be equal or better than others. This becomes more the case where a particular achievement requires the participation of others. These others can be hurdles to what we want, or they can be seen as fellow participants and a challenge to overcome. Learn what you can from other participants, it can only improve what you are doing in some way.
Most important for ourselves. We need to find things to do that we enjoy, regardless of the other's thoughts. These things need to be constructive rather than destructive in their nature. We need to find things that we want to do and not because someone else said we should or are required to do. We need to find things which we are good at or are willing to put in the work to become good at. We need to find things which we can actually do, there is no point in finding things where the goals are unreachable, thus setting ourselves up for failure. In this we need to be realistic. We need to find things which we want to do, there is no need to fill other's expectations, unless we want to, it is your life live it the way you think best. Most important and above all things...
BE YOURSELF.
Cheers,
Henry.
Sunday, April 21, 2013
Doing Nothing
Greetings,
Why is it that as soon as you tell people you are on a Disability Pension, they assume that you sit around doing nothing for the day? Or they start asking questions why and start judging you? In response the first for my particular case, I will present the following post. For the second, I will simply state that several medical professionals and government officials agreed that it would be pointless for me to find work and that it was appropriate that I be placed on the pension. Unless you know my medical history and also have the requisite training of both sets of professionals, you can keep your opinions to yourself (apologies for the small rant). Now on to the important stuff.
Assumptions
In my particular case I do not sit in front of the television or computer playing games or watching videos all day. I feel I have more important things to do with my life. Sure there are days when I do these activities but there is a reason for this and it is the reason that I am on a Disability Pension. However, aside from the things that we all have to do each day, I do keep myself rather occupied. How?Blogs
Including this one I have two other blogs which I work on in order to facilitate the spread of information on various subjects. Aside from this one which is my more personal one and has a general focus on fibromyalgia and what I do to deal with this particular condition, there are two others.One is focused on the exploration of the English language, or to be more precise Elizabethan English it can be found here: http://oldewordes.blogspot.com.au/ This is not required research nor was it required in any other way I decided that it was a subject that I was interested in, so I started to research it. I started this particular investigation in to the language so that at some point in time I would be able to better understand it and even possibly, produce it. How did I become interested in it? Well, that leads on to my third and most popular blog.
The other blog, and my most popular one having: 19,000+ hits, 78 posts and 22 followers who have registered, is about fencing. It is also the blog which I have been writing the longest. It is about fencing, as in swordplay, not methods of keeping properties marked. For the most part I focus on general topics and issues with regard to the subject, but it does tend to reveal my greatest joy which is the research and participation in Western Martial Arts. This reveals something else that I do in order to improve myself, and maintain fitness.
Fencing
So, hopefully I will not have to explain what sort of fencing that I am talking about here as I already have above. If not, go back and read it as I am not explaining it again. Anyway, fencing was something I got into before I was diagnosed and before I started having all of my medical issues which have led me to be on the the Disability Support Pension. I started with foil during my first sojourn to university life and decided that I liked it... a lot.When I found out that the medieval and recreation group, the SCA (Society for Creative Anachronism) did a form of fencing which was historically based, well I was set. I got to combine a physical activity which I was doing in with research into the history of it. Fencing nut plus history nut, throw that in and I did not look back. For the most part at the beginning I was doing it all for myself, this was to change.
Best way to find people to play with is to train them yourself, so I started training people. I was learning new techniques from manuals and all sorts of sources along the way as well. What can I say, but about 15 years later I suspect that I have had in excess of 30, possibly even more, students. There are still more. In fact much of my time is actually spent researching things to teach them so that they improve. Thus along with the blogs, you throw in two or three nights a week of training, and my "wasteful time" gets smaller and smaller I can tell you.
Research
Research is something I do, and I do to keep my wits about me and so I can keep learning things. Best way to stop a brain from stagnating is to research, and this is something that I do. Sure I have mentioned my blogs and the research which is involved with them, and sure, they do take up the highest percentage of what I research, but there are always other subjects which will catch my eye.Occasionally I will get interested due to a film, documentary or something I have read. Crazily enough, one of my lots of research was actually a result of watching my wife play a game, which was historically based. Some of the subjects are not "academically sound" for sure, but research is research. You find something you are interested in and you find more and more stuff about it. Sometimes there is no "final end result", but when you are doing it for yourself there is no problem here at all.
Conclusion
To say that I spend most of my time doing nothing is, quite frankly, insulting. Sure I do not have a regular job like most people do, but it sure as hell does not mean that I am sitting at home doing nothing. I can tell you that is the complete opposite of what I am doing most of the time. I have blogs, I have fencing and I have research to keep me occupied. Sure I do spend some time in front of the television playing games or watching movies, but I ask this "Who doesn't?" No one works all of the time.Sure what I do is not paid and does not fill the usual work hours, but I think that what I do fills a function. I can tell you that there would be a lot of people who would notice its absence. In fact there are. I have been told so. Indeed if I decided that I should start being completely ruthless with my time and how much it is worth I would have a lot less students than I do now, and a lot less friends too.
Before you make an assumption about what a person does or does not do and about how they do or do not spend their time, think. Decide whether you would like the same assumption made about you. If not, don't do it. Find out what they really do, you never know you might find something and someone interesting and worthwhile.
Cheers,
Henry.
Sunday, April 14, 2013
Good News/Bad News
Greetings,
This is going to be one of those good news/bad news situations. I am thinking that this post will not be particularly long or involved, and I do apologise if the brevity of this post puts people off. In a nut-shell this one is more of a status update rather than the sort of discussion that I usually like.
Good News...
Went and saw the respiratory specialist at the hospital who gave me the good old once over with regard to things. Had a listen to my chest, looked at latest blood tests, all that sort of stuff. Seems that things are tracking really well to a good conclusion at this stage. The medication is working and the sarcoidosis is gradually clearing from my lungs.
Bad News...
First, why is it the case that the good news always has to come with some bad news? Why can it not be just all good news? So, sarcoidosis is an auto-immune disease. What this means is that my immune systems have been working over time and unfortunately attacking my own body. What this also means is that I have been blissfully immune to the flu and all like bugs while I have had the condition in its full-fledged state. In order to get rid of the sarcoidosis I am on medications which pummel the crap out of my immune system. Unfortunately this means that I am now prone to every cough and cold all over the place, how do I know this? Got my first cold this weekend, and it sucks. Needless to say it is taking its sweet time to bugger off again.
Just to complicate things a little more. I was out doing the dutiful taking the garbage out job a couple of evenings ago. It was wet, I was in thongs/flip-flops whatever. Well the step was a little wet and a little slick. I put my foot on it and was not stable. Off the edge of the step. The foot did not land correctly and resulting is a twisted ankle. Not impressed I can tell you on that one. So I have had the ankle strapped and elevated for the past couple of days and finally it is beginning to come good. I mean I did not even twist it that badly. You combine fibromyalgia with bad weather and a damaged joint and everything is not good.
Anyway enough of that rot. The ankle is improving, the cold is gradually disappearing. It all just means that I am going to have to be a little more careful with myself. Dumb thing is that I thought I was being careful. All I can say is that both the cold and the ankle had better be fixed by tomorrow as I have training to go to and I do not like missing them. The fencing really does help my FM thanks to the regular relatively gentle movement. Hopefully my next post will be more interesting and less of an update. Or at least a good update.
Cheers,
Henry.
This is going to be one of those good news/bad news situations. I am thinking that this post will not be particularly long or involved, and I do apologise if the brevity of this post puts people off. In a nut-shell this one is more of a status update rather than the sort of discussion that I usually like.
Good News...
Went and saw the respiratory specialist at the hospital who gave me the good old once over with regard to things. Had a listen to my chest, looked at latest blood tests, all that sort of stuff. Seems that things are tracking really well to a good conclusion at this stage. The medication is working and the sarcoidosis is gradually clearing from my lungs.
Bad News...
First, why is it the case that the good news always has to come with some bad news? Why can it not be just all good news? So, sarcoidosis is an auto-immune disease. What this means is that my immune systems have been working over time and unfortunately attacking my own body. What this also means is that I have been blissfully immune to the flu and all like bugs while I have had the condition in its full-fledged state. In order to get rid of the sarcoidosis I am on medications which pummel the crap out of my immune system. Unfortunately this means that I am now prone to every cough and cold all over the place, how do I know this? Got my first cold this weekend, and it sucks. Needless to say it is taking its sweet time to bugger off again.
Just to complicate things a little more. I was out doing the dutiful taking the garbage out job a couple of evenings ago. It was wet, I was in thongs/flip-flops whatever. Well the step was a little wet and a little slick. I put my foot on it and was not stable. Off the edge of the step. The foot did not land correctly and resulting is a twisted ankle. Not impressed I can tell you on that one. So I have had the ankle strapped and elevated for the past couple of days and finally it is beginning to come good. I mean I did not even twist it that badly. You combine fibromyalgia with bad weather and a damaged joint and everything is not good.
Anyway enough of that rot. The ankle is improving, the cold is gradually disappearing. It all just means that I am going to have to be a little more careful with myself. Dumb thing is that I thought I was being careful. All I can say is that both the cold and the ankle had better be fixed by tomorrow as I have training to go to and I do not like missing them. The fencing really does help my FM thanks to the regular relatively gentle movement. Hopefully my next post will be more interesting and less of an update. Or at least a good update.
Cheers,
Henry.
Monday, April 8, 2013
Recovery and Inspiration
Greetings,
Well, what can I say, the "crash" happened and I got hit hard. I basically was taken "out of service" for a full week and really I am not back up and running completely again. This was one of those times where the body made the statement that "You will rest." I tend to push myself to breaking point and past it often so this is the result. What can I say? In this particular case the pushing was well worth it.
I traveled to Glenworth Valley on the Easter weekend via Sydney and Gosford for one day of a week-long medieval festival which happens around Sydney each year. My purpose was to examine a Guildmaster's Prize, which is essentially the last examination for the top grade in a Western Martial Arts organisation I am a part of. It was a lot of fun, but taxing on the body. Ok, so it was not just the Prize it was the "pick-up" fights which I spent most of the weekend fighting and the traveling that really did it, but it was fun so I have no regrets.
So I mentioned "inspiration" in my title. The source, here: http://positivityinpain.wordpress.com/2013/04/07/a-letter-to-my-condition/. This is a blog written by a lady with fibromyalgia like myself, and reading it I found a little inspiration to explain a couple of things which may not be as apparent as they might be. These are some things about my life, so you will forgive the "thought-writing" process that follows.
I have had fibromyalgia now officially for about a decade or so. It has torn my life apart. It has ruined opportunities and plans which I had in place for many years. I do not doubt that it has also destroyed some friendships and also made some of my friends look at me quite differently. It causes me pain on a daily basis and makes my activity levels so random that is difficult to plan anything ahead. It causes me to be inactive for weeks on end causing me stress and feelings of uselessness. I have no doubt that some of my friends have abandoned me due to the random nature of my condition, and also due to a lack of understanding of what I go through.
My condition has placed lots of stresses on my personal life and interactions as well. I believe that I have had relationships end due to the effects of the condition and the resulting limitations of it. My wife is one of the most understanding people in the world, she understands some of what I go through. She hates my pain almost as much as I do as it limits our interactions and what we want to do. My family has always been supportive, but I suspect that they do not always understand what is going on with me and do not understand the things that I do. I hope that one day that they will.
However, my condition has also changed my life and changed the way that I view my life. I do not have a "normal" life. I do not get up in the morning and go to work. I do not even get up and look for work. I do not have work in the traditional sense. My work consists of researching pieces of history and Historical European Martial Arts in order that I can teach my students the things that I have learnt. My work consists of going to training and teaching students the arts of the Renaissance period. My work consists of writing my blogs of which I have three, this one and two others; one is about fencing and the other is about Elizabethan language.
If I did not have FM I would be at a job every day of the week. Instead I spend my time doing things that I can and more importantly things that I love. My condition has resulted in me changing my life and focusing on the things that I can do rather than the things that I cannot. I do not doubt that without my condition I would not know my fencing as much as I do, nor would I be as skilled as I am. I would not also have students whose achievements are a source of pride.
Sure FM has closed a lot of doors and caused lots of issues, but it has also opened other doors and allowed me to experience life in a different but valuable way. Doors which have opened would not have otherwise been opened. My life is different from the "normal", this I know and accept. I live my life as it is and get as much enjoyment and fulfillment out of it as I can. Everyone should seek to do the same.
Cheers,
Henry.
Well, what can I say, the "crash" happened and I got hit hard. I basically was taken "out of service" for a full week and really I am not back up and running completely again. This was one of those times where the body made the statement that "You will rest." I tend to push myself to breaking point and past it often so this is the result. What can I say? In this particular case the pushing was well worth it.
I traveled to Glenworth Valley on the Easter weekend via Sydney and Gosford for one day of a week-long medieval festival which happens around Sydney each year. My purpose was to examine a Guildmaster's Prize, which is essentially the last examination for the top grade in a Western Martial Arts organisation I am a part of. It was a lot of fun, but taxing on the body. Ok, so it was not just the Prize it was the "pick-up" fights which I spent most of the weekend fighting and the traveling that really did it, but it was fun so I have no regrets.
So I mentioned "inspiration" in my title. The source, here: http://positivityinpain.wordpress.com/2013/04/07/a-letter-to-my-condition/. This is a blog written by a lady with fibromyalgia like myself, and reading it I found a little inspiration to explain a couple of things which may not be as apparent as they might be. These are some things about my life, so you will forgive the "thought-writing" process that follows.
I have had fibromyalgia now officially for about a decade or so. It has torn my life apart. It has ruined opportunities and plans which I had in place for many years. I do not doubt that it has also destroyed some friendships and also made some of my friends look at me quite differently. It causes me pain on a daily basis and makes my activity levels so random that is difficult to plan anything ahead. It causes me to be inactive for weeks on end causing me stress and feelings of uselessness. I have no doubt that some of my friends have abandoned me due to the random nature of my condition, and also due to a lack of understanding of what I go through.
My condition has placed lots of stresses on my personal life and interactions as well. I believe that I have had relationships end due to the effects of the condition and the resulting limitations of it. My wife is one of the most understanding people in the world, she understands some of what I go through. She hates my pain almost as much as I do as it limits our interactions and what we want to do. My family has always been supportive, but I suspect that they do not always understand what is going on with me and do not understand the things that I do. I hope that one day that they will.
However, my condition has also changed my life and changed the way that I view my life. I do not have a "normal" life. I do not get up in the morning and go to work. I do not even get up and look for work. I do not have work in the traditional sense. My work consists of researching pieces of history and Historical European Martial Arts in order that I can teach my students the things that I have learnt. My work consists of going to training and teaching students the arts of the Renaissance period. My work consists of writing my blogs of which I have three, this one and two others; one is about fencing and the other is about Elizabethan language.
If I did not have FM I would be at a job every day of the week. Instead I spend my time doing things that I can and more importantly things that I love. My condition has resulted in me changing my life and focusing on the things that I can do rather than the things that I cannot. I do not doubt that without my condition I would not know my fencing as much as I do, nor would I be as skilled as I am. I would not also have students whose achievements are a source of pride.
Sure FM has closed a lot of doors and caused lots of issues, but it has also opened other doors and allowed me to experience life in a different but valuable way. Doors which have opened would not have otherwise been opened. My life is different from the "normal", this I know and accept. I live my life as it is and get as much enjoyment and fulfillment out of it as I can. Everyone should seek to do the same.
Cheers,
Henry.
Friday, April 5, 2013
Master of the Six Ps
Greetings,
Yes, I know the title for this one is a little odd but there will be an explanation of what I am talking about very shortly. For starters, this particular entry is all about preparation. Preparation is important in many different facets of our lives.
The six P's are as such: "Proper Preparation Prevents Piss-Poor Performance" and it is the concept which goes with this that I am attempting to master. This is obviously a long-term project and applies not only to my fencing, which takes up a big part of my life, but many other parts of life. It is a statement which was made by my father some time ago. I thought, at the time that it was an awesome saying, and needless to say it has stuck in my head.
So, time for a bit of examination. For starters we look at the concept behind it. It points toward what a person does before an event in order that the event goes off properly. However, underlying this particular idea is also the point that if the event does not go off, there is the high likelihood that the person only has their self to blame for the outcome. These two are the important elements overall, but it is also useful to look a little closer.
The statement could have said "Preparation Prevents Piss-Poor Performance", but this would not be as accurate. We can prepare for an event of any kind, be it an examination, a tournament of some kind, or a performance piece. The level of preparation is important we can prepare a little and brush over the important bits, and this can lead to a substandard performance. This highlights the importance of proper preparation. It is proper preparation which is of the greatest use in preparing for an event.
The next part to look at is the word "Prevents". The word "prevents" implies that the thing goes a great deal toward something not happening. However it is important that it is not complete. There are things in our lives which we cannot control which can affect a performance. For an outside performance, the weather is a big factor in this one. Of course, it could be argued that a wet-weather back-up plan could be part of the preparation. There are things we cannot control, injury, illness and family issues, all of these things can affect the performance, and in some cases whether it happens or not. What this does say is that proper preparation puts you in the greatest position, for elements you can control, to succeed.
With a little more focus on the medical side of things, making sure that the appropriate medications are taken at the correct times goes a long way to ensuring that the day works out. In some ways it can be argued that the taking of such medication is the proper preparation for the performance of the next day. For the individual with fibromyalgia preparation can be difficult. However, we all know the signs of a bad day coming up, the creeping pain issues building and general feelings of not being well. In the case of preparation in these cases it is ensuring that there is nothing important planned for that day, or cancelling it if there is.
I am still in the process of mastering the Six Ps, but I can guarantee that life gets easier the more that you are prepared for things. Hell, preventative preparation counts on this one. Of course we can never take into account everything that may happen, but there is a lot that we can examine and take into account. Preparation helps with regard to this. Putting in the preparation even if the event does not happen is a good thing as it gets you used to the idea, and will make things easier for you in the long-run.
Cheers,
Henry.
Monday, March 25, 2013
The Inevitable Crash
Greetings,
Well, I have been cruising now for a couple of weeks doing stuff at home and with regard to several projects. This is not to mention my usual training sessions that I am involved in. All in all I have made some progress over the past couple of weeks, but I know what is coming around the corner... the crash.
The crash for me is usually the result of pushing myself a little hard for a single burst or over a period of time. For the most part in this instance it is the second one. This one has been building up for some time and I have been putting off the rest-breaks I should really have been having. What does this mean? This means I am going to pay for it in the not too distant future. It will probably result in some severe down-time for a couple of days while I recuperate.
At the moment I am putting this one off until after Easter. I have an examination to test in Renaissance fencing to do down near Gosford. My accommodation has been paid as has my flight down so all I have to do is hold this off until I get back and it will all be good. Of course this is going to have to result in some "artificial buoyancy" for the period, mainly consisting of more sugar and caffeine in my system while I am up and the possible increase of some pain medications overnight. Why would I do this to myself you would ask?
Because the effort is worth it. I would rather have some big high points in my life and have to put up with the lows that accompany it than just coast where it is comfortable. This is my nature I am stubborn and I refuse to let my condition determine what I will do in the future. I want to be able to do stuff now, and have the chance to do it again later. If this means that I have to pay for it... so be it. As far as I am concerned hitting the heights is most definitely worth the lows that accompany it.
Cheers,
Henry.
Well, I have been cruising now for a couple of weeks doing stuff at home and with regard to several projects. This is not to mention my usual training sessions that I am involved in. All in all I have made some progress over the past couple of weeks, but I know what is coming around the corner... the crash.
The crash for me is usually the result of pushing myself a little hard for a single burst or over a period of time. For the most part in this instance it is the second one. This one has been building up for some time and I have been putting off the rest-breaks I should really have been having. What does this mean? This means I am going to pay for it in the not too distant future. It will probably result in some severe down-time for a couple of days while I recuperate.
At the moment I am putting this one off until after Easter. I have an examination to test in Renaissance fencing to do down near Gosford. My accommodation has been paid as has my flight down so all I have to do is hold this off until I get back and it will all be good. Of course this is going to have to result in some "artificial buoyancy" for the period, mainly consisting of more sugar and caffeine in my system while I am up and the possible increase of some pain medications overnight. Why would I do this to myself you would ask?
Because the effort is worth it. I would rather have some big high points in my life and have to put up with the lows that accompany it than just coast where it is comfortable. This is my nature I am stubborn and I refuse to let my condition determine what I will do in the future. I want to be able to do stuff now, and have the chance to do it again later. If this means that I have to pay for it... so be it. As far as I am concerned hitting the heights is most definitely worth the lows that accompany it.
Cheers,
Henry.
Friday, March 15, 2013
On Goals and Successes
Greetings,
The following entry in this blog is sort of a way of explanation. A couple of days ago I made a post on Facebook and Google+. I will admit that I was a little short tempered at the time and a little unimpressed. So I will present the post below and then explain a little more of what I meant with regard to that expression. The post was as follows:
1. Figure out what you want to do
We all tend to muddle through life a little at least. I suspect that even with the most focused of minds there are times where the targets are a little blurry. This step is about regaining the focus and figuring out what you want to do with yourself. This lays the foundation for the following steps, and in some ways is one of the most important steps. If you don't know what you want to do it is difficult to set goals for yourself. An important point here is that this target can be small or large, near or far. This is a personal journey.
With regard to this, this is for people who want focus. There are those of us who are quite happy to coast through life. This is fine. This is for when the coasting stops in their case. There are those of us who devote our time to other people all of our time. This is for when they decide that they want to do something for themselves, whether or not this assists others or not. As I have stated, this is a personal journey.
2. Set your own goals and work toward them.
This follows on nicely from the last one. Once you figure out where you want to be, you need to set goals in order to get there. You need short-term goals and long-term goals. Once you have the goals you need to work toward them. Seems relatively simple really, however this can be tricky. If all the goals are long-distance or long-term it will be difficult to see how to get there. Remember that you also need short-term goals as well.
The second part of this is can be a difficult thing. People can set goals but if they do nothing afterward they should not be surprised that they cannot get there. Being a personal journey these goals should not be dependent on other people only ourselves. These are goals for yourself. Do not hinge them on the success of someone else, only your own successes. You need to work toward the goals.
3. Do not compare your successes to others as it is not a relevant reference for your goals.
Even when you are on a similar path, comparing your successes to another's is irrelevant. So a person achieves a goal that you were going for, this does not mean that you should not also go toward it still. So a fellow student out-performs you, this does not reference your goals as theirs are not yours. Your goals are yours to achieve, you are the only person who is relevant in achieving them.
Even more importantly, your goals may be smaller than their goals. This is nothing to be ashamed of. You do what you can. If your goals are small, there will be more of them. It is important that these small goals build to a bigger goal. You need to achieve your goals for yourself.
4. Even if these goals do not yield "real world" results your goals are just as important as people's goals which do.
Everyone likes to hear of goals which are achieved. We hear them on the news, "Professor Smith has found a cure to a disease.", "Joe Blogs has won gold at the Olympics" and so forth. I do not expect that any of the goals which I have achieved or will achieve will ever be noticed in this form. This does not bother me in the least.
Goals which get "real world" acclaim are important, but it does not mean that all goals need to be like this. Every goal is important at least at a personal level for the individual who achieves them. This success is more important than any amount of acclaim which a person gets from the outside. I suppose I need to give a little bit of personal detail here.
I have now been fencing in some form for 20 years. This is an achievement in itself. I have been doing Renaissance martial arts for almost as long with a medieval and Renaissance recreation society for almost as long. In that time I have risen to the top levels in that society. This is an achievement which took at least 10 years out of that 20 year stretch. I have been teaching Renaissance martial arts for some time as well and have had students also raise themselves to the high levels with my assistance. In the "real world" this does not mean much, but it is an achievement that I am proud of. These are my goals, they are important to me, and that is all they need to be important to.
5. Be brave enough to evaluate your own level of work truthfully as you have only one person to blame if you are not getting there.
Self-evaluation is important and is also one of the hardest things. Step 5 is all about being truthful about the amount of work you have put in in order to get your goals. This is about not blaming others for your own lack of success. The only person who can achieve your goals is you, and thus you are the only person who can put in the work to get there.
We need to evaluate our own progress toward our goals and find the reasons for why we are not getting there. In some instances it is because the goal is too far to evaluate the success. In some instances it is because the goal is a bit too big for what we are capable at that point in time. In some instances circumstances have made the situation not appropriate for that goal at that point in time. However we also have to admit that sometimes it is because we have not put in as much work as we should have. In all these instances we have to be honest and find out the real reasons.
Most Important
Most important of all, they are your goals, you have to set them, and you have to work toward them. This is one of those times where people can help you toward your goal but the work is going to have to primarily be done by you. Be honest in your evaluation of your goals and also your efforts toward your goals. Both of these are important.
Cheers,
Henry.
The following entry in this blog is sort of a way of explanation. A couple of days ago I made a post on Facebook and Google+. I will admit that I was a little short tempered at the time and a little unimpressed. So I will present the post below and then explain a little more of what I meant with regard to that expression. The post was as follows:
Just a short bitch... On Goals and SuccessesAs I stated, I was unimpressed at the time and now I have some time to look back at what I wrote and give a little more explanation as to what I meant by my five step plan. More to the point I can explain a little about what I have been doing with regard to my own.
1. Figure out what you want to do.
2. Set your own goals and go toward them.
3. Do not compare your successes to others as it is not a relevant reference for *your* goals.
4. Even if these goals do not yield "real world" results your goals are just as important as peoples' goals which do.
5. Be brave enough to evaluate your own level of work truthfully as you have only one person to blame if you are not getting there.
Sorry, I just needed to get this out of my system.
1. Figure out what you want to do
We all tend to muddle through life a little at least. I suspect that even with the most focused of minds there are times where the targets are a little blurry. This step is about regaining the focus and figuring out what you want to do with yourself. This lays the foundation for the following steps, and in some ways is one of the most important steps. If you don't know what you want to do it is difficult to set goals for yourself. An important point here is that this target can be small or large, near or far. This is a personal journey.
With regard to this, this is for people who want focus. There are those of us who are quite happy to coast through life. This is fine. This is for when the coasting stops in their case. There are those of us who devote our time to other people all of our time. This is for when they decide that they want to do something for themselves, whether or not this assists others or not. As I have stated, this is a personal journey.
2. Set your own goals and work toward them.
This follows on nicely from the last one. Once you figure out where you want to be, you need to set goals in order to get there. You need short-term goals and long-term goals. Once you have the goals you need to work toward them. Seems relatively simple really, however this can be tricky. If all the goals are long-distance or long-term it will be difficult to see how to get there. Remember that you also need short-term goals as well.
The second part of this is can be a difficult thing. People can set goals but if they do nothing afterward they should not be surprised that they cannot get there. Being a personal journey these goals should not be dependent on other people only ourselves. These are goals for yourself. Do not hinge them on the success of someone else, only your own successes. You need to work toward the goals.
3. Do not compare your successes to others as it is not a relevant reference for your goals.
Even when you are on a similar path, comparing your successes to another's is irrelevant. So a person achieves a goal that you were going for, this does not mean that you should not also go toward it still. So a fellow student out-performs you, this does not reference your goals as theirs are not yours. Your goals are yours to achieve, you are the only person who is relevant in achieving them.
Even more importantly, your goals may be smaller than their goals. This is nothing to be ashamed of. You do what you can. If your goals are small, there will be more of them. It is important that these small goals build to a bigger goal. You need to achieve your goals for yourself.
4. Even if these goals do not yield "real world" results your goals are just as important as people's goals which do.
Everyone likes to hear of goals which are achieved. We hear them on the news, "Professor Smith has found a cure to a disease.", "Joe Blogs has won gold at the Olympics" and so forth. I do not expect that any of the goals which I have achieved or will achieve will ever be noticed in this form. This does not bother me in the least.
Goals which get "real world" acclaim are important, but it does not mean that all goals need to be like this. Every goal is important at least at a personal level for the individual who achieves them. This success is more important than any amount of acclaim which a person gets from the outside. I suppose I need to give a little bit of personal detail here.
I have now been fencing in some form for 20 years. This is an achievement in itself. I have been doing Renaissance martial arts for almost as long with a medieval and Renaissance recreation society for almost as long. In that time I have risen to the top levels in that society. This is an achievement which took at least 10 years out of that 20 year stretch. I have been teaching Renaissance martial arts for some time as well and have had students also raise themselves to the high levels with my assistance. In the "real world" this does not mean much, but it is an achievement that I am proud of. These are my goals, they are important to me, and that is all they need to be important to.
5. Be brave enough to evaluate your own level of work truthfully as you have only one person to blame if you are not getting there.
Self-evaluation is important and is also one of the hardest things. Step 5 is all about being truthful about the amount of work you have put in in order to get your goals. This is about not blaming others for your own lack of success. The only person who can achieve your goals is you, and thus you are the only person who can put in the work to get there.
We need to evaluate our own progress toward our goals and find the reasons for why we are not getting there. In some instances it is because the goal is too far to evaluate the success. In some instances it is because the goal is a bit too big for what we are capable at that point in time. In some instances circumstances have made the situation not appropriate for that goal at that point in time. However we also have to admit that sometimes it is because we have not put in as much work as we should have. In all these instances we have to be honest and find out the real reasons.
Most Important
Most important of all, they are your goals, you have to set them, and you have to work toward them. This is one of those times where people can help you toward your goal but the work is going to have to primarily be done by you. Be honest in your evaluation of your goals and also your efforts toward your goals. Both of these are important.
Cheers,
Henry.
Saturday, March 9, 2013
FM for Others
Greetings,
The idea of what other people can do to help a person with fibromyalgia has been something which has been rattling around in my head of late. This mainly comes from a point of people not understanding what having FM is like and also not understanding about what a person with fibromyalgia really wants in the way of support. In some ways this comes from not understanding the condition itself, but it is not just that.
Dealing with someone with a chronic condition is difficult for others most especially where they do not understand what the person wants. It is even more difficult where the person with the condition is unable to articulate what is going on or what they want. In this way it is really a two-way street in that information needs to be flowing in both directions for real understanding. With this situation in play, it is of little surprise that people get frustrated, on both sides.
So I will start with something simple. A person (friend or family) with FM approaches you and looks like they are not doing well at that time. As well as many of us have learnt to hide our pain, there is still evidence of it present. You ask how they are doing, they give you a list of what hurts and in what way (if you are lucky). Here is where people go wrong, it is not sympathy that the person wants here, they want some understanding and empathy. This is a not a competition for the "Mine hurts more than yours" trophy. You will find that empathising with the person will do a lot more for them than sympathy.
One of the greatest things about FM is the feeling of being alone. When a person empathises with them with regard to their condition, and they can see even a glimmer of understanding, the individual with the FM can see that they are not alone, and will begin to feel better. This is really simple but really useful. Sympathy is like a pat on the head and a pass off to the next topic. Empathy is engagement with another person with a degree of understanding and this is so much more useful.
The feeling of being alone also affects other things especially where it comes to getting support which can aid them. The feeling of being isolated means that many develop tough skins and become highly independent individuals. Used to struggling alone and dealing with what they can. This independence unfortunately also makes it difficult for them to ask for help, even when it is really needed. This is where some of the understanding which was mentioned before becomes even more important.
If it is your first time dealing with a person with a chronic condition knowing what to do and when is hard. This is because it is difficult to understand what is going on with the individual. It is at this time that engagement on your part is necessary, remember the point about empathy made before. Once you understand what is going on it is easier to see the signs where help would be appreciated, even if it is not asked for.
It is surprising but at this point in time, it is where the small things help. Getting an item, or volunteering to do so is helpful. Even if the request is denied, once again there is the feeling of not being alone as indicated above. Many people with FM have issues with asking for help due to some of the stigma attached to the condition, so they will often struggle, or simply do without. Small amounts of assistance go a long way at this point in time. Simple things will all person to understand that help is out there and all they have to do is ask. This may take some time though.
Most of the highly independent individuals will push until they cannot, and even at this point in time will deny help, it is at this point in time if help is denied, it may help to be a little forceful in your approach. Encouraging the help will often break through such stubbornness and make the individual realise that it is okay to ask for help, or even accept it.
This is a rather rough guide for dealing with an individual with FM. It can also apply to people with other conditions also. Many of these individuals will not ask for help, but when it is offered will take it, or understand that they are not alone. Remember it is understanding that these people want, a degree of empathy. Sympathy is a stop-gap measure, empathy and understanding are much more useful and give much more aid.
Cheers,
Henry.
The idea of what other people can do to help a person with fibromyalgia has been something which has been rattling around in my head of late. This mainly comes from a point of people not understanding what having FM is like and also not understanding about what a person with fibromyalgia really wants in the way of support. In some ways this comes from not understanding the condition itself, but it is not just that.
Dealing with someone with a chronic condition is difficult for others most especially where they do not understand what the person wants. It is even more difficult where the person with the condition is unable to articulate what is going on or what they want. In this way it is really a two-way street in that information needs to be flowing in both directions for real understanding. With this situation in play, it is of little surprise that people get frustrated, on both sides.
So I will start with something simple. A person (friend or family) with FM approaches you and looks like they are not doing well at that time. As well as many of us have learnt to hide our pain, there is still evidence of it present. You ask how they are doing, they give you a list of what hurts and in what way (if you are lucky). Here is where people go wrong, it is not sympathy that the person wants here, they want some understanding and empathy. This is a not a competition for the "Mine hurts more than yours" trophy. You will find that empathising with the person will do a lot more for them than sympathy.
One of the greatest things about FM is the feeling of being alone. When a person empathises with them with regard to their condition, and they can see even a glimmer of understanding, the individual with the FM can see that they are not alone, and will begin to feel better. This is really simple but really useful. Sympathy is like a pat on the head and a pass off to the next topic. Empathy is engagement with another person with a degree of understanding and this is so much more useful.
The feeling of being alone also affects other things especially where it comes to getting support which can aid them. The feeling of being isolated means that many develop tough skins and become highly independent individuals. Used to struggling alone and dealing with what they can. This independence unfortunately also makes it difficult for them to ask for help, even when it is really needed. This is where some of the understanding which was mentioned before becomes even more important.
If it is your first time dealing with a person with a chronic condition knowing what to do and when is hard. This is because it is difficult to understand what is going on with the individual. It is at this time that engagement on your part is necessary, remember the point about empathy made before. Once you understand what is going on it is easier to see the signs where help would be appreciated, even if it is not asked for.
It is surprising but at this point in time, it is where the small things help. Getting an item, or volunteering to do so is helpful. Even if the request is denied, once again there is the feeling of not being alone as indicated above. Many people with FM have issues with asking for help due to some of the stigma attached to the condition, so they will often struggle, or simply do without. Small amounts of assistance go a long way at this point in time. Simple things will all person to understand that help is out there and all they have to do is ask. This may take some time though.
Most of the highly independent individuals will push until they cannot, and even at this point in time will deny help, it is at this point in time if help is denied, it may help to be a little forceful in your approach. Encouraging the help will often break through such stubbornness and make the individual realise that it is okay to ask for help, or even accept it.
This is a rather rough guide for dealing with an individual with FM. It can also apply to people with other conditions also. Many of these individuals will not ask for help, but when it is offered will take it, or understand that they are not alone. Remember it is understanding that these people want, a degree of empathy. Sympathy is a stop-gap measure, empathy and understanding are much more useful and give much more aid.
Cheers,
Henry.
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