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.
Thursday, September 19, 2013
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.
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