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.
Monday, July 15, 2013
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.
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