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.