Fibromyalgia Awareness

Highlighting an invisible illness!

Keeping It Together

Having contact with other people who understand how you feel is very beneficial to someone with a chronic illness.

I highly recommend that any fibromyalgia sufferers join the proHealth messageboard. (www.fibromyalgiachat.com) There is also a chatroom and lots of useful information about the latest theories and research. Since joining the proHealth messageboard I have gained far greater control over my fibromyalgia. I have picked up many coping techniques and been given a lot of beneficial advice from other members of the messageboard. I find the messageboard very therapeutic and encouraging, because so many people share advice and information there.

I also recommend that you read about Rich Carson, the founder of the site. He suffers from Chronic Fatigue Syndrome but has managed to achieve some incredible things in spite of this. Rich has done a lot of work to spread CFS awareness and through the messageboard has provided millions of sufferers of fibromyalgia and other chronic illnesses with a method of communicating with other sufferers.

There are many messageboards and chatrooms on the internet where you can have contact with people who understand. However, most do not have many members and are therefore not as supportive as you might hope. ProHealth is the biggest online messageboard for fibromyalgia & CFS sufferers, so you get answers very quickly if you post a question there.

Hope to see you on the proHealth messageboard!

Feeling embarrassed?

Some people with invisible illnesses such as fibromyalgia or Chronic Fatigue Syndrome say they feel ashamed to use their walking stick or their disabled parking permit because they don't look sick so people are suspicious. Some people are embarrassed by the smell of their muscle rub or the fact that they can't do things that they used to do.

I just want to point out that when people question you or notice things that make it clear that there is something wrong with you, this is your chance to increase awareness!

When people ask me why I reek of menthol (my muscle rub) or why my back is lumpy (thank you heat patches!) or why I am wearing a wrist support, etc etc I am not ashamed or embarrassed, I tell them I have fibromyalgia and answer any questions they have, then conclude with "I have been trying to increase awareness actually, so I'm really glad you asked! I have some information about it in my handbag if you are interested. It explains better it than I can!" then produce one of my leaflets for them to read.

When people respond saying "oh how terrible" I don't feel offended that they pity me, I just smile and say "well some people have it a lot worse than me, the severity of symptoms varies a lot. & a lot of people have Chronic Fatigue Syndrome on top of fibromyalgia, so that must be a lot harder to handle" ...this then gives me the opportunity to do a bit of educating about CFS as well.

So please don't feel ashamed when your symptoms are visible, take advantage of the situation and educate people about our illnesses. They may know someone with the same symptoms who is still searching for a diagnosis! Help increase awareness and feel proud of yourself for doing so.

Dealing With Limitations

OK we all know that you have to learn to pace yourself and accept your limitations if you have a chronic illness. But we also know how hard that is when there are things you really want to do.

There was a time when I was a straight A student, did extra things to better myself and spent a lot of my time trying to make myself the most impressive, most-widely experienced girl EVER!

As a result I have a fantastic CV with a ridiculous amount of extra-curricular skills and work experience in several fields of work. & I'm only 21!

So that's pretty great, except for the fact that my brain seems to be slowly crumbling and now some days I'm not even sure what an "A" looks like. I certainly haven't achieved one in a while!

I get so frustrated because my memory is rubbish - I get out of a lecture and a friend will turn to me and say "ok what was that lecture about?" and I'll cringe because I was listening SO HARD and it made sense to me at the time, but I can't for the life of me remember what it was I was learning!

There is no "re-" in my revision - I am learning everything for the first time again. There's no way I will ever achieve the grades I wanted, to be able to earn megabucks to set up my own soup kitchen and to help the orphans in the Tanzanian orphanage I worked in! I was going to save the world!!!!

So now I'm trying to find ways of adapting, to somehow achieve all my phenomenally high goals. I don't know if I'll manage & accepting that is something I may never be able to do.

As for pushing myself too hard, that hasn't stopped since I got fibromyalgia - I climbed mountains!! I had fibromyalgia then too! I feel like I should tell people I was alright then, because I don't want them to think that fibromyalgia is no big deal and doesn't stop you doing anything. - But I wasn't fine, I was in agony, but I was so proud of myself for sticking with the challenge that it was worth it. I always felt like I had to push myself more and more.

I have had to slow down because the fibromyalgia has gotten a lot worse over the past few years, but I still push myself more than I probably should. I always will. I pace myself more than I used to but it's not easy, it doesn't give me that sense of pride that you get when you know you have achieved something incredible. But that's OK. I will do incredible things that don't make my body hate me! It just requires more thinking.

Nowadays when I need to feel proud of myself for achieving something, I don't try to do something physically challenging, I do something to increase fibromyalgia awareness. Or if I'm out of ideas on what else I can do, I'll do something to increase awareness for Chronic Fatigue Syndrome or another invisible illness, because they could all do with awareness being increased. Increasing awareness makes me feel like I have achieved something important. It might make a difference. Someone might be diagnosed earlier on. Or it might reassure someone else who has fibromyalgia to see one of my posters up. It might make them feel less alone.

Don't let fibromyalgia make you feel like a failure. There is still a lot you can do. Try increasing awareness - it makes you feel good about yourself!

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Fibromyalgia Awareness - Highlighting an Invisible Illness!

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