I live with a little understanding, often invisible, medical condition which means that my life is a bit Russian. I never know from one week to another, or even from one day to the next, how I will be.
Take the last month. I’ve had a couple of pretty good weeks, where I’ve been able to go out and do something extra, like meeting friends. However, this also has to pay a few days. I was stuck in bed without being able to leave the house.
This yo-yoing of the symptoms is typical of the person suffering from fibromyalgia. It is one of the most common chronic conditions in the world, and is shrouded in mystery. Last week, she came into public consciousness when Desert Island record artist Kirsty Young said she would take some time off because she has the condition. Last year, Lady Gaga showed that she was suffering.
My fibromyalgia started when I was 24 years old, shortly after the birth of my daughter in November 1993. It happened until May 2005 to get a diagnosis. In those 12 years, I was told that my symptoms were due to various types of arthritis, depression and, more than once, that they were all in my head. It was a very frustrating moment, especially when all the tests and X-rays were still clear.
When I finally got my diagnosis, it was a great relief to have a name for what I was experiencing. However, that relief was mitigated when I soon began to realize that many people do not consider fibromyalgia to be a real disease. If you do not have a medical test, then that condition does not exist, they believe.
My main symptoms are generalized intense pain, chronic fatigue, cognitive dysfunction and memory problems (we call it “fibro fog”), sleep problems and irritable bowel syndrome – but there are many more that affect me to varying degrees. Like many people with fibromyalgia, I can see much better than I do, and the condition is often described as an invisible disease for this reason. Because you do not look sick, or there is no obvious cause for the symptoms, people can not believe that you are so sick. strangers
Most of the time I use walking crutches or my mobility scooter for longer distances. My balance and my spatial awareness are very poor, so I could wobble, stumble and fall if I do not use them. People do not want to use a walking aid or not. But with fibromyalgia you may need it one day, then not the next.
Fortunately, my symptoms are at a manageable level, thanks to a combination of medications, supplements, complementary therapies and self-control techniques that I learned over the years. I also received a lot of support from family and friends, and I am a founding member and secretary of my local support group. This led me to volunteer for Fibromyalgia Action UK, where I now work as a part-time administrator. I do the best I can to maintain my hobby or crafts: crochet, knit, cross stitch and make cards.
I think that every person with fibromyalgia has its part to play in public about the condition and how it affects us. Each of us has different symptoms and is related to different degrees and is raising and understanding what we are going through.
What gives me hope is that in the future the cause will be known and there will be effective treatments. At the moment, the symptoms are treated individually and the services depend on the place where you live. And there are still many health professionals who disdain the condition.
One day, I hope that when someone asks what is wrong and responds: “Fibromyalgia”, I will not receive the answer, “Fibro, what?”
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