I know... I know it was the 8th August but I have Fibromyalgia and as great as I am feeling I have my limitations.
For some ME and Fibromyalgia is terminal. In someways a condition without hope or end is worse. At some point in 1998 my hope left me and realising I was not going to die was a horrifying thought. Some things in life are worse than death. Severe ME is one of them. Yet there is less money poured into it than cancer. Had I been diagnosed with cancer in 1997 there is a much better chance I would have had answers, understanding and a resolution by now. Instead I am sitting in the park weighing up if I have the energy to play with the kids.
Many say "We've never met anyone that badly affected by it" but you wouldn't because they don't have the energy to deal with you. Even a doctor is most likely to see a severe ME patient on a good day because that is when they can get out of the house.
Tonight someone asked me how Fibromyalgia pain compared to being in labour with my children. There's no comparison the labour pains even towards the end and having been induced twice were well within the normal range for Fibromyalgia and they didn't last as long. I've known people with the condition not notice they have broken bones because the pain is within the normal range. My worst nights have been when I've been in too much pain to sit, stand or lie down but I'm too exhausted to be awake., Fibromyalgia chest wall pain is by far the most excruciating thing I have ever encountered.
Is it all in me head? Well there are observable symptoms: my body gets rashes and massive hives, I swell badly and my feet get red, hot and sore. In the modern age I can take pictures of the things that happen to me so that sod's law doesn't occur before I get in to see the doctor.
For me the leaky gut diet has been my first real ray of hope in over twenty years. However, it may be another disappointment.
Here is are some articles that I found worth reading:
Body Count - The Tragic stories of Severe ME
The Telegraph - What It's Like to Live with Severe ME
I wrote this short story myself based on the time just after my diagnosis. Suicide is a valid option when there is no hope.
Wynter, Fibromyalgia Story
The Kimlin Family