Sigh, yeah…all the things you guys have said. I too often have that ‘short list’ and a very short list it is too, and feel twice my age. I hate often not being able to do what most people would consider no effort at all, where I was once so active and strong and ambitious. It’s too soon for this - I’m only 39 and have been crushed by this for over a decade! And the vicious pain, weakness, spasms, exhaustion, loss of memory (often nearly total for the first few years, though that usually improves almost completely…eventually), fear, susceptibility to other illness -
that list goes on and on… The strain of getting married next month isn’t helping, even though I am so happy! It’s especially hard since Mirdath is only 21, too. Mirdath’s so kind and gentle and understanding, but how can anyone help being baffled and frustrated? I know I sure am.
Heh, weirdest symptom? How can I pick just one?
Oh I know…loss of body map/proprioception! Luckily this hardly ever happens now unless I’m having a truly severe attack, ie maybe once in a couple years, though it was pretty constant during the first years of onset. Suddenly realizing that your hands are not where you thought they were is pretty unnerving! Also it made me run into corners and furniture and doorways a lot, arg.
Okay, whining over!
I gotta say, it felt really good though. I have always said that whining is free, effective medicine!
For those who don’t have CFIDS/Fibro, yeah, it is both an immune and a neurological disorder. The mechanisms are not understood yet, and it may well take a big medical breakthrough to figure them out, although progress is slowly being made the long hard way. At least you can’t catch it from us, any more than you can catch multiple sclerosis! If it helps for clarification, not everyone who has fibromyalgia has CFIDS, but nearly all people who have CFIDS also have fibromyalgia bundled along with the rest of the syndrome. No, it doesn’t kill directly, but many victims either suicide from the pain and despair, or wander into traffic or fall down the stairs from either confusion or loss of coordination.
This disorder is one of the very top, if not
the number one cause of disability now for people between ages 25-45. Last I heard, MS was #3, and CFIDS/Fibro is easily as widespread. So many have little or no access to health care, and since we don’t present obvious physical damage (like, you know, big sclerotic patches on our central nervous system) it’s so hard for us to get any support from the people around us. I’m so glad the people here have loved ones, and hopefully medical attention – please remember the huge number of sufferers who don’t have those things, and cannot function well enough to get help.
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