Down, but not dead yet!!!!

» Sheenaann - Fibromite, in a wheelchair, but surviving!

I went through the month or three banging my head and asking why me, and going through the 'grieving process' of a life that is now lost, suffering from Fibromyalgia and Osteo-arthritis (had a kneecap removed in 1989), and now using a wheelchair 99% of the time. However, my goals haven't changed. The goalposts may have been moved around a little...but, I'm still at college aiming for my HND in Travel and Tourism. If anything I've discovered me I never knew existed....a determined me...one that now has empathy for others, but one that still wants to do as much as I can, within my limitations. I discovered access problems in my college and I am now advising them of those problems so that, when the college is rebuilt next year, it should be accessible to everyone. I learned to overcome the 'embarrassment' of disability, and now I have a voice I never knew I had. I no longer feel embarrassed about the wheelchair at college, or in my daily life; or the awkward walk when I have elbow crutches (only in the summer!)...my friends now know that I am still me and if anything, even more determined, and less likely to take things around me for granted. If anything I see my role as trying to raise awareness of Fibromyalgia, and educating those who say,"it's not a crippling illness" to realise that, when combined with other chronic illnesses it can often be 'the straw that breaks the camel's back!' I've left behind a life where I used to go running and do things like abseiling, bridge-swinging and taekwondo....but it has been worth it to find that other person deep inside. I don't say it's painless...far from it...with both fibro and arthritis it can be hell...but it is worth it to know that anything I do now, I get great satisfaction from succeeding! Can't wait to graduation day!! As for those who cant accept me as I am now...that's their choice!....and their LOSS!!!

Sheena-ann

-- posted by Sheenaann

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» autumn02 - Re: Fibromite, in a wheelchair, but surviving!

In response to message posted by Sheenaann:

Well I commend you on your spirit.

I noticed that you said, 'combined with other diseases'. It occurs to me that the other diseases are secondary symptoms of the primary defect... whatever that defect might be.
In essence your body is trying to do something but when the chips are down, the defect just screws-up some of good parts. So there's possibly a primary shutdown of a pathway which feeds back to control neurosignals and these stimulate pain by way of the immune functions of TNF. And it's possible that TNF is causing the degenerative problems. This's just a guess. And might be miles off since I just started looking at the disease yesterday. But TNF is a part of the disease and other research people must be thinking the same way I just explained.

Note the functions of the brain ie substance P and Serotonin may not be controllable but there is hope for controlling TNF.

So I'd keep an eye ball on it.. .

-- posted by autumn02

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