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I wondered if I am the only one...
I have often wondered if other people have had the same experience as me, although, I also know that everyones ME/CFS is different.
I have had ME/CFS since 2000 ( of course it wasn't recognised, in the UK (at least then) but that's how long I have had it. I thought I would share what I think has been the key for me. I have never actually recovered but have been able to manage the condition for years to the degree that I was able to have and care for a child without difficulty, yes, sleepless nights and feeds and all that...
I was really sick for the first couple of years after a virus and felt like my life was at an end to be honest. I was confused and disorientated and unable to funtion normally, unable to express myself of even think staight and unable to really look after myself, my memory was shot to pieces and I was disending into being almost bed riden, just surviving with all the things I needed just around me, like a nest.
I did reach out in a few ways, one of which was to subscribe to a couple ME magazines. I rarely read them as it was too much concentration but one day I did really read one atricle which changed everything.
The atricle was about alllergy testing; not a scratch test from the doctor but from alternative practitioners a "non invasive" method using mild electicity that would measure your reaction to substances. Intolerences really rather than allegies.
I got tested and was shocked to be given a large number of things to avoid.
It took me about six months to actually impliment the changes necessary; i.e. changing diet and the most important thing was to change my bed/bedding/bedroom. I had to wash everything, hot and regularly, get rid of carpets... Luckily I had done that already as I like wood floors... and clean the place up.
I had been decending into a nest of housedust mite and mold!I understand that most people think that the level of change that was required is unacceptable but, to me, my quality of life had been unacceptable, and I was willing to do almost anything.
After and during that six moths, things changed alot and I got my life back and was able to function normally, just had to be carefull about my my diet and environment. After excluding the long list of things I was able, then, to tell if something not on my list affected me as I had a point of clarity to compare with and identify something that made me feel ill. Previously, I would have had no chance as there were so many things going on it was just a mess of illness.
I still have to be very careful about everything and it can be abit isolating but I have me back and I really can feel normal.
I have to say, though, that in 2009 I moved house to what I didn't realise was a damp house ( previously I had just had to pull up carpets and I was fine ) and I had a major spike in the number and level of intolerences I had and became sick again. Since then I have had to be much more careful and have had to make alot more changes, especially moving to a better house, which is extreme, I know, but I am well again which to me is so amazing I don't really mind what I have to do.
I write this as I think that it's possible that it could help others, I know that everyones ME/CFS is different and it's wrong to be prescriptive to others, I remember people saying to me, you just have to do Blah Blah and you'll be fine, none of which ever worked... But I can't help wondering if it could be the same for others because if I am having a problem, especially with something I am exposed to while asleep, I come down with real classic ME/CFS symptoms, and how!
Just thought I'd put it out there.
Best hopes and wishes to all.
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