I read a really interesting post about success stories and what people had done/eaten/taken to get better. Success stories in our world feel a bit like spotting a unicorn or the Loch Ness monster. Exciting, awe inspiring but impossible.
I've seen a few articles over the years (and had them given to me by helpful friends) that give the details of how 'Joe' was cured after 12 months of having CFS/ME.
This boggles my mind as it took me between 6 and 17 years (depending on whether I count the initial virus and subsequent 'iffy' years as the start) to get a diagnosis, let alone start to form any type of plan.
I will admit, by time I got a diagnosis, I was relieved I had a name to call it. They could have called it pinkspottedhippoitus and I would have nodded serenely.
Did I need a label to validate my feelings? Yes.
Did it change anything at all? Not really. Not for a good few years.
At first the label got my employer off my back about my sick levels. It was a relief. I wasn't going mad, it wasn't all in my head. I'd been fobbed off with everything from growing pains to "it's just another cold" (at the age of 22, my 9th 'cold' in a year, each knocking me out of commission for weeks at a time).
I was given a leaflet from a locum Dr giving the NHS guidelines for CFS. You can imagine how up to date and relevant that was!
And that was it. Dr's job was done.
I started eating better, gave up alcohol, ditched the social life entirely and coasted for a while. Neither improving nor deteriorating. At the time I felt that was a win.
Then over the last few years other symptoms have crept in one at a time. Never arriving too fast or too frequently until one day they were just there.
When I read these success stories I often wonder if they've worked long term. Are they still jogging through life 6 months, a year, 5 years down the line?
I hope they are.
Sometimes it shames me that I haven't done more to try to get better. I suppose I'm overwhelmed with where to start.
I've tried Co enzyme Q10 and a few other supplements but apart from feeling like a chemist/extra from Breaking Bad, I didn't notice any discernible difference.
I suppose I'm waiting. In jealous expectation of the day I could just take one tablet a day and feel normal.
I feel like I want to start a human chain of all of us fumbling around in the dark, looking for an answer.
Blog entry posted by Bookworm84, Mar 9, 2017.