Unicorn spotting

Blog entry posted by Bookworm84, Mar 9, 2017.

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.
ahmo, trishrhymes, hedgehog and 2 others like this.
  1. ahmo
    PR is a human chain, all of us helping to search in the dark.
    It took me 8.5 years to stumble onto a path of healing. 5 years of healing has me now with an incomparably better quality of life. I now know how to manage my illness. This may be as good as it gets for now. cheers.
    Bookworm84 likes this.
  2. trishrhymes
    me too, me three, me four... There is no cure at present. There are things that some people find help with symptoms, and variations in symptoms that happen despite what we do or don't do. My approach is mainly trying to pace myself to reduce setbacks, and live whatever life I can as well as I can. For many of us resisting the temptation to spend a lot of money on unproven treatments, and just trying to eat as healthily as we can is the most rational approach while we wait for a proven cure.
    Bookworm84 likes this.
  3. hellytheelephant
    You express very well how I feel everytime I read one of those 'do what I did and you will get well.' I also agree that it is likely that people often will relapse . I was very sick for many years and then got considerably better due to ( or during- depending on your point of view)- homeopathy.
    I know that the supplements I took then don't work...and have come to the conclusion that whilst certain treatments are helpful for certain people...you get better when you get better...or you don't.
    Don't feel bad that you are not striving to find cures. No one on this planet has the answer to curing ME- and when you have limited energy it is important to spend it how YOU want to.