In Jan 2008 I met a doctor in Elgin (David Mickel) who asked me how long I had been suffering from CFS.
I didn’t know the answer – it seemed like forever.
He then turned the question around to :
“when do you last remember feeling fully well” ?
And that was easy – the mid-1980s. Maybe the late 1980s at best.
Quite a long time ago then . . .
Its funny how it can be easier to remember a “feeling” rather than precise details. And when I thought back to how it felt when I was fully well – the time/place etc all came back to me easily without having to think about it.
But my story is not unusual.
Throughout the 1990s I sort of managed but quite badly at times. And it got harder and harder as the years went on. Especially at work.
Eventually diagnosed late 2002 or early 2003.
My CFS did, and still does, fluctuate quite a lot.
And I know that I am actually very lucky with this. As it does allow me to do things and have a life. Even if quite a small life at times.
And although it may feel “severe” to me sometimes – I think it would more likely be classed as mild to moderate CFS.
Aug 29, 2012 @ 18:36:44
This was a great column. I’ve been reading some of your others, and I have to say, I don’t think you have “mild to moderate”. I think you’re sicker than you think, and the fluctuating is because you don’t know where you’re envelope is (possibly because it has shrunk over time). That would be me. You sound like me, so that’s why I thought it might be you. But I could be wrong. FWIW, keep your hopes up – there’s a lot of good research going on out there. – Mary (human guinea pig)
Sep 03, 2012 @ 06:01:05
Hi Mary & thanks for your comment. I get your point about the energy envelope shrinking. And you’re right – the fluctuating does confuse me, and makes it hard to predict what is going to be “too much” – even though it probably should be obvious to me by now ! And I do find it hard to get a routine going. Something I need to give a wee bit more thought to. Thanks again – as its great to hear other people’s thoughts and views.
Best Wishes
Anne