Ok so I wasn’t going to blog, but today it’s avoidance tactics as I’m supposed to be packing. lLove going on hols but when you have to pack for a family of 5 plus self-catering stuff, it’s really not all that fun…
Anyway I also wanted to blog about something that happened yesterday, which was that my referral arrived for the CFS clinic. Apparently the first thing I have to do is attend a ‘Managing your Fatigue’ session. Sounds really fun…
But what was very interesting, as I was feeling rather cynnical about the whole thing and making sarcastic remarks about the wadge of papers that had come through my door, was a questionaire. Which was no less than enlightening. You see I think I’m still a little bit in denial about the whole ‘being ill’ thing. I know I have symptoms and that I am exhausted but CFS seems a bit like a non-diagnosis, because they have tested me for everythign else and still don’t know what it is… It’s like they didn’t know what else to do.
However the questionaire, which I was rather reluctantly filling in whilst I could have been watching ‘Country House Rescue’…(what is my life coming to?) actually grabbed my attention by the second page. There were so many questions that to anyone else would have seemed rather odd, but to me, perfectly described my symptoms. And things that I didn’t even know were symptoms. Like memory issues for example. I have always had a good memory, my husband has joked about it. Especially as he doesn’t. But now I have a worse memory than him. I have forgotten to attend important meetings/appoitnments even when I have clocked the memo in my diary just a few hours before. It’s not only embarrassing but worrying.
Another thing flagged up was about having trouble speaking – mixing up words, not being able to remember the right word, mixing up endings to words. This is something that I haven’t even admitted to my husband but I have been having trouble with this kind of thing. I was honestly very worried about it. What if there was something wrong with my brain? but no, that was on the questionaire too, so thankfully I don’t have BSE or incredibly-early-onset-alzheimers, I am JUST TIRED! and also forced to admit that it seems I do actually have CFS. I may not be bed-bound or unable to climb steps but I do have a condition that is affecting my life rather a lot right now and more than I had realised. So best stop the deinal thing and get along to the ‘Managing Fatigue Session’ then…
As per previous post I really will be away as of tomorrow so won’t be looking at comments but feel free to comment and I will reply on my return or tweet me @redjules 🙂
2 Comments
Alan Crawley
August 20, 2011 at 10:23 amThoughts and prayers are with you – I have been told that CFS is quite like glandular fever, but it goes on 🙁
Lucy Mills
August 23, 2011 at 12:21 pmI can sooo relate to this. When I was referred to our CFS clinic, I was reduced to tears in the first session because they knew exactly what I was talking about. Silly things like supermarkets. I find them utterly exhausting. Now I know why, and I know I'm not the only one. It is utterly releasing to feel understood. I've always been reluctant to attend 'sessions' about my health – but it was a really positive thing to do.