Go here to petition the UK Government to take ME/CFS seriously. More details of the campaign on the webpage. You can 'sign' it whether or not you have ME, but you must be in Britain (or expatriate).
Friends are wonderful people. This has been a pretty crappy week in terms of fatigue and pain, and they have made it nicer. On Monday, Rachie came over and cooked me a delicious risotto (see above). Then on Tuesday I went to Newbury to stay with my new friend Linz, with whom I spent a very lovely day just chatting, drinking tea, watching silly films and generally having a nice, laid-back time. (Photo-of-the-day of her gorgeous doggy is on my Flickr page.) I definitely need to meet more people in a similar situation to myself, as it's really nice to hang out with someone who doesn't mind that I can't do active stuff. The local ME groups seem, well, a bit weird - but there is an FMS support group that meets once a month just up the road which could be good. Should give it a go. It's just that getting to these things is a bit of a problem. Next meeting is on the same day that I've got a dermatology appt at Guy's that I've been waiting for since the dawn of time, and I appear to be unable to manage more than one thing per day at the moment. Hmm.
I am really very unwell. Yesterday I just wasn't getting out of bed at all for the extreme fatigue and muscle weakness. Today's a bit better, and I can crawl to the kitchen so at least I can eat, but I'm so dizzy when I stand up that I don't really want to move. This is frustrating, but (it turns out) not the worst thing in the world. My body is *clearly* telling me to rest, so I'm working on that. I've been listening to my Terry Pratchett audiobooks, the Classic FM CD that my mum got me for Christmas, and some Radio 4 podcasts. I've also had to chance to do some thinking about treatment options. I may have made some tentative decisions there, assuming my GP will support me in them. We shall see. Well, as much as it feels like I only just got up, it's late afternoon and I need to think about whether I'm going to attempt my BSL class today. It's unlikely, as I'm just not sure I can make it down the road to the tube station, never mind the tube and bus journeys that follow and then having to sit upright for two hours... But I shall give it some thought. If I pass out mid-way through my shower, that'll be a clue that I shouldn't! Thank goodness we had a stool small enough to fit in the shower, and that I've got used to using it...
Dear God do I need my Girl to come home. :/
1 comment:
Blimey, plenty to catch up upon! Interesting stuff, as ever, and hope you're feeling a little, a lot, better - while relaxing well, as well - half-switching off while listening to radio and/or interbobble-radio sounds about as good a plan as any: enjoy! (as much as possible, anyway!)
A stool in the shower, though?
Pah: why not a water-proof rocking-chair...?
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