Today has been pretty good. By anyone 'normal's standards it has probably been dull as ditch water, but to me, yep, pretty good.
I have seemed to slip into a lazy persons routine - I am sleeping later (or at least lying in bed later) on a morning - when I first left work I was trying to get up at 7ish every day to try and maintain some sense of normality.
Lately my body simply hasn't coped with that and I am now surfacing around 8ish 9ish - the other day I got up at 11am, had a bath, made a nest on the settee with a pile of throws (before I fell down) and slept all day, literally. I suspect that was an ME crash rather than the RA. The routine at the moment involves eating toast or something around midday, taking tramadol etc, pottering, putting away the washing up, catching up online and doing the washing if needed.
Then - back to a warm bed.
This little knackered body is really liking the warmth of the electric blanket, especially my kneesies, and I think this snooze time is helping me to have a few half-decent hours for the rest of the afternoon. If I don't actually sleep it is just as beneficial to simply lie in the warmth.
(Told you it was dull!). On a really good day I even - wait for it - walk to the corner shop and back. I know, tis a wild and wicked life I lead.....
For the last two years my Dr has told me to listen to my body, but the guilt of doing so little has over-ridden this sound advice until recently, when my body has given me little choice in the matter. Having an ME / RA crash is the most bizarre thing - it literally feels like someone has pulled the plug on what energy was there, it is like that feeling when you are about to faint. I can't fight it and have to just go with it, hence a nest on the settee as getting upstairs is impossible when it's that bad - these are the times I am very glad I live alone because I can just close my eyes and ignore everything.
I am also getting better at not planning 'crafty things' - eg the knickers I plan to make, the two dresses, the bags, the crows .... I have the ideas, the materials but not often the energy. That's OK - I am allowed to NOT do them until I am up to it. So at the moment I am (verrrrry slowly) clearing away the things I know I won't be tackling anytime soon, to make some nice space for when I DO feel up to it, if that makes any sense. Which it probably doesn't. The idea is to try and lessen the feeling of guilt and uselessness because I have not achieved (by achieved I think I often mean 'made / created') something that particular day, because the day/hour/5 minutes will come when I do make things and that will be fab.
I dunno, does this make any sense at all? Making things is such a big part of 'me' - to not make much anymore is a bugger, for wont of a better word.
Knitting happens quite a lot (hands willing), mainly because it is something I do sitting down in my cosy corner. Couch potato knitting. And of course knitting is (usually) soothing. Unless it's that time when I am pondering what to cast on next and what with and why can't I find A SINGLE BLOODY PATTERN I LIKE from the mountain that I have AND WHERE IS THE WOOL etc etc etc.
Today - today has been OK, maybe because the sun has been shining. The washing almost dried on the line, my body has co-operated quite well apart from the fibro in my neck, I haven't had to have any of my anti-nausea tablets, I am enjoying my knitting and I have thrown out some clutter from upstairs. That will do.
I hope today has been a good day for you, too.
6 comments:
Oi missus, you have created. Writing a blog post, knitting all creativity in my book. Planning things to make not with a time limit but thinking of the how's and whys of an item to make- all part of the creative act. Don't be hard on yourself you inspire with what you do
Hi, I am Kerstin from Sweden and I have been following your blog for some time now. I read it with interest. I cheer you on the good days and feel with you on the not so good.
I agree with your doctor - listen to your body! There is not one thing you must do today that can´t wait till tomorrow.
All the best!
I've been following you for a while, too, and this post made my day a little better.
I know what you mean about trying to stick to a regular getting up time. It does help you feel more "normal" but you have to listen to your body. If you feel that exhausted then you need to rest because if you try and push through the exhaustion it will take you longer to recover. I know that feeling of wanting to do projects and getting hung up on not being able to do them. It's much easier when you give yourself permission to get round to it one day rather than setting a deadline. Give yourself the space to think about your projects while you are unable to physically work on them. Think about how much better they will be if you work out all the niggles in your head first!
Good, peaceful days and cosiness. This is something I aspire to.
Stay warm and cosy. *hugs*
I understand precisely what you mean. It has taken me years to accept that I will never be 'ordinary' again. (Don't like normal, normal comes with too much pressure).
You really are coping remarkably well even when it doesn't feel like it.
just a bit at a time.
Huge Hugs!
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