What M.E. feels like.

I’ve decided not to say on facebook how I’m feeling. Looking at “on this day” I seem to go on and on about how much I sleep or how tired I am. And I’m not sure it’s very interesting for anybody really.

So this post is an effort to explain how it feels when I’m having an “episode”.

Last week I did some gardening on Sunday. Monday we had a demonstration of a Thermomix. Tuesday I went to see my friend. Wednesday I had my hair cut and lunch with another friend, then went to the library and picked up five books. Thursday was counselling. Friday I had a meeting. Saturday I helped unload the shopping. That is way, way too much for me in a week. I know that I should do a maximum of three things per week. But sometimes it just doesn’t work out like that. Life is just messy.

However, as a result, I have had to cancel everything I’m doing this week. It feels as if I’ve had the flu. I drag myself out of bed at about 10.30 am. Can’t wait to get back in there and just sleep. Standing up and walking to another room leaves me shaky and aching. My brain is just not working properly. Haven’t picked up my knitting or my guitar for a week now. And I feel sad about that, even though I would feel much worse if I did try to knit or play and it went badly.

We like to try and answer the questions on University Challenge, and award ourselves one point for each correct answer, as long as we actually say it before any of the panellists do – including when they’re discussing amongst themselves what the answer might be. Well, unsurprisingly, on Monday night I did very badly. But I’m not going to beat myself up about it, because I’m in the middle of an episode.

And I’m even more clumsy than usual. I managed to spill a full glass of water all over some magazines and stuff on the table next to where I sit in the lounge. Involved two large napkins, two hand towels and a teatowel to soak it all up. But it was only water, and I didn’t actually break the glass.

Some days I can actually shower and dress, other days I just get out of bed and slob around in pyjamas or old “working” clothes (an old t shirt and very old paint covered trousers). I haven’t been able to wash my hair for three days now. Usually I wash it every day. I’m hoping I’ll have the energy to wash it today. I do like it when I’ve showered properly, I feel clean and I smell nice. But it’s just such an effort that I need a long sit down afterwards.

I can cope with reading for short periods. I can play Solitaire on the computer, or my tablet. But that’s it. I was planning to do some baking in the new toy (the Thermomix) but that’ll have to wait.

And next week I only have to see the doctor on Monday, and the counsellor on Thursday. And that’s the way I’m intending to keep it.

And that’s about it really. I don’t intend to sound self-pitying, so apologies if I do. This was really just to blurt out how it feels during an M.E. episode. If you’ve made it this far, thanks for reading. If any of you have M.E. I send hugs and sympathy.

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Thinking aloud

Well, we bought the Thermomix. I’m going to make some pizza dough with it later on, and hubby has already been using it. It’s wonderful.¬† It’s an extremely fancy, computerised food processor which can cook as well. Am planning to make a carrot cake next week, and it should be much easier and quicker than it usually is.

Haven’t been able to knit for almost a week now, too tired and my hands are sore. Maybe tonight. We’ve also been watching Breaking Bad, and it’s just too exciting/fraught to knit anything remotely complicated while that’s on. But last night we watched the last two episodes of the final series. Exhausting. Excellent. We’ll miss it though.

And the counselling I’ve been having is going well. The counsellor is a wonderful woman. Understanding, listens to me, and makes me think/reflect about things. I’m able to celebrate all the good stuff in my life. I think I’ve always appreciated the good stuff, but actually saying it out loud really helps affirm it all. She has used the analogy of going up in a hot air balloon, and leaving the bad stuff behind on the ground. I’ve added to that, in my head, so that all the wonderful people in my life are extra/auxiliary balloons, lifting me higher.

I usually go to a knitting group on a Saturday morning – sometimes I go to the Thursday morning one, but counselling¬† takes up Thursday mornings at the moment- but today I’m not going to do anything. Can’t even be bothered to shower and dress properly. Might walk round the garden in a bit (that takes all of thirty seconds) because it’s a lovely day.

The cat had lost weight when she last saw the vet, so we’ve been feeding her more every day (now two sachets each day) and I need to take her to be weighed again at the end of next week. She looks healthy though and has plenty of energy. Sleek, glossy fur, eating well, killing small defenceless things (a mouse, so she’s doing her job). She purrs loudly, despite initial resistance, when I pick her up to cuddle her and puts her paw gently on my face, so I don’t think she minds too much.

The guitar playing is improving slowly. I can’t strum and sing. I can strum, or do one chord per note, and sing.¬† I’ve taught myself one song, and learned four others from the teacher, and practise most days. Almost every day, really, but the last two days I’ve just been unable to even think about it.

So for the next few days I’m not going to do anything big. I might start the next stage of the knitting project (if you’re a knitty person, I need to pick up the stitches for the sleeves – it’s a cardigan knitted top down in one piece, so the sleeves are knitted in the round). May practise the guitar, or maybe leave that till tomorrow.

I currently have the fan blowing cool on my face, a cup of tea beside me, and I think it’s time I did a (quick, easy) crossword. Laters, guys.