M.E. diary

Testing myself

I woke up early this morning feeling 50/50. My bedroom is a dust mountain and i really should change my sheets.

My brain immediately told me i couldn’t clean the whole house today and i had a wave of tiredness wash over me in confirmation. So i stayed lying down and meditated on the problem. All my life I’ve had to lie awake in bed each morning and think about the day behind me then the day before me and then i could get up. Doing this put everything in perspective and i could then forget about it. Id plan my day ahead and up id get. It wasn’t until i started taking  Dosulepin, 25mgs 2 hours before i wanted to sleep, a month ago and had my second sound, restful nights sleep in years that i realised i couldn’t remember the last time id done it.

The first great nights sleep was about 4 months ago when id spent most of the day shopping and lunching with Jon. It was a really relaxed day with no stress, no undercurrent caused by my tiredness, and i bought myself a new pillow (thinking it was my pillows keeping me awake!?!). In hindsight i can see that i slept well that night  because 1) i expected to, 2) id stayed relaxed all day and hadn’t gone into adrenaline overdrive, 3) I had a placebo pillow. Hindsight is a wonderful thing and id say the majority reason was 2). This taught me a lesson but i only really understood it properly whilst i was meditating this morning. I need to stay relaxed and calm and do everything possible to keep adrenaline levels down. Which means that its better to do things in small bite size chunks (rather than eat everything in sight and be too stuffed to move for days).

So, im testing myself today and until i have seen my O.T. I have a new management plan – 1 day at a time, 1 task at a time, 1 stage of task at a time. My plan is to ONLY clean my bedroom and to do it in stages. The first stage is to change the sheets so that if i do feel exhausted after that at least i have a nice clean bed to get back into – ahhhhh blissssss……..

Later …………. hmmmm ………….. well i faltered at the first stage. I went downstairs to get sheets from the airing cupboard and as i passed the hoover on the way up i decided it would be energy saving to carry it upstairs now instead of making two journeys. Id already been down to the kitchen to get polish and a duster so that was down two flights to the kitchen, back up to the bathroom and then up again to my room with the hoover and an armful of sheets, duster and polish. New lesson learnt – its better to slowly carry up one thing at a time than exhaust your body by using core muscles heaving what would probably be too much for a body builder!! So im resting and writing but actually need to lie in my newly made bed and just rest for a while. Yes, yes i know! I made the bed when already feeling the strain from the heaving so my morning hasn’t gone exactly to plan but i have learnt something and im now going to eat one of the apples i also brought up with me and read for a bit. Because of course my other plan was to have a bath and wash my hair if all went well with the bedroom plan and if i dont rest im not going to be able to do that without making myself ill again.

Ok … so its now 15:30 and ive read a bit, talked on the phone a bit and then decided to make a stew for my Jakeys tea coz hes away on a school trip til about 8.30 and will be starving when he gets home. Ive just realised that i cant use a potato pealer any more because it takes too much energy to hold the veg and pull the peeler over the skin – i think its because you have to hold on really hard to keep both things in your hands. I can only do it with a knife, which takes 10 times longer but uses so much less energy. I now ache all over and my glands are up 🙁


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