Hair today

On March 24, 2011, in M.E. diary, by Sally

I realised this morning that i nearly always have to make myself go out but once im actually out its manageable.

Had a hair appointment today, my hair is my thing, so if you know me you will know that its one of my favourite things to do. I LOVE having my hair done but nowadays its really hard to get motivated and if i could think of a really good excuse i would probably have put it off today, like i did on Saturday. I could have thought of a really good excuse, of course, but i figured id still have to go next week or the week after and i did really want it done. Its a strange thing to have to think about. If i was well id just wake up thinking ‘great im having my hair done today’ rush around getting my work sorted and housework done, id have arranged to meet a friend for lunch weeks ago instead of the last minute. and off id go. Its a blummin’ nuisance to have to think about everything before i do it. It was actually quite uplifting. Lisa, my hairdresser is really positve and easy to be with. I, however, turned into an ME bore which is a bit embarrassing – i really do need to find a short, understandable explanation when someone asks about ME and make sure i dont drone on and on about it.

Just realised i should have taken a photo of my new hair for my blog coz it will never look like this again. Too late now coz ive taken off my makeup and im sorry but i cant find the energy to do that again. Plus, I definitley couldnt put anyone through the trauma of seeing me look as poorly and pale as i do without it.

Having my hair done did perk me up though and what a blooming beautiful day it was today!! Jon rang when i got to hairdressers and i had a few minutes to wait so i called him back and stood outside in the sun – it felt like summer to me it was actually hot!! Car said 19 degrees when i got back into it.

And here at the bottom of the page is a picture of mewriting this post tonight, very tired, with no makeup on  – it could do with a brush but my hair still looks great though and im feeling positive and happy.




Testing myself

On March 23, 2011, in M.E. diary, by Sally

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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Paying for it day 2!

On March 22, 2011, in M.E. diary, by Sally

I slept quite well last night for the first time in about a week but I cant concentrate on anything today. Have got my laptop in bed but ive spent 4 hours looking at an email and staring at a spreadsheet i was supposed to be updating. Have just taken some very good advice from Jon via a phone call on Skype ……. ‘dont do it today’. This is obviously paraphrased because there is no way my brain can hold any info today but the gist was definitely dont do it so ive stuck it in drafts.

Jake away tonight so have managed to make my own tea. Took me an hour to plan it from my bed but i figured that if i grilled some salmon by the time it was cooked id have a salad made and could be off my feet in about 8 minutes – managed to get the energy for that but am concerned that im still using adrenaline to get by until i see Michelle (my Occupational Therapist) on the 30th of March! Bit annoyed because i left my flask upstairs and didnt have the energy to go back up 2 flights of stairs to get it so necessity being the mother of invention i took the kettle and 2 teabags up with me and refilled it upstairs. Feeling embarrassed that im so pathetic today and glad that no one is here to see it.

Just realised that if Jon had been here i wouldnt have touched the garden because i wouldnt have considered it ok to feel like this while he was around. Havent worked out if this is a good thing or a bad thing yet.

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