- Monday 18th June - Strange start to the week settling back into routine. Watched a bit of TV and wrote out some thank you cards to people who sent me birthday gifts. Not much to the day really. Had an early night but waited up in bed until Dad came home then went off to sleep. There's elements of being in hospital that I miss that I'm struggling with as I hate being in hospital but i miss not struggling through my bad days or just simple things like when my hands go into spasm so I've emailed my Bluebird (care agency) nurse for a catch-up as I haven't seen her for a while any way; it's all been phone calls and emails lately so hopefully she'll get back to me tomorrow.
- Tuesday 19th June - Today has just been one of those l-o-n-g day that you just want over with. Myoclonic spasms have been playing up, not just in my right arm but my whole body too and so its been 'one of those days' and a day where you're just tired and in pain and waiting for it to be over with. i've done some expenses admin work so feel up-to-date with that and got round to ordering a few things, some boring medical supplies but also some new washi tape and blank cards to have a go at some of the ideas in a book I got for my birthday called '20 washi tape cards to make'. Now it's bedtime so I can finally got to bed. Tomorrow I plan to get a bit of my bedroom tided as my mind feels better when it's done. I've also got some blogging to get round to as well. My Bluebird nurse got back to me and she's coming to see me next week so that will be good.
- Wednesday 20th June - My carer normally comes int the morning but she got held up with her previous customer who needed a ambulance. Dad came home at lunchtime as he had a medical appointment so we had lunch together. At 3pm I had two people come from the Wellbeing Service and they did and initial assessment and asked me what support I would like and gave me some useful contacts and are going to help me with a few thing and they're going to come back in a few weeks.In the evening I went to see a play called 'Dark Harvest' - I was originally going to go with my Uncle and his girlfriend Holly as my birthday present but my Uncle wasn't feeing well so one of their friends came as we all got along. The play was really good; I have seen one in years and I had a really good time and the ending of the play was not what I expected.
- Thursday 21st June - Another day where I was just happy for it to be over with and high levels of fatigue and subsequent pain played a big part so the day was spent dosed up on pain relief and rest. "M.E. is much more than 'just being tired'!" I think it was an accumulation of being in hospital last week then coming back and getting back in my usual routine and my body just went into crash mode.
- Friday 22nd June - A day of lovely nothingness so I was able to rest and pace myself. The morning was a bit slow going but I set my alarm clock to give myself a lay in but not over sleep. Spent the morning chilling out and watching TV making the most of having the hose to myself. The afternoon was a bit more productive, I did a chapter of college work which means i only have the questions Dad's going to help me with at the weekend and one very short chapter left so I should be all set for me deadline on Wednesday hopefully. I also moved my pain clinic appointment to a telephone appointment which was was so much easier than having to leave the house and get patient transport etc and to be honest there was little to discuss. I'm waiting for for a meds review and I'm not going to be discharged from them until I've been handed over to the new local complex needs team so at least there will be a transition and to be honest I find the local pain team a bit wishy-washy and not specialised enough for my needs so I don't find them particularly the best if I'm honest. In the evening I watched some more TV and then Mandy and I watched Men In Black 2 which was a good watch.
- Saturday 23d June - Set my alarm again for a lay in but not to oversleep like I have been doing. I did accidentally go back sleep for a little bit, but not for too long. I watched TV for a bit until Dad wanted the TV to watch the football so I thought I'd get on with some blogging and sorting out some Etsy shop orders and if I have the energy some more tidying in my room.
- Sunday 24th June - Made it to church for the first time in a few weeks. Rested and watched TV most of the day and got a letter written. I've been stuck on a piece of my distance learning work so Dad sat down with me and helped me with that and I decided just to do the final chapter and finish the Module off and submit it in rather than leave it until Wednesday as my brain was on focus mode. I had a little wash and headed to bed early ready for the week ahead.
Monday, 25 June 2018
One Second Every Day: June - Week 4
A cceptance of what you can and can't do B reathing exercises C ommunication aids D istractions E ssential information, such you...
GUEST BLOG by KT about her book and how she's using literature to raise awareness of ME/CFS // ME/CFS Awareness Week 2019Hi I'm KT and I'm using literature to help raise awareness of ME/CFS! I was born in 1973, East Yorkshire, England. During my...
Today marks he beginning of ME/CFS Awareness Week. Action for M.E. have asked me to put together a short 5 minute video to talk about ...