Monday, 2 September 2019

One Second Every Day - August: Week 5 // 2019



Monday 26th August

PJ kinda day. Got up quite late this morning. I had a seizure last night mid brushing my teeth so my energy was extra zapped. Dad and I had a game of Rumikub and then we had lunch together. I need to work on my pacing and resting. This evening I sat on the sofa and made some word searches to go into letters to pen pals, but I forgot about pacing myself and got really tired but now I'm struggling to sleep.



Tuesday 27th August

Hardly slept at all last night. Part pain pat insomnia. The ironic hing about M.E. is that during the day you're so exhausted and fatigued yet come night time sleep just doesn't happen. I need to try harder at my bedtime routine. I think today I'll try dong some reading about pacing, activity management and sleep.

Had another pj day. I spent too long on my laptop/phone again!
I got a lovely painting in a letter from one of my pen pals today. My noticeboard is very nearly full.
This evening I managed 10 minutes of tidying and Dad's put a couple of boxes of things in the spare bedroom for me today to go through and bin or put away this a) clears th floor space in my bedroom so it's more calming and b) the temperature is cooler in the spare room.
I've done a little reading on activity management. I'm going t try and keep a note of activities to work out my activity baseline and I'm also going to try and have a proper rest/nap after lunch as I read to sometimes using yourself through to day and you get to bedtime and you're overtired and therefore have difficulty sleeping.


Wednesday 28th August

I had a nap this afternoon to see if it would help me sleep at bedtime as I read that getting overtired can cause problems sleeping at night. I struggled to get off, and eventually I did drop off and I slept well.


Thursday 29th August

I slept well, though I was awake at 6am with a headache but I managed to get back off to sleep for a couple hours before my alarm went off. 
I didn't manage to get much rest today. Yesterday I got asked if I'd be interested in speaking to ITV about the changes to Blue Badges (disabled parking permits) and I emailed ITV back to say I'd be happy to help. I got a phone call and they set up for someone to come round today. So at 4pm I had a journalist come round to film me and speak about my Blue Badge, how it helps me and my thoughts on the changes. Last month I did a blog on the subject of Blue Badges and the proposed changes. The filming took a while and I was exhausted after but I didn't get much change to get a proper rest especially as I have to get ready for going back to London tomorrow (I was there last week). Thankfully I don't have an early pick up time but I still want to get up early. I'm shattered so I how I'm not over tired and will struggle to get off to sleep.



Friday 30th August

Had a long day today with another appointment in London. Today was a gastro appointment. Thankfully it wasn't an early pick up from patient transport and I didn't have to be up stupidly early but it meant I was home late.
The patient transport crew was nice and looked after me well. There was a worrying 10 minutes after my appointments when all he lifts stopped working and the patient transport crew was looking for the stairs to carry me down in my wheelchair but thankfully one lift started working again and we made it downstairs.
Whist we was waiting at the pharmacy I had a seizure but I was in safe hands. At least on the patient transport ambulance I can lay on the stretcher and sleep.
When we got home they made me a cup of tea and ensured I was okay.

Saturday 31st August

Had a pj morning until my carer came and I got a shower and hair wash. I then had a chilled out day and had a nap. Then at tea time I had another carer come and she went to pick up my medication from the pharmacy as it could be delivered on Thursday.
The evening was difficult, I had quite a big meltdown.


Video Description

  • Monday: creating my own word search puzzles
  • Tuesday: Darkness outside the window with flashes of lightning
  • Wednesday: Turning the pages in my sticker file
  • Thursday: Turning on a light switch
  • Friday: View looking out the window from a laid position in the patient transport ambulance
  • Saturday: Opening an instant latte sachet

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