Sunday, 25 August 2019

One Second Every Day - August: Week 4 // 2019



Monday 19th August

Today has been a zonked kind of day. I really struggled = badly to get off to sleep due to pain; I didn't get off until past midnight.
This afternoon I spent a bit of time sat outside. Just before tea (evening meal) I was laid on the sofa nodding off. I'm now feeling a bit more awake after eating but I'm sat here now crying and my joint pain if flaring. I'm just hoping I don't have a repeat of last night. I'm just drinking my nighttime herbal tea and then I'll head to bed to do my new nighttime routine.


Tuesday 20th August

Still stuck in crash mode. (If you haven't read my other posts a crash in the M.E. community is when you go through a period of time where your symptoms are much worse than normal). I've been going through a crash for around a month now and with lots of essential appointments coming up I only know I'll be worse off. I've rearranged to a quieter time what appointments I can but others like my London appointments are unavoidable. Appointments, or activity of any kind leave me exhausted let alone whilst in the middle of a crash.
I had a seizure episode today. At the moment I'm just thankful that Dad is off work and I'm anxious about when he returns to work. (But I'm trying to not look too far ahead).
I had a sleep for a few hours this afternoon and I'm hoping I get off to sleep tonight okay. I feel my body needs a lay in but I'm worried about if I do about trying to wake up in time Thursday as I have an appointment in London then.


Wednesday 21st August

Struggled to get up this morning but I forced myself to as best I could in practise for tomorrow.
The mornings been slow going so far but there's a few things on my 'to do' list today including blogging, seeing if my watch strap is within warranty as its broken and calling UCLH to confirm tomorrow's appointment as I don't want a repeat of June an turn up to find my appointment had been cancelled. I've read had a call for the gastro dept at UCLH reminding me an getting me to confirm my appointment for next week.
I feel like I'm running on empty and I'm not looking forward to the early start tomorrow.
I've spent a long time today creating graphics on 'How to make your blog as accessible for all' for Instagram which I will then eventually type up to make a blog post.
Part of having cognitive problems and autism is you get very engrossed in activities and you think 10 minutes have passed and then you realise you've been sat there for several hours. Normally my watch beeping and vibrating at me reminds me not to do this and to get up, eat, drink etc but my watch strap broke this morning. I've had a lot of replacement straps over the time I've had my watch which has extra features like 12 alarms and rolling timers. When I called to see if my strap was still under warranty the lady could see I'd ordered quite  few straps over time and she said that shouldn't be happening so I managed to get a free replacement strap - bonus!

Managed to through my 'to do' list, yay! It slowly took me all day but it was achieved all the same. One of the things on my 'to do' list was call up UCLH about my test which I'm feeling extremely anxious about and they was very friendly and tried to put me at ease as much as possible.
Even though the day was spent on the sofa I used a lot of cognitive energy and I kinda went into living on adrenaline mode and forgot my pacing and resting as I was so engrossed in what I was doing on my laptop and ended up crashing for the rest of the evening.


Thursday 22nd August

Up early but I managed it and I just paced myself getting ready. I ensured everything was in my bag (I packed my bag yesterday) and I wrote a list of what needed to go in e.g. water bottle in bag, phone plugged into charger etc. I even had time to put on makeup and I was ready way before patient transport turned up so I had time to rest and drink my coffee.
Journey there was mostly uneventful apart from having a seizure and we had our usual stop off at Peterborough. I'm very much looking forward to them getting a Changing Places as the loo there is tiny and there is no room at all to manoeuvre my wheelchair around in. I dread to think how a large power chair, especially people who need tilt and recline chairs manage it as it hardly fits in my petite wheelchair.
Got to UCLH. I was very anxious about the test I was having about my bladder function, or malfunction in my case but the staff where lovely an understanding about my anxiety and they where very accommodating and they let me use the things I needed to help ground myself and we talked about Moomins as the clinical scientist lady and Dr both like Moomins too. I was in quite a bit of pain after.
Had a few seizures on the way home.
I'm now tucked up in bed with the onset of M.E. 'payback' feeling very run down and headachy.


Friday 23rd August

Quiet rest day today to recharge from yesterday's appointment so I've just been trying to take it easy.


Saturday 24th August

My new pens and mandala stencils arrived today! I've recently recovered drawing as a nice easy activity to do. It's also nice to get away from looking at a screen an do something that doesn't involve technology. It's also a nice distraction.
Still feeling quite crashed on top of my crash.
Dad and I also spent some time together. We played a game of Rumikub and then this evening we ate tea and watched a TV programme.


Sunday 25th August

Trying to rest as much as possible. I've done more drawing today but I haven't realised how exhausted I was so now I'm feeling blergh and I need to rest. I'd love to have a nap but it's 6.15pm so a bit late for sleeping as I don't want to struggle sleeping tonight. I also need to learn more an improve on my pacing and get back into my bedtime routine.
I'm also feeling extra blergh because my stepmum put her crackers in with mine in my free from shelf in the pantry so I ate them for lunch and I'm now feeling glutened blergh.
I'm now just watching one last program before I head off to bed get back into my bedtime routine.

Video Description

  • Monday: Time laps video of my hot water dispenser filling up my cup
  • Tuesday: Popping open he lid of my tube of vitamin tablets
  • Wednesday: Working on my laptop on Canva a graphic design site
  • Thursday: View out the window of the patient transport ambulance with a red London bus driving 
  • Friday: Flop a black white and tan guinea pig laid on my lap being stroked
  • Saturday: Colouring in the pen colour chart
  • Sunday: Drawing a line using a ruler and pencil on black card

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