Thursday, 3 October 2019

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

Monday 23rd September

Today's been unfortunately eventful. I had my carer come and I had a seizure in the shower. I then had another seizure on the bathroom floor an another in bedroom; each getting longer in length. By my third seizure it was fairly long so my carer called for an ambulance.
The paramedics came and weren't happy with how fast my heart rate was and wanted me to go to A&E but I knew there would be little A&E can do so I stayed at home.
My carer got me my meds and some lunch and helped me with a few other bits. My care agency wanted her to stay until Dad got home but that would have been hours and all I wanted to do was sleep and there was no point my carer hanging around.
I had a sleep for a while until Dad came home and he made tea (evening meal) and we watched some TV.
I called TASL patient transport to get a pick up time for my appointment in London tomorrow but there was no record of my journey! That got me in a bit of a panic as I felt unsettled with he change of plan but also having to cancel and rearranged my appointment.

Tuesday 24th September

I was supposed to be in London today but there was a mix-up with patient transport so I feel a bit unsettled with the change to routine. I called the Pain Clinic/hospital this morning and thankfully they had an appointment for next Monday - I was expecting to waiting until February/March time!
My mum called to say she was passing by and asked if I was free for a coffee so she and her carer popped round for a short while.
I had a sleep for a while as I've been quite tired today.
My pain levels are still a bit of a struggle.

Wednesday 25th September

Today's been a slow kind of day. I spent a while in my pj's as I had no one to tell me to get dressed and I enjoyed the quietness and freedom of having the house to myself. I had a sleep and then it was tea time. After tea I watched some TV and  then I settled myself in bed with my laptop which is where I am now and I'm feeling quite tired so I'm ready to get off to sleep.

Thursday 26th September

Had my care visit today, thankfully it was drama free today.
One really big positive of today is I got a phone call from the neuro-rehab unit in Leeds to do the first half of my pre-assessment. The nurse started off explained a bit about the unit and the programme and then asking me what my needs are. I was getting quite tired talking especially after having a shower today so she's going to call me back Sunday to do the second part.

Friday 27th September

(Forgot to fill in today)

Saturday 28th September

This afternoon I went out with mum. First stop was coffee. We then went and had a good look around The Range. Totally broke my stationary and craft buying ban but I should have enough to keep me going for a good while. 
We got back to mum and Fred's house (Fred is mum's husband) and I had a rest on the sofa. After eating we sat and watched Silent Witness and it was a nice but super exhausting day.

Sunday 29th September

This was my recharge day ready to head to London take 2 tomorrow.
Felling quite run-down today. For me with my PEM (Post Exertion Malaise - a symptom of M.E.) my immune system flares up. I have come across another name for PEM which is PENE which is Post Exertion Neuroimmune Exhaution which factors in the low immunity response or cold/flu-like symptoms when exhausted following activity.
Unfortunately today the nurse from the rehab ward in Leeds didn't call me back.

Monday 30th September

Managed to wake up on time. Patient transport came on time and we had avoided any major problems there and back.
My appointment/assessment with the Pain Clinic went really well. I felt really involved and included in the conversation and listened to in what I felt I needed and what where my main problems and concerns. We have a plan but it all depends on the outcome of their MDT meeting (Multi-Disciplinary Team, basically lots of different professionals from different backgrounds such as Drs, physiotherapist, occupational therapists, psychologists etc).

Video Description

  • Monday: Photograph of an ECG reading, The paper is a long thin strip which is white and red graph paper and black heart tracings.
  • Tuesday: Looking out the window with it raining outside. Out the window can be seen a lawn with a patch going through, a driveway and garages.
  • Wednesday: Folding a mini envelop. The paper is patterned teal and white.
  • Thursday: Putting a sticker onto a decorated red envelope. The envelop is decorated with white torn paper in the bottom left corner on top is torn patterned paper and another vintage stamp style sticker already stuck on.
  • Friday: Using a wooden stamp to print 'hello' in blue on an envelope
  • Saturday: A small sinclair c5 type vehicle driving in front of us on the road
  • Sunday: Opening the latch to a plastic box
  • Monday: Pressing the 'Level 0' button in the lift