Friday, 23 February 2018

The day after yesterday...

I struggled to get off to sleep due to pain and my head was hurting a lot after banging falling to the floor. Eventually sleep came though in the early hours.

I gave myself a lay-in to give my body a rest and was woken up to a FaceTime from my friend. I then called the Therapeutic Community (TC) just to let them know how I was and they was aware about my bad experience from another TC member who had read yesterday's body post. I still feel unsure going back to the TC as my seizures get int he way so much and I struggle physically to get myself through the day there (which probably isn't helping my seizures), but on the flip side I need the TC.

I just rested today - watching TV, writing a reply to a pen pal and sorting out my certificates to decide what distance learning course to do next - I've signed up to study 'Understanding Autism in Healthcare Settings'; even though I'm not able to continue volunteering at this moment in time I'm continuing with the courses ready for when I'm well enough to go back to helping out at the children's hospice. I'll post more at a later date.

I also did some practical things: 

  • I managed to get a hold of my neurologist's (Professor Edwards) secretary and explained the urgency of his response to my emails and how my GP does't see FND as a "real" illness and is therefore leaving my care up to him. 
  • I also tried to call the admissions co-ordinator a few times to try and chase up my video telemetry referral which was made in July but all I got was the voicemail, which is what I got the other week when I tried.
  • I also called PALS (Patient Advice and Liaison Service) to raise a concern about my "care" in A&E yesterday. I sort-of gave up on contact PALS about my "care" in A&E as nothing was changing but after yesterday I decided to give it another shot and I've also decided that this time if nothing comes of it I will make it a formal complaint which feels a bit daunting but my "care" in A&E just simply cannot continue.
I also have my deliveries from the continence service and the pharmacy, though annoyingly my increased dose of Clonazepam wasn't in my tray so I had to call the GP practice and they didn't get back to me so I'm going to call the first thing on Monday morning.

Half the time I feel like my own personal medical secretary!

Now though for bed in my new zebra pj's and Harry Potter playing me to sleep.

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