Wednesday 12 February 2020

NICPM Update // 12th February

So it's been a while since I shared an update on how things are going (and I can't believe that it's February already!)

If you didn't read my post from last year we managed to get funding from my local funding body, the CCG or Clinical Commissioning Group, so we got another 8 weeks for me to stay on here and my discharge at present is set for the beginning of March.

Things are a bit same old. It's still quite challenging physically and emotionally and some day/weeks are more difficult than others. The latter so at present.

I'm anxious about discharge as for so long I've struggled to get the support I need and then I come here for quite a long time with 24 hour care and support and extensive work with all the different people and I'm worried about losing that and going back home to nothing but the staff have reassured me that that won't be the case. 

Even though it's been a tough I'm making good progress and I'm doing things that I never imagined I'd be able to do again and I hope that continues at home so that I can hopefully do voluntary work and go back to University etc.

There are still some things that I'm finding hard. The first one is that my symptoms are still present and as I do they can flare up more. Staff say that sometimes that symptoms can be the last thing to ease and I hope that will happen, especially my difficulties with sleep pain, incontinence, migraines, non-epileptic seizures as well as my cognitive function, but some of those have started to ease off.

My daily plan helps me with pacing giving me periods of rest and activity which we review weekly.

Last week we took a trip home for the day to do an assessment. I went with my physio, occupational therapist and key nurse. It was a productive but exhausting day but having a cuddle with Flop was the highlight.

My occupational therapist has been looking at voluntary things I can do back at home as well as activity groups.

I'll leave it there as I'm aware that I've written quite a bit and I'm needing a break from typing.