Monday 16 March 2020

NICPM Update // 16th March 2020


As my discharge looms (end of next week) my anxiety grows more and more, but I've had a good MDT (Multi-Disciplinary Team) meeting this morning with my Dad and step-mum present and I'm starting to feel that once I'm home I will [hopefully] be getting the support I need to continue progressing as opposed to the little support I had before.

I will undoubtably miss the wrap-around support here which I've had 24/7 and people around the staff and other patients for 5 months now but the team feels I'm ready to continue my rehabilitation at home.

Things aren't prefect; I wanted to leave here feeling like I'd accomplished tasks perfectly but I still have a way to go with my rehab and I still struggle with tasks. I still have dips and bad days or high pain/fatigue days or non-functioning migraine days etc and I still have a lot of symptoms that I'm slowly learning to manage through grading and pacing but I've come a long way compared to when I first arrived here.

Since my last update we did get a second extension for 3 more weeks and that has been used to (a) find continuing support at home and (b) work on more rehab tasks like leaving the ward, cooking, being responsible for my medication by setting an alarm for my medication and asking staff to bring it to me etc and that will continue next week in my final week.

As Dad and my step-mum have come today for my MDT I'm going home with them for some home leave coming back Sunday. I'm feeling less anxious about home leave now and I look forward to the quiet and seeing Flop and I plan to do some crafting. (Hopefully I'll do better with my medication taking this time.)

Yesterday someone I know who lives in Leeds came to visit which was lovely of her and we had a nice time talking and playing Bananagrams - I epically lost.

I probably won't do another update but I might do a reflection on my time here and once I'm settled let you know how I'm doing. Equally I want to do less health related content on my blog and YouTube channel and focus on all aspects of my life.


I had a nice home leave. Lots of cuddles with Flop and perfecting my omelette making. I mostly spent my activity periods sorting through m craft things finding things that I can donate to the ward. I kinda over did it ( keep forgetting to set 30 minute alarms on activities). On the way back to the ward I sat and crocheted (is that even a word?!) everyone on the ward a coaster. Then this morning I was counting ensuring I'd made everyone a coaster but I could only could 7 and couldn't think at all who I was missing until I realised that the 8th person was myself!

I'm quite tired today but as usual it will just be a case of 'see how I go' and just try my hardest with my daily plan.

To say I'm anxious about discharge is a massive understatement but I'm going to make the most of this last week and just take each day day-by-day; hour-by-hour.


(my bedroom at the NICPM)

(my noticeboard in my bedroom)