Monday, 2 December 2019

NICPM Update: 2nd December 2019

I knew rehab wouldn't be easy, but I didn't think it would be this hard; especially emotionally. I've had my fair share of wobbles and times where my body rebels and I just can't physically or emotionally take any more and I just have to try and trying is all I can do and what I have been doing even when I feel like I can't carry on.

When you're in the midst of something you became so focused on the moment that you forget to see the journey that you're on and without really realising I've slowly stated to make progress which should usually be a big 'woo-hoo' moment, but actually for me, it's scary. 

Just before I came here after 5/6 years of fighting I finally got a care package and I'm scared of losing that when I leave here, I've also been thinking a lot about the 'what next' plan, such as what services like an M.E service for example I'd like to be under as an outpatient to continue the support here. Staff try to steer me to just think of the day ahead of me but discharge still worries me a lot.

I'm also not an assertive person, but I'd like to be. There are times when I'd like to be more assertive about my care here when staff suggest I do something like my breakfast routine ad when I'm having a bad day I'd like to be more assertive in saying that today I don't feel able to do my breakfast plan, or at least parts of it.

I saw my Occupational Therapist (OT) this morning and he wants me to wake up at an earlier time, again me not being assertive I tried my hardest to say how much of a struggle that would be but later on today I was crying my eyes out to the staff member doing a 1:1 (individual time with staff) how much I'm struggling, how difficult mornings are, how I don't feel I can be assertive, how much my body is struggling and how difficult I'm finding things emotionally.

Today I've had a few seizures or 'non-epileptic episodes' which on top of showering I'm looking forward to getting into bed tonight, especially now I have my duvet back (it had to go in the washing machine at the weekend which then broke) as it's starting to get colder now.

Yesterday was eventful, but not the good kind. I stood up in the bathroom and my hip joint slipped out of place and I landed on the bathroom floor furthering ame to dislocate my shoulder (my joints go out more than I do - an insiders joke amongst those with hypermobility). Annoyingly here the emergency red cord are on a long plastic rod which doesn't reach the floor and it was during mealtime so all I could do, like when I've fallen before is just call out for help. After a while another patient heard me and asked out if I'd fallen over and she went and got a member of staff who called for an ambulance. With the help of some entonox (magic gas which if used sparingly and with great care I believe more patients with conditions like hypermobility disorders should, if felt necessary, should be able to have a supply of at home to reduce the need for ambulances and help patient self-manage their condition, but that's a conversation for another day), and with the help of the paramedics and some manipulation (this wouldn't be the case if you weren't hypermobile, able to reposition my hip; thankfully it had only partially dislocated. It's difficult as hypermobility dislocations are different in some ways to 'normal' dislocations so often they're not as well understood as was the case yesterday. But my experience with the paramedics yesterday was thankfully much better than the first experience I had when I first arrived here.

Anyway nothing is much new. My weeks are busy with OT, physio, psychology and sessions with staff as well as activities. I especially enjoy Boccia but tonight we did origami whch was good. Another patient taught us all how to make flowers. Last Friday was the final sensory group series session and we made aromatherapy sprays to make a start on making ourself a sensory kit. Some of the 'therapeutic activities' I've done with staff or am planning to do are going to Tesco, cooking (scrambled eggs on toast), and going for coffee. In my 1:1 times I also like going off the ward outside.

Not this weekend thats jus been but the weekend before my Dad and stepmum came and we went to Leeds Art Gallery and we went for coffee which was nice.

Today I received my bear made by Amie who runs Bear Has for M.E. Amie has Severe M.E and to occupy herself she knits bears for other people living with the condition. I feel so blessed to have come across such a wonderful lady who is so generous with her money time and especially her energy which I know having M.E too is so very precious.