NICPM Update: 23rd November 2019

Not much of an interesting week. I've have various sessions with various people including Occupational Therapy, Physiotherapy and psychology as well as seen drs and spending time with the staff in my key team.

I've had my fair share of wobbles but I'm trying to talk and be honest and open. I also feel blessed to have some good friends and pen pals.

Saturday 9th November

Yesterday we did the printmaking workshop again. I made a card for another patient who's not well enough to come along. I had a chat with her in the week and she's lovely, all the other patients I've met are. It's also so wonderful being surrounded by staff and patients who understand. I don't know what illnesses the other patients have be we understand aspects like how tiring having a conversation can be, or struggling with the lighting and noise in a group.

Dad and my stepmum came Friday evening which was nice. I now have a plant for my bedroom and my own hospital friendly pet guinea pig. I've also got more nail polishes but I'm not sure where some of my other colours have gone? We played a few games of Rumikub which was nice.

Today I started my 'daily plan' it's basically a daily timetable. It was exhausting and frustrating when I was meant to be having my precious rest periods and the housekeepers disturbed me. By about 2pm I was struggling but I worked out with my nurse that I had quite a bit of rest scheduled after 3pm and ½ hour after tea (though this got disrupted) so I felt better knowing this. In my 2-3pm slot I had some individual time with staff so we decided to venture outside.

Friday 22nd November

Okay so I have't updated in a while. Lots been happening and I've been super exhausted.

I now have a 'Daily Plan' which is basically a rough daily schedule, but obviously things happen like a bad migraine and the plan doesn't quite happen. To help with my shocking memory I put my Daily Plan on my iCalendar so at the start of everything I supposed to be doing like 'rest', or 'snack', or 'bedtime routine' an alert pops up on my phone/iPad/laptop.

I'm working hard with my physio. In the conservatory they have a pedal machine. So I sit in my wheelchair and I'm clipped in and my feet and lower legs and strapped up and it's power assisted so it takes my feet around and you can add resistance and you can also push and pedal your own legs too. It's a rather fancy machine.

Today I just didn't feel motivated to do my physio but I thought, nope, I'm here to work hard, so I did it despite my lack of motivation.

I knew It would be hard word here but I didn't realise how difficult it would be physically but more so emotionally. I've been feeling quite homesick so it nice to see family at weekends. On Sunday my Dad and stepmum are going to take me to Leeds Art Gallery which I'm looking forward to.

This evening my allocated worker in my 1:1 time took me out. The hospital is on a hill so it's difficult in my manual wheelchair so this evening I went in the ward's electric wheelchair but instead of me controlling it it's controlled by the person that would normally push my wheelchair (if that makes sense?)

It's not overly exciting being here, well I'm not here for leisure. I have sessions with my occupational therapist quite often, physiotherapist and psychologist (one birthing she's helping me with is how my health affects me emotionally which I've always struggled with but not really had anyone who understands, but also how my emotions can affect my health as with a lot of different illnesses).

I'm still unsure how they're going to reduce my seizures?

Saturday 23rd November

The weekends I look forward to but unfortunately I don't weekends fully off. Weekends and the odd weekdays I relish as there's not meeting with OT or physio etc.

I had an accidental sleep in this morning. I got woken up to take my morning meds then nodded off again only to be woken again to have breakfast.

The past few days I haven't managed to get much of my scheduled rest in. Last night I think I struggled to get off to sleep as my body was overly tired. Thankfully I managed to get off eventually.

I'm sleeping a bit better now. Before I was waking up regularly in the night but I'm now having more nights where I'm sleeping trough. I've been trying different things like reducing my caffeine intake and not having caffeine after 4pm (as advised by my OT).

My gastro problems are really difficult at the moment and again I'm trying lots of things to reduce symptoms. I find it hard sometimes when I'm told "just keep trying to eat" which I'm doing and it really doesn't work.

Boccia is a game I really love that we play here and we played that today after my suggestion.

Currently I'm fighting another migraine and it's in the middle of my migraine scale. There's migraines where it's bearable and I can continue as normal and then on the other end is the migraines where I'm laid in the dark and silence with raging symptoms and I can barely function. This migraine I have dancing colours going on and my muscles are very terse, especially my neck and I'm quite hypersensitive to sensory stimuli and I'm feeling very dizzy and disorientated as if I was very drunk without the alcohol or illicit drugs.

So on that note and also with my phone reminding me that it's time to rest I shall post this and try to update you as much as I can but my care here is my top priority.

Boccia