Friday 18th March
Woke up around 4.45 and couldn’t get back to sleep, so listened to radio. Very bunged up, slight headache and sore throat.
Light began to dawn behind the curtains (I wanted to leave them open, but staff have a thing about privacy, so they get shut). If I stretch, I can reach one of them, so half open curtain. Night nurse came at around 7 to do my bloods – 7.5 and then left me in peace. Mentioned that I wasn’t feeling very well, and she made a note.
Breakfast was around 8 – porridge and toast and pineapple juice. As I am a fair way down the corridor, unfortunately the toast was a bit cold, but never mind.
I’d had a bit of an issue last night. I have two charging cables for the phone and iPad - you may remember that Juli went and bought me a new one as my nice long one was taken away to be pat tested. The pat tested one came back yesterday, and was plugged in. However, when I went to check the power levels last night before I went to bed (I usually leave the radio on on one of them) it was very low on the iPad, which had been attached to the long cable. I thought they might have blown the cable while testing it. This would have been a nuisance as the short cable is very short and makes it awkward if not impossible to use the phone or iPad. However, I stretched to an impossible angle and saw that the plug wasn’t switched on at the socket. Duh! A quick request to the aux collecting the breakfast tray and we have power again! iPads now up to 86% and the phone is at 74 and rising. All is well.
After breakfast I fell really tired (that’s what waking up early does for you!) so closed my eyes. Next thing I know it’s 10.30 and I’m being woken up by the nursing assistant for my wash. We discussed what I could and couldn’t do, I told her about the NMO and what it involved. She just washed my feet, back and bottom. I did my “down below” bits myself – another step forward. She explained that they use a different type of leg bag here, and so changed it.
Then I got into the cricket and transferred to the wheelchair and she wheeled me into the toilet and up to the washbasin. She then left me there (with the door open) while she changed the bed so that I could get on with washing my top half. I managed!!! I also managed to wash my own hair by leaning over the basin. Got a bit wet, and kept bumping my head on the rather large tap fitting, but I now have cleanish hair (the rinsing wasn’t brilliant).
Finished getting dressed (same clothes as yesterday) and back into the room. Pretty much left on my own then (no problem with that) where I checked emails did some browsing etc. I don't think that there will be physio in the rehab room today as they have been wheeling/walking lots of people in and out all morning. I have my exercises to do, and it is important I do these core ones as well as the standing ones as I have to build up the strength and also work at getting the feeling back.
I am getting the feeling back – or at least something is happening as I frequently get these intense pins and needles feelings in feet and legs and the feeling of having very tight support stockings on, and it feels hot. I also have this bizarre feeling that my legs are rising up and floating ( which they aren't!). Mermaid again!
Pre lunch sugars 12.8. Lunch (still someone else’s choice) pineapple juice (that’s clearly the carton opened today!) followed by cottage pie with mixed veg. For desert there was only a choice of apple pie and custard or arctic roll . I again decided to live dangerously and have apple pie and custard. Once again, sod the sugars. They actually weren’t too bad yesterday and within the ranges I have been having, so we’ll see what they are like later on.
Bp 98/56. The OT assistant has just come to say that they are ordering a wheelchair for me for use here and at home if I need it. The computer is saying “no” as there is no street name. We are trying various options, so we may start living on Braydon Street, but then that might not fit with the post code checker. Bureaucracy!
Quiet afternoon. Physio assistant came and checked I was doing my exercises and then gave me a folder that is patient information with my appointments in it. I have one long session a week, a shorter session a week and a session with the occupational therapist a week. I have put my bed exercise sheet in it and I’ll have more info as time goes on. I already have a lot of leaflets about various aspects of NMO, etc. I have been doing a lot of chair exercises (more or less constantly) and am getting quite a lot of pain in my lower legs (a good sign as it shows nerves waking up)
No afternoon visitors, but I don’t mind as Sian and Juli have enough to do in the office without coming to see me twice in a day.
Pre supper sugars 24.3, so the apple pie didn’t have all that much effect. Supper – lentil soup (really nice) followed by liver in onion gravy, spicy wedges (a bit past it) and peas. I like liver and quite often have it in Italian restaurants when we go out to eat (Juli usually has veal). Back to cheese and biscuit for dessert.
Sian and Juli arrived just as the supper tea arrived. We went for our usual walk to the drink vending machine, but only had 30p between us, so Juli had a hot chocolate. The same gentleman was waiting for his wife, but we’d exhausted the conversation yesterday, so Sian tactfully suggested that we go to see the rest of the photos and pictures in the corridors. We went along the corridor, then had a swift foray outside so that I could get fresh air and then back along the “scary” corridor that leads to the other part of the hospital. It has lots of pipes and signs along the ceiling.
Back to my room. Sian did some work and tried doing some banking, then it was time for them to go.
It’s now half past 8. I’m watching That’s so 1984 on channel 5. Some of it I knew was then, but I don’t have Robert’s talent for dates, so there is a lot that wasn’t particularly memorable as specifically 1984.
I have run out of data for the time being, so am restricted in what I can do. (iPlayer is off limits for a while until Sian tells me I can use it again) so I will have to review my watching and listening. Doesn’t matter as I have a lot of other things I can do.
So, at some point soon I shall ask to be put to bed (or someone will come and suggest I go to bed), I will get undressed, washed and nappy changed and then comfy bed.
An early Goodnight!
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