Saturday 19th March
Went to bed at around 9. Had difficulty staying awake.
Not a good night – woke up about 3, had catheter bag emptied, asked for more water and then couldn’t get back to sleep. Quite a bit of discomfort with legs feeling as if they were burning and floating – very odd. No iPlayer so read my book on kindle and played some games. Final ready to drift off at around 6. Woke up again just before 7 and felt a bit better, so put tv on quietly. I must ask what sound levels are acceptable. The tv is a wall mounted one, not like the ones before that were on arms, so no way of using headphones with them.
Pre breakfast sugars 8.6 – a bit high but I did have 2 chocolate buttons and a biscuit during the night. Breakfast was pineapple juice (can’t be good for sugars) with porridge and toast. I think I’ve said before that the porridge is very nice.
Did some bed exercises and then dropped off to sleep again, and was woken up at 10ish. This is getting to be a habit. I was put on the cricket and taken to the bathroom.
****** too much info warning *******
I was put on the commode over the loo to see if I could feel any sensation at all or move any muscles. Or failing that, see if gravity had any effect! Gravity did have some effect, and I think I may have had the first fluttering a of feeling, but not sure. Nappy put on whilst standing up.
**ok now!***
Transferred from cricket to wheelchair and wheeled to washbasin. I had left my wash bag on the side overnight, but it turns out it was the radiator, so everything rather warm, including plastic bottles. I’d had my trousers and socks put on before I got out of bed, but I managed to take my nightie off, wash myself and put on bra and top and then wheel myself out of the bathroom. Nurse impressed!
Watched Sky News and tried to catch up with the IDS and F1 breaking stories.
Also, watched a lot of cookery programmes. Enjoyed the one with Rick Stein in Venice. Brought back lots of memories, and there are some recipes I'd like to try at some point.
Pre lunch sugars 15.8. Lunch pineapple juice (I think I need to cut this out because of the sugars) pork casserole, with boiled potato and loads of green beans. I have asked Juli to add to my contraband and bring in some small sachets of salt (my hoarding does have a purpose sometimes; we have some sachets from KFC, McD, and other places) as the potatoes and beans needed some seasoning. Dessert was cheese and biscuits.
I asked to be put back to bed so that I could do my bed exercises. I tried really hard, but it was rubbish. I have less movement than I’ve had for a while; I am hoping it is something to do with the increased tingling and feeling of pressure that I assume is due to the nerves waking up. I think I’ll email the NMO team and ask (I know they won’t see the email until Monday, but I can always send another one). I also want to mention that I’ve had this being bunged up and sore throat for a couple of days now, although it does get better during the day.
So, feeling rubbish after failing to do any of the exercises I can do by myself properly. Had my bag emptied and the very dark colour of my pee was commented on. This is a warning indicator that I’m not drinking enough, but I’m drinking jugfulls. Bp 99/55
Juli arrived with my hearing aid batteries, loose t shirts and a packet of chocolate buttons (actually he came with 2 but I’m hiding one from myself). I do feel sorry for him as I keep giving him lists of things to bring in and other stuff to take home again.
He did a sterling job helping me with the exercises and then we asked for me to be put back in the wheelchair. Off we went to the Grapevine café which although was shut as far as serving was concerned, the room was open and is used as a staff/ day room. Juli and I sat in the lounge area and watched the Wales/Italy match on the wide screen. I did feel sorry for Italy. From the drinks machine we had coffee (me) and soup (Juli).
Back to the room, and Juli left to dash home and put the horse to bed as Sian is away today.
Pre supper sugars 23.1, which is less than yesterday at this time. Supper was really nice – mushroom soup then a ploughman’s with lots of cheese and an apple. The nurse came to ask if I wanted to go back to bed, and I said it was far too early and I was expecting a visitor.
I have emailed the NMO team but it was bounced back.
Juli arrived back again. He has been e-baying but I will leave it until later to say what he has bought (if he has won it). He tried sorting out the email, but as I copied him in, he’ll just forward it when he gets home. Off we went on our usual trip down the corridor to the drinks machine. The decaf coffee is disgusting, even with sweeteners. Juli had more soup.
Came back to room, Juli did some tidying up for me and then left. I have been asked when I want to go back to bed so I’ve said about 9. It’s very confusing as there seems to be lots of different shift start and finish times with people coming and going.
So, waiting for bed.
Goodnight!
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