Breakfast club is where we go to practise managing feeding ourselves. There were 3 of us: me, Ken and Babs. I think they have had strokes, but not sure. We also had Annie and Stella, the OT, watching, helping and assessing. I managed to pour my Bran Flakes into my bowl, add milk and eat it, as did K and B, although B needed a bit of guidance putting the sugar on. Then Ken and I took turns to go over to another table and fill the kettle, boil it and pour it into the cup (having got the tea bag out of the jar and into the cup first). Then add the milk (undoing the top of the carton, pouring, replacing lid). It’s quite interesting, as I always use making a cup of tea as an exercise when we have work experience students to see if they can list all the steps and identify the risks at each stage and how to minimise them. Sensibly, Stella carried the cup back to the dining table for me as carrying a cup of hot tea and wheeling chair at same time is probably a risk too far! I found out that it is policy only to use full fat milk unless patients specifically asked for green, on the advice of the dietician.
Then B and I had toast, which we buttered for ourselves (patients not allowed to use toaster because of problems with people setting off smoke alarms) and I had marmalade. We chatted while we had breakfast. Ken talked about his time in the army and that he was going to his daughter’s for a few weeks. B talked but unfortunately, she is muddling up her words, so it was difficult to understand her- but the expression and tone in her voice was there, so we nodded, agreed, laughed when we thought it appropriate. I actually quite enjoyed it. I wheeled myself back to my room (feeling a bit guilty about leaving the clearing up, which I could have helped with, however, again, patients not allowed in kitchen).
Had my hair done again by Gerry. M was also having her hair done – it is her 90th birthday today. After I’d had mine washed, wheeled out into the day room to have it dried and was positioned next to M, who was under the drier. Gerry asked if I could talk to M as she was asking to come out as it was too hot. Gerry explained that the staff didn’t like people having wet hair, as they might catch cold, and that it wouldn’t be much longer. I kept an eye on her, and kept saying that it would only be a couple more minutes. M then told Gerry that she usually just had it blow dried and Gerry said that she wished she’d said that before, as she’d asked for a shampoo and set. M also kept looking out for her visitors who were taking her out for lunch. My finishing touches were delayed so that Gerry could finish M off – no problem, but I had to keep an eye out to tell M if her visitors arrived as she didn’t have her glasses on and thought anyone going past was them.
Diabetes nurse called in to review sugars again. She wants to get my afternoon/evening levels under 20, so she’s upping the morning insulin again to 38; but when the steroids come down (should be fairly soon), the insulin can come down again.
I was a pit peckish so I had one of the apples Dad brought me yesterday – very nice.
I started my application for a blue badge! Which seems a bit of a palaver and I have to keep ticking the “other” boxes and giving details of my situation as it doesn’t fit neatly into the boxes they have. I have given the contact details of the NMO team (sorry Sandra and Rosie!), and the physio team. However, I had to ask Sian to find me details (national insurance number, driving licence number, the dates I went into and was transferred to various hospitals), which she and Julio did very efficiently. Then the damn site shut me out as I had stopped when lunch arrived, even though I pressed the “extend time” button. So, having to start all over again.
Pre lunch sugars (by me 16.8 – extra apple and a rich tea biscuit). Blood pressure a bit low at 98/56. Had salmon fish cakes, mash and baked beans. Once again, there had been no fruit so I asked if there was any jelly. Luckily, there was, so I had that. I can’t understand why jelly never appears on the menu.
Watched tv for a bit, and then went to loo. Success! Back to watch Chef’s Protégée and James Martin.
Stacey arrived to take me to physio (well, I wheeled myself and she followed). Comment that I was wearing appropriate clothing this time (previously very long trousers that I kept stepping on or long dress where I still couldn’t see my feet, but today I was wearing jogging bottoms). Then we did a lot of standing up and balancing. Still can’t quite get the hang of it as you have to lean forward an awful lot. My heels keep coming up instead of my feet staying flat, but as I can’t feel or see this, it’s difficult to know what’s happening and I have to be told. It did get better during the session. More putting blocks on the stand without holding on. Also, I can’t tell if I’ve moved forward a bit and am leaning against the table, or back and am leaning against the bench, so again have to be told. However, progress is being made.
We then did a lot of getting from bench to walking frame, moving to chair and sitting down. I am getting the hang of moving and placing my feet and the frame correctly without looking (just by thinking as can’t feel) and was managing that quite well by the end of the session. Really going to concentrate on this so that I can transfer from chair to loo/bed/whatever without the cricket – but need to let whoever is with me to look at my feet position and let me know if it’s not right so I don’t have to look down, which is when the balance goes.
Back to room. Started doing the update so that I didn’t forget anything! Was joined by M, who said she was going to “pop this through my door”. It was one of her birthday cards. I asked if she’d had a nice time, and she had, but she was after a small sherry and a little nap as she couldn’t sleep as it was so noisy. I must admit, I do have a certain amount of sympathy! I was able to give the card to the domestic lady, who was going to drop it back to her room discreetly.
Then had visit from Stella the OT to talk about a home visit. This involves me going home with her and probably Annie in hospital transport, and see how I get on. I will probably be loaned a cricket, but it can’t be used with the stair lift. I will also be having carers (how often and when will depend on how we get on. It will be in the morning and evening, but not sure about during the day). The equipment I will need (perching stool, possibly shower stool, don’t know what else yet) will be delivered a day or two before. The only downside is that the visit is likely to be next Thursday, which is the day I was hoping to go home. Disappointing but, to be honest, I’m not sure that I would be competent enough with the frame on my own before then. Never mind, better safe than sorry!
Carried on playing some games, thinking about the blue badge application, and then pre supper sugars were 22.9. Don’t know if the jelly was sugar free as it came already out of the tub and in a bowl. Also, I had another biscuit. And exercise can put them up. Supper was mushroom soup, then smoked mackerel salad and cheese and biscuits. The very nice staff went and buttered me a slice of brown bread from the kitchen as they’d run out, and the drinks lady offered to go and microwave me some milk when I asked for a milky coffee. I said it was ok, cold milk was fine. The domestic lady (I must find out her name) was complaining about the mess that visitors had made in the day room – crumbs (presumably form the birthday cake), which wasn’t too bad, but also mud walked in, which she was cross about. So, if you visit me, can you make sue your feet are clean, please?!
Sat and watched the news and Points West, by which time Juli had arrived. He showed me the video of the newly installed stair lift (with our big Italian Job teddy strapped in!) and then we spent some time trying to transfer it to my phone. Went to get a drink (having been told off for not putting it on the board in case there was a fire). However, when we got to the machine it was out of order. A man told us there was another one in the other part of the hospital in the MIU, so we had an explore down the scary corridor and through the other bits of the hospital to the MIU, where we found the waiting room with the drinks machine. And a soft drinks machine that unfortunately was mostly empty and what drinks there were, were all full fat, so my idea of buying a 7up free was dashed. Never mind. Juli told me about work today and the meeting yesterday evening, and then we made our way back. I showed him one of the leaflets I’d picked up at Oxford as it had occurred to me that although a mention has been made of a pressure cushion for the wheelchair, nothing’s been said about one for the bed. I don’t need a whole one, but these are micro beads cushions of various shapes and sizes, so we may need to get one of those. I’ll have to ask someone about it.
So, Juli has just left. It is quarter to eight, so I’ll wait for a bit and then ask to go to the loo, and then sit up a bit longer before going to bed. I know to look at where the leg bag is positioned, now!
Goodnight – talk tomorrow.
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