4th April - A lot of physio!

A good night, after listening to several episodes of The Archers on iPlayer radio to get up to date with the episode causing so much comment. I listened in the dark, ending at half past midnight and finishing my packet of chocolate buttons (not many left, so not too bad).

Woke up for early morning sugars (7.2) feeling quite cold, so stayed snuggled listening to radio and tax story until breakfast – back to porridge and toast. Marmalade run out so had very funny jam instead. Don’t know if it was diabetic as they had helpfully removed the cover, but it was nice. Found the reason why I was cold when they opened my curtains – my window had been open all night. Not very wide ( afety locks on) but enough.

Bit concerned that time was getting on and according to my ward folder, I was due to see the OT at 9, and physio at 10. No one came to get me up and dressed, until the OT arrived at about 9.30 and asked if I felt up to washing my legs and lower half whilst standing up on the cricket. I must admit, I’ve been feeling that I could be doing more in the washing dept, so said yes, let’s give it a go. Put on shoes to get in to cricket, wheeled into bathroom and toileted whilst OT got things ready. I must admit, it was very hard work. I was trying to stand up, and also lean down and reach bits of me that I hadn’t been able to reach since I’ve been in hospital. Felt wobbly a few times, so needed to sit down. For those of you that haven’t seen the cricket, it's a frame on wheels with a sling seat (when sitting on the sling, the frame handle is in front of you).

Eventually got the washing and dressing finished and I was in the wheelchair, exhausted and feeling a bit wobbly. It was gone 10, and I hoped the physios didn’t come too soon. Coffee arrived, swiftly followed by physio. Physio took coffee into rehab room, while I wheeled myself. She confirmed that my official wheelchair is actually the one I am using, not the new one with my name on that is just a pushing chair, not a wheeling chair. That’s reassuring.

It was a very intense physio session (with stops to sit down and have a swig of the coffee). Concentrated on standing up. This is not as easy as it sounds. You sit on the bench with the table in front of you. You have to make sure your bum is near the edge of the bench, that your feet are under your knees, and then you put you hands on the bench and lean forward a lot, then push up with your bottom and straighten your knees, while moving your hands from the bench to the table (whilst not toppling forwards, or sideways). You then straighten up, and take first one hand then the other off the bench. I look at the picture of the mini they’ve put on the far wall, then put your hands down on the bench and sit down in a controlled (!) manner, not thumping down. You do this several times. Then we moved on to side steps. This is virtually impossible. From the standing up, you put all your weight on one foot, then move the other foot to the side, then move the first foot to it. Can’t have the feet too close together (or you fall over), you have to stay standing upright with your bottom in, but I have to look down to see where my feet are as I can’t feel where they are. This means I lean forward too much (trying to see over large boobs and tummy) and so lose the posture and balance. So it’s weight, step 1 foot, step 2 foot, glance down, stand upright. I‘m not very good at it (yet!!).

Then we tried using the frame, using the stepping process. By this time, I was very tired and a bit light headed, so didn’t do as well as I would have liked. The positioning of the frame and your feet in relationship with it is vital, otherwise there are balance issues again. Managed to go from bench to chair and back again. The second transfer to chair was really a huge effort, so we called it a day at that point. Reminded them that they’d said I could have a step to take with me to Oxford and Alice said they would get one out of the store for me.

It’s Monday, so exiled to day room so my room could be deep cleaned. Luckily, didn’t have to be in there long. One of the other patients is a man from Purton that I vaguely recognised. We talked about the lack of physio. He had also been promised intense physio and wasn’t getting as much as he should have. Whilst I was in there, the diabetes nurse called in for the review and agreed to keep insulin dose as at present. She said to go to the pub tomorrow! Back to room where I snoozed, well I tried to do some emailing and watching TV, but I kept finding that I was falling asleep and doing that jerky head thing waking up!

Pre lunch sugars 12.6. Blood pressure 102/61. Lunch very nice – fish in parsley sauce, boiled potatoes and mixed veg, followed by cheese and biscuits.

Did some more dozing and thinking about what I needed for Oxford tomorrow, and texted Sian and Juli what I wanted them to bring in for me late. Felt a bit bad about this, as they were having a bad day in the office.

Alice, the physio asked if she could borrow my bathroom to show some reps. I think they  are getting quotes for hoist systems and stuff – rep was talking about taking out the curtain rails and moving the stud wall. It all sounded quite expensive, but as Alice said, there are a lot of bad backs among the staff from physically moving patients even with things like the crickets and wheeled hoists. I saw how much physical effort Julie had had showering me (see update passim).

Discussion with sister about making sure I had a list of questions for tomorrow, and that I needed to take my lunch time meds with me.

Pre supper sugars 20.9. Supper tomato soup (not very good), corned beef salad (no mayo or salad cream) and cheese and biscuits.

Sian and Juli arrived – I had to meet them at the ward door, and ask to be let out as it was just before 6.30. Went to get drinks, and again had to be let in and door closed as M is wandering. Sian had had a bad afternoon. We talked about work for a bit, then more about tomorrow (as you can see, I am still obsessing about this).

Sian has given me another goal to aim for – there is a mini charity event at the end of the month that sounds fun, so I think we’ll see if I can make it. It involves a breakfast buffet and then tea and cake later in the day at the Attwell Motor Museum in Calne. Need to check that they allow “new minis” as that will be easier as I will probably need the wheelchair and I don’t think it’ll fit in the classic (and I certainly won’t be able to get in the Moke!)

We have also bought a voucher for an afternoon tea – so you can see that I am being very positive (and thinking about non institutional food!!)

Back to my room, got my clothes ready for tomorrow and the bits and pieces I need to take.

They left, and I then did the final version of the questions that I need to ask (in my notebook) and my list of meds. I can’t see the step that Alice was going to leave  for me – I’ll have  a look in the rehab room tomorrow morning, but no problem if it isn’t there as I did the chair/ car transfer without it when we were practising.

Paul the care assistant came to put me to bed and he told me about the arrangements for tomorrow. They are aware of what needs to be done and by when (including breakfast so that I can have my morning meds as some of them, including the insulin, need to be taken with food). A lot to do!  We also chatted and I found out that he belongs to a drama group in Broad Hinton and they have just started reading the play they are doing in the summer.

I think that’s it now. In bed, comfy, and ok about the arrangements for tomorrow. I am going to listen to tonight’s Archers if it’s already on iPlayer.

Goodnight!

A promotional shot of a Cricket!

I'm not as elegant as this!

3rd April - CCH - A bad painful day

Sunday 3rd April

Had a really bad night, as legs and chest very painful. First of all, couldn’t get to sleep so watched tv (Morse) until midnight. Managed to drop off, then woke up again at 2, then again at 3. Just lay there listening to radio. Dotun on BBC 5Live's Up All Night had a phone in on listeners' favourite funny songs, so I heard the delights of the likes of Sophia Loren and Peter Sellers doing “bangers and mash” and several songs from Bernard Cribbins and Jasper Carrot amongst others, so I quite enjoyed that. Finally dropped off about 5 and then awake again in time for early obs at 6. Sugars were back to normal at 7.1.

Dozed until breakfast at 8.30  - today it was All Bran, toast and marmalade. I couldn’t sit myself up properly, so it was a bit awkward.

Went back to sleep. Care assistant came to get me up, but I asked to stay in bed for a bit longer. Next thing I knew it was pre lunch sugars at 12 o’clock. Sugars were 9.5. Stayed in bed and had lunch in bed – roast turkey, roast potatoes and peas, followed by cheese and biscuits. Again, a bit awkward, eating in bed.

After lunch got up and dressed, and toileted. I’m getting the hang of this pooing business!
Taken to be weighed again – thank goodness I’ve lost a little bit of the extra weight I’d put on.

Sat waiting for Sian and Juli, when we all went and sat outside in the sunshine for afternoon visiting. We chatted and talked some more about our Anniversary party before we moved indoors when the sun went in to sit in front of the tv for the Grand Prix. They had brought a picnic, so we ate that, before they decided to leave so that they could get home in time to watch the end of the race, so back to the room for me.

Chat with sister about arrangements for Tuesday. I need to make sure I get given my midday meds to take with me.

Pre supper sugars 19.3, so not as bad as yesterday. I didn’t feel like my soup, so just had ham salad and an apple for supper. Juli reappeared, and we went to get a drink. Day room had man with no legs (still don’t know his name, and we have been exchanging pleasantries for days now!) watching very loud tv so we went into the meeting room to have a view of the garden. Very nice. Talked about Falklands programme Juli has recorded, arrangements for Tuesday (you may have noticed that this is looming large in my consciousness!), then we went back to my room at end of visiting. Shoutey man being VERY loud, but I have discovered which room he is in.

Juli left, I waited a bit before pressing bell to be taken to loo as it was clear staff otherwise engaged! As I was being toileted, I was asked if I was ready for bed. Usually 8 is too early and I leave it unit at least 9, but I was still very tired to decided to call it a day. Now in bed, catching up and watching tv. My friend Sue has just posted about The Archers on Facebook, so I am going to do some iPlayer catch up!

Hope I have a better night tonight!

Goodnight!

2nd April - CCH - A funny shower & a great sunny day

Another reasonable night’s sleep, woken at 6 for early morning obs – sugars 9.2, but I put that down to the things I ate last night that I really shouldn’t have, and still less than 10, so not too bothered. If I know the reason, it‘s not too bad.

Slept/dozed until breakfast – the usual porridge, toast and marmalade. I do actually like the porridge. Sat up in bed after breakfast, watching tv and reading, then Julie the sister came in and asked if I would like a shower! I said, yes please. She said that it would be a bit later as someone was in there at the moment, but that she’d book it next for me.

Came in about half an hour later and asked if I was still wearing. a pad (correct term for my nappy). She asked if I was still wearing the humongous one and then got embarrassed for using a non PC term and slapped her wrist! I agreed that I was, indeed, wearing a humongous pad and she said that as I was no longer “properly” incontinent, I could progress to a smaller pad and pull up disposable pants! Yes!!

We transferred me to the cricket, and I was wheeled down the corridor with a pile of clothes, towels, wash bag etc. Got to the shower, and sat on commode. Then into shower on the shower chair (think commode, complete with hole with lockable wheels). Poor Julie had a hard job – first she had to manoeuvre the shower chair into the shower bit of the room, then turn it on and get the right temperature. Not easy when you have gloves on and you are trying not to get wet, so I tested the temp. Then I shampooed my hair, rinsed it and did all the bits of me I could reach without falling out of the chair. Then Julie did my nether regions from underneath through the hole in the chair (very funny & we were both laughing!) and then wheeled me slightly out of the shower area but still within reach if the shower hose, to do my feet.

Dried off, got dressed partly sitting down and partly standing up in the cricket. Wheeled back to my room, where I finished brushing my hair and doing my teeth. I had missed the mid morning tea round, but the nice care assistant realised and asked if I’d like one. What a silly question!

Sat quietly until lunch. Legs hurting but I still regard it as a good sign. When I go to Oxford, I may ask about upping my nerve pain relief as this is now fairly constant.

Pre lunch sugars  8.4, so that’s good. Lunch was pineapple juice (another one I hadn’t ordered but just arrived!) I shouldn’t have drunk it, but I did. Quiche salad and apple. Apple not as nice as usual – different, softer variety, but the salad was nice.

Blood pressure 106/57. I have a constant runny nose now, so getting through quite a lot of tissues. Went to loo.

Back to chair when and Sian and Julio arrived. Lovely day, so off we went to the Grapevine and outside for a drink. Sat outside in the sun until the start of qualifying, then went in and hogged the big tv. Julio went off to the Esso garage to get a picnic (crisps for all of us and sandwiches for them as they hadn’t had any lunch).  Oh, and more change for the drinks machine. Watched quali, this new system is ridiculous – I don’t know why they didn’t revert to the old system after last time. During this time, Sian decided that Juli and I would have a Ruby Wedding Anniversary party and started the planning. It will give me a date to look forward to and as Sian said "wander around talking to everyone!".

We outstayed the visitor’s visiting times to watch the end of qualifying before they wheeled me back to my room, but it was such a lovely day that everyone did.

Pre supper sugars very high at 21.1, but this was due to the pineapple juice at lunchtime, more grapes and a cappuccino from the machine. I’ll see what they are like later. Supper was lentil soup, liver casserole with sauté potatoes and mashed swede (or carrot, I’m not sure which, but it was nice) then cheese and biscuits. Ate it watching Guy Martin’s Speed doing a hill climb in America. I like Guy Martin.

Supper finished and I rang bell to be taken to loo and have my full to bursting bag emptied, but everyone very busy and it was quite a while before anyone came to see to me (although, to be fair, they had popped their head round the door and let me know and ask if it was urgent).

Eventually went to loo, and am now back in chair waiting to be put to bed. Am having trouble trying to decide what to watch on tv as my Freeview app TV guide seems to be stuck at 7 pm. I may have to resort to I player and  use up some of my data allowance.

So, I think that’s it for today. Talk to you tomorrow.

Goodnight.

A lovely cuppa outside, it should have been a Pimms!

1st April - CHH - A wheelchair mystery!

A good night. Shoutey man still shouting, but I didn’t hear much, thanks to door being shut. Early morning sugars 6.0, nappy checked, went back to sleep until breakfast at 8. All Bran and toast.

Made notes of what I needed to do today – phone calls to make, people to talk to, things to ask Sian and Juli to bring in. I am getting organised!

Was nearly on the BBC Radio 5Live  phone in – there had been an item on Breakfast about a study into sleep in hospital (actually the John Radcliffe) so I texted in to say about shoutey man and confused patients. I was rung back by a researcher who asked if I'd take part in the phone in at 9 o'clock, but I thought it politic not too (plus I didn’t know when I was going to be got up), so I said that I had a physio appointment. Researcher was very nice, said she understood, apologised for disturbing me, and wished me a speedy recovery.

Rang the NMO team and talked to Annaliza about my appointment on 5th. It is at 10:30; I'm seeing the nurse and physio and then the consultant at 11:30. I am looking forward to seeing them, talking about where I am at the moment and what is to come. I am also looking forward to having lunch or something at Pret a Manger (although the ward clerk has said that they will try to get me a packed lunch to take with me). I emailed Juli to let him know and he said he would be here by 8:30 so that we could leave by 8:45. I am already panicking about timing and have asked him to be here by 8:15. I need to confirm with the night staff on Monday as they will need to get me up in time.

Needed to go to loo (feeling coming back!) and was about to ring the bell, when they came to get me up and dressed. Put shoes on and went to loo while bed was made.

We then had the great wheelchair mystery. While I was on the loo, Mati got my wheelchair, and transferred me into it to wash my top half. It was when I had finished that I realised that it was not my chair – this one had little wheels and no hand wheel so I couldn’t push myself. However, it did have a label with my name on it. Mati also realised that it wasn’t mine, so went to search for it in the wheelchair room (lots of wheelchairs, of all shapes and sizes, including ones that are big armchairs on wheels). Couldn’t find mine, but asked Alice the physio, who found one the same as before. This now has my name on it.

Alice then came to collect my ward folder to update it for the appointments for next week. She knew not to give me an appointment for Tuesday, but I asked that if I was having an appointment on Wednesday, could it be in the morning because of Mum and Dad visiting in the afternoon. She said that she would do that as she understood about long distance visitors!

Maintenance man came to mend the big light in my room, which has been playing up for a few days. He changed the tube, but it still didn’t work, so he went away to get some more bits and tools. Came back after a short time and after a bit of fiddling, light was mended. At one point there wasn't three points of contact on the ladder, but he managed very well considering he was on a stepladder in a very confined space.

Another GP did rounds. Not much to say- mentioned slight urine infection, but that was it, really.

Pre lunch sugars 11.3 – this increased insulin seems to be working. Lunch was apple juice (I haven’t been ticking that I want fruit juice because of the sugars, but it arrives on my tray anyway, so I drink it). Ham salad and cheese and biscuits.

Went to loo again. Apart from getting my bowels under control (which is working), it is also has the advantage of giving me some exercise as I have to stand up on the cricket and sit down several times during the process.

One of the patients was unwell and was taken in an ambulance to A&E in Swindon.

Alice brought back the folder. We had a chat about what I could do in terms of exercises, and she said to do the “marching” exercise of raising knees up and down in chair, and doing bed exercises when I can – I need to ask the ward staff for help if necessary. Next week we are going to have a go on the cycle machine. Not sure if I’m looking forward to this or not! She also said that she was aware I needed some more supervised phsyio so although they couldn’t schedule it at the moment, they will come and get me for the odd 10 minutes if they can.

Got back to doing emails and stuff, and watching tv, and then the diabetes nurse came in to review my sugar levels and said we seem to be getting them under control with the increased morning dose. Will review again on Monday.

Then it was supper time. Pre supper sugars 15.6. Blood pressure on first go was 85/56 and Mati got a bit worried, but we did it again a few minutes later and it was 103/65, so we decided to record that one! Supper was soup, followed by ravioli and green beans. A bit of a strange combination, but I had thought that there might not be very much, and that I needed some vegetables. I had been right – there wasn’t a lot of ravioli, but it was nice. Cheese and biscuits for dessert. Supper had been a bit late, and it was nearly visiting time by the time I finished. No immediate urge to go to loo, and I didn’t want to repeat yesterday when I kept J & S waiting, so I didn’t ring bell.

Sian and Juli arrived and unpacked what they had brought for me – crayons to go with my colouring book, rich tea biscuits (I am allowed one with my afternoon tea, but don’t always get one), chocolate buttons (I’ve run out) and grapes. Not sure if I’m allowed grapes (there had been a bit of tutting last time) but I have had a few.

We went down to the drinks machine, but we only had the pound coin that hadn’t worked last night. Sian said it was because it must be a counterfeit one. Went back up to day room, with Sian and Juli fed up with no drink. Sat and chatted, then Sian disappeared and came back with change from one of the staff (and no, she didn’t pass on the dodgy one, she’d got a £2 Coin from my purse). Back down to the machine, and drinks purchased for all. Back to the day room, and more chat.

Half past 7 came very quickly, and they took me back to my room, and left and where I rang the bell to go to the loo. Success again, nappy changed and bag emptied. Then back to sit, watch tv and did some colouring. I am not very good at it. The shapes and pictures are small, and my glasses not good enough so although I tried keeping in the lines, it wasn’t always possible. I am also very limited in the colours I am using in that I want the flowers to be flower coloured and the grass green, but apparently you don’t have to limit yourself to that But should let your imagination take over. Not sure if I’m ready for that, but there are lots of pages, so who knows?!

So, all done. A bitty day – I had had my tv viewing all sorted out – Pie in the Sky, Lovejoy, The Bill, etc and I missed bits of all of them due to all the above happening!

Now just waiting to be put to bed, watching Billy Connelly going across America by train. It’s good.

Talk to you tomorrow.

Goodnight!