Woke up at 6 when the ward lights went on. Sugars 5.7. Laid in bed and I was got up at quarter to 7, washed, dressed and sat in chair, then I had breakfast made just for me. When I was asked what I wanted and said Bran Flakes and toast and tea. I got a lovely breakfast, and my bowl of bran had both Bran Flakes and All Bran! Went to loo after breakfast, and then got all my stuff ready to put in the bag that Juli is bringing in.
The lovely staff have brought me my meds and insulin, and my lunchtime meds in a tube to take with me. Also my evening insulin in case we are delayed. I was also given my meds folder and notes, and a packed lunch (which wasn’t very diabetic friendly, but very welcome).
Juli arrived, but had forgotten the bag, so I was given a patient’s property carrier bag to put the surprising amount of stuff in. As we were making our way out to the car, we met Alice who had realised that she hadn’t given me the step yesterday, and so had come in early to give it to us. We got out to the car park, and got me into the car with no problems and left on time to the minute!
Off we went. It was wonderful being in the car. Traffic was ok, and we arrived in Swindon, where Juli decided that we’d call in at the retail centre and buy a bag. I said a jute or cotton carrier bag would be fine. Dunelm and Hobbycraft not open (before 9am), but Poundstretcher was. I ended up with a flight bag. Put everything in it, and started off along the A420 towards Oxford. We arrived in good time (plan was to use the contingency time for a coffee) but there was a queue for the car park. I didn’t panic! Got in car park next to a disabled space which meant that we had space for the wheelchair transfer.
In to Pret A Manger for a tea and a croissant. Wonderful, fresh, flakey croissant (I had a plain one, Juli had a plain one and a Danish as he hadn’t had breakfast).
Up in the familiar lifts to the 3rd floor, and into the waiting area. Collected by Sandra, and in to the appointment with her, Rosie and Nina the physio. It was lovely to see them all again (well, hadn’t actually seen Nina before as I had been asleep when she’d come to see me when I was an in patient). Had a catch up, I was given ample opportunity to ask all the questions I had (numbered 1-9 in my notebook and covering everything from bowels to pins and needles to blue badge). All my questions were answered fully, and I was given a whole load of leaflets and info. Nina had a look at my feet and ankles and what I could do. We talked about the amount of physio and my expected discharge date. Information about the annual NMO day in Birmingham later in the year. Lots of smiles, laughs and encouragement. A very positive session – I felt good – thanks, NMO team!
Then back to the waiting area for a while before going in to see Dr Leite, Dr Palace and her team. More testing (and another hammer – I have missed that!), including my eyes. I do need to go to the optician when I get home- there are some issues with my eyes, but they are not NMO related but just the fact that I need to go for my regular check up and glasses change. I will be having the meds for the nerve endings increased as the feeling comes back and the pins and needles, burning sensation and tightness increase. Again, a lot of positivity and due to go back in 4 months. Notes will be sent to everyone relevant.
Needed to have bloods taken for the antibodies and the research programme, so back to a different waiting area. This is where it got a bit negative- went in and the nursing assistant couldn’t get any blood from me – tried my elbow and the back of my hand, but nothing. She called in her colleague, who then also tried, but failed. Even tried the trick of filling a glove with hot water and putting it on the site. Eventually, after over half an hour of trying and 6 different attempts in various sites, she got just enough for the samples using a paediatric needle, which worked but took a long time as it was so small. Didn’t feel too brilliant after this, so we went downstairs for another cup of tea in Pret. Decided not to have lunch there as it was quite busy and Juli had promised me a McDonald”s. As mentioned before, the diabetic nurse had said to go to the pub, but the chair would be in bits in the boot, and we didn’t know any pubs that were wheelchair friendly en-route home , so McDs it would be.
Got back into the car, with the wheelchair dismantled and stowed and off we went. A little way down the road, Juli had a “did I put all the chair bits in the car?” moment, so we stopped and he checked. Yes – folded chair, two foot rests, two arms, one cushion and one step. Set off again. Phone calls to office, engineers and Sian during run. Sun shining, beautiful day, daffodils at side of road in lots of places, oil seed rape beginning to flower (so not overpowering as it can be). Following a Maserati. Arrived at McD’s and I had to look at the pictures to see what I wanted. Was really naughty and opted for a Big Tasty – but was good and had a Sprite Zero as the drink. Juli had a quarter pounder with cheese. We sat in the car park and ate, listening to the radio. Juli checked whether we’d won anything in the monopoly game on line, but we hadn’t. But among our instant wins were porridge and a fruit bag, so I can be sort of virtuous next time I escape!
Back on the road – decided to come through Bassett rather than the motorway so that I could see what, if anything had changed (not a lot, but the daffodils in the verges on the way into the High Street were lovely, and I was taken for a drive along the new temporary road between the two railway bridges. It doesn’t look very temporary to me!).
Got back to the hospital via Lyneham and Calne at just after 4. We arrived during visiting hours, but had to ring the bell to be let in as one of the new patients is a serious wanderer (even worse than M) and it seems the staff have had a difficult day. Gave Alice the step back, thanked her for coming in early and told her what had happened.
Juli left to go back to sort some problem out at the office, and I unpacked the stuff we had taken and started reading all the info. Did the questionnaire about the appointment (had intended doing it in Pret earlier, but my pen had run out).
Pre supper sugars were 20.8, so no worse than not having a McD’s! Supper was a tuna mayo salad and cheese and biscuits. I couldn’t eat it all (still very full). Had my insulin and meds. Sat in chair carrying on reading all the info. Some is going to be very useful. I was halfway through the leaflet about bowel control when Juli and Sian arrived. I didn’t want a drink, neither did Sian, and Juli abandoned the idea as he could’t face having to wait for the door to be unlocked to go out and back in again.
Went and sat in meeting room again as tv still very loud in day room. Talked about the problems in the office and a bit more about the anniversary party. Sian said that she’d had an email from Moonrakers Mini Club saying fine to come in non-classic mini, so we are booked in. All I can say is that I’d better be home and getting in the car by the 24th! As I said before, something to aim for.
Came back to room at end of visiting and gave Sian the questionnaire to post. They left in a mass of visitors all leaving at be same time (no queuing to have door unlocked). Waited for a bit, did a bit more info reading (I said we’d collected a lot, and I haven’t even started going on the the websites listed in all of it yet!). I need to start another list of questions (mostly for the OT, I think).
Rang bell to go to loo. Not good timing, as it was handover and coming up to drugs round, but no problem. Toileted (success and it all tied in with what I had read in the bowel booklet, so that was reassuring!). Asked if I wanted to go to bed yet (it was 8pm), usually too early but again I realised I was very tired and that it was likely to get very busy for some time, so it might be quite late before being put “away”.
So, spent some time getting organised (this involves my ocd arranging my table and the cables for the iPad and phone which are different lengths, I keep the phone nearest me overnight as I use it to check the time). Watched the Bake Off crème – glad the army blokes won this heat over the pastry chefs from the Savoy, but still think this is an excessive amount of perfection required for pastries! Now watching the Obama programme. Soon I will watch a bit of the news then catch up with the Archers. Don’t think I need any chocolate buttons tonight as I am still very very full!
So, I have had a really good day. I have a lot of things to look forward to, a lot of info to look up, and an NMO day in Birmingham later in the year. Before then, I need to get the balance and walking stuff sorted.
Goodnight!
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