It’s been quite the roller coaster over the last few days. In some ways, I feel up, and then….I really don’t.
One thing that has definitely been working better is moving much more towards smaller, more often meals and also changing order about, so I effectively eat breakfast across the entire morning, with porridge as one thing (and T has now basically taken the world crown for the best porridge ever. To call it that is almost an insult. It is sublime to eat, it really is. Oats cooked to perfection, with cream and milk, and blueberried (thanks Will). An absolute joy, and being refined slightly each day – even though I now don’t think I need it. Bran flakes (by way of contrast), and then something cooked at one point – at the moment bacon, eggs and cheese (small amounts) in a sandwich. Which by the end of the morning means I’ve had a fair few calories and what I need. And then a small lunch to go to sleep after. Afternoons are getting better as a result.
But I’m still losing energy. I have to work hard at everything. Make sure I’m working my legs properly and trying to make sure I’m not going backwards physically. Which I think I’m just about pulling off, but it’s difficult to measure, particularly because confidence is part of it and it’s difficult sometimes to separate reality from perception. My heart rate is still up, but my O2 levels seem to be a bit more stable, but I’m still having times when I ‘lose my breath’ and have to concentrate on breathing for a few minutes and compose myself.
But that’s the backdrop for the last few days.
On Friday we went to see Eddie’s end-of-school (quite literally in his case as he’s now left school!) show. And we decided to take the wheelchair as I wasn’t 100% about being able to get in and out unaided and I definitely wanted to be as low-key as possible. And I achieved that….. and so much more (to misquote Marti di Bergi).
First up, have to say how immensely proud I was to see Eddie on stage. Everything about his performances compared to last year was better – his dancing was really good, and I think he should have been present in more ensemble numbers as he fitted in perfectly when he was on stage (which there wasn’t, to me, enough of). But at the end of the show, he had a big part, and he filled it. Lit up the stage, and kept acting in the background while other stuff was going on (not everyone did this). He’s just great in those kind of roles. So you can’t say “star of the show” or something like that, but his part was right at the end and the kind of thing you’d remember because it was good, well done and at the end of the show.
But the low-key bit. Definitely managed that. Here are my wheelchair experiences from just one night in a chair in public.
Firstly, I was really surprised how people just didn’t think about you when you’re in a chair. Some don’t even see you. The staff at Lighthouse, yes, and one person did so (pressing the ‘open door’ button for a fire door to get to the lifts), but standing right in the middle of a corridor, blocking the way (when there was no-one else around) and then looking a bit surprised and disgruntled when I asked if I could get by was pretty bad. And that kind of thing happened multiple times. You’re just ….. not there if you’re in a chair. I was gobsmacked, to be honest.
The lifts at the Lighthouse are quite small, and while you could get 8 people in, once I was in in the chair and T was behind me, there wasn’t much room. We were coming down from floor 2 (to go to the ground), and it stopped on 1. And the people queuing said they’d like to get in but we said ‘there’s not much room, it’s our first time in the chair, it’ll be back in 30 seconds’ and they were not happy about this and said we could move over (which just isn’t possible), and there was a ‘massive queue’ for the other lift. I mean, just 30 seconds people, come on….
Fortunately T was happy and confident pushing me about – I was pretty tired at this point and couldn’t have walked far if I’d needed to – and we got back to the car OK, but it was a real eye-opener that a number of things happened in a first night using the chair that I’d just not anticipated. The infrastructure for wheelchairs may be in the building… but the firmware doesn’t seem to have reached every element of society. And just for the record, I’m not saying it was posh people who were nice. It was all sorts of people who were and weren’t. The person who pressed the door button for me didn’t look like they would do, so lesson learned for me – book/cover!
Today, I managed to overheat overnight in bed, and have been playing ‘catch up’ all day. For the first time I felt sick before eating so I’ve been being careful, and it’s only now as I write this (6pm) that I feel like I’m where I normally would be (there or thereabouts) at this time of day – had to take it very carefully as I didn’t want to be sick and then really feel like I’d taken a step backwards. T has once again been her amazing, supportive self, and looked after me all day. We’ve had a nice quiet day, and it’s really difficult to express (without sounding like a rude, arrogant, self-centred arse) that sometimes what I need is just to lie on the sofa with T, watch TV and just spend time together, quietly. And we’ve got a couple of days of doing that, which is definitely what I need, as I think I’m entering another phase – my energy is getting lower, and I have known for some time that is what will happen – less energy and sleeping more. But I’ve got an appointment on Thursday so hopefully some adjustments can be made and can help with the breathing, etc.
I’m still here. I’m still working at it. And I’m still me. As much as I can be.
Thanks for reading. It really does mean a lot.
