It feels like time warp time has been back in action – I think my last post was maybe 3 days ago, but it seems like ages, but I’ve checked the dates and it was.
I’m still learning how the 17 unmarked controls on the ship work. Had some big ups and downs, but most of what’s happened has been positive, but it’s been hard work. On all fronts.
We’ve been out in the camper for lunch (which was another thing that had become blocked off in the ‘never going to do that again’ mindset that befell me last week and I’m still working on breaking). Not a big road trip, just to Canford SANG (which you probably know about if you’re local, but it’s a nice place to go for a walk even if you don’t have a dog / s*** machine to accompany you), as it’s an engineered bit of riverside park with pretty good gravel tracks and a nice choice of routes. Had lunch – as ever T prepared something that was just right to cook in the camper which was nice and tasty but not too much to handle. Then I tried to sleep up top in the camper. But 3 dexamethasone a day is really taking its toll on sleeping for me. I lie down, relax, go through a routine that I know works…. and it doesn’t. The only way I can describe it is like there’s a part of my brain which is in control of the sleep routine, and it no longer allows it. This isn’t a case of lying awake running through stuff in my head, being kept awake by thoughts. It’s like a broken shutdown routine on an old computer, and I never get to the ‘It’s now safe to shut down your computer’ page.
Sleep is really, really important. And I’ve really not been getting enough of it, and not for the want of trying. So naturally this has the knock on effect of making everything else difficult (and often full of tears and a bit of distress on my part). One day (genuinely can’t remember if it was yesterday or the day before) I got up at 5, having entered the loop of trying to get to sleep and what feels like 15 minutes between seeing what time it is turns out to be 2 or 3 minutes each time. I wanted to write a post and get some thoughts down… but as soon as I opened up the mac, everything evaporated and I was just absolutely exhausted. But couldn’t sleep. So I just drowse-watched stuff on the TV in the back lounge for a couple of hours – there simply wasn’t anything else to do. And then everything was just plain effort because I’m exhausted. So now I realise it was the day before yesterday – just had to be.
I’m still varying the controls in terms of food and energy intake and how to do it. Definitely little and often seems to be working better as I get ‘dips’ of energy between doing things. A big theme has been making sure I don’t deteriorate more in terms of physical muscle (inevitable because of the steroids, but if you do nothing it will be much worse and really damage mobility), so moving around more deliberately, making sure I go up and down stairs if I need something from up there. I mean, even just getting up off the sofa is something which for a couple of days last week I had started to get a bit of a block around. So, still working on that. Each day I can feel like I’ve been doing some exercise in terms of muscles, and that’s good. This is like having to a marathon workout session but the work is mere normality. But I think that’s paying off. I certainly hope so.
Now, I need to put this out there as it’s something that I think will be a bit of an eyebrow-raiser to some, and that’s one of those things where I’d prefer a first reaction to be not to my face.
I have a wheelchair here.
This sounds like the end. But it isn’t. There are good logistical reasons to have one in terms of getting one at the right time. I don’t need it now. I’m not planning on needing it soon. But I might do. And if you only start the process to get one when you need it, you’ll not have it when you do. So, I’ve been issued with one to try out and get used to, plus to actually have it. I’m not sure how long we’ll have this one for, but all the more reason to check it out early.
We went to Tower Park’s back car park and got it out to run in the three modes it may be useful for. One is as a walking support for me – using the handles like a walking frame for support. That was fine – as you’d expect – I don’t need it at the moment, but I’d already been for a 10 minute walk at the SANG (more than I’d walked since hospital), so it was possible I would need the support. But as is my want, went further than originally planned with it, which was good. Goals.
Next, sitting in it and self-propelling – mode 2. This is where we learned a bunch of stuff. Obviously I’ve not used one before and you think it’ll just be kiddy play. But actually going straight was more challenging than expected. I’m definitely not David Weir.
But it threw up a number of things – some about the specific wheelchair (which fortunately is quite modern-looking and lightweight – it looks like it came from Decathlon, not A-plan mobility) and some general. I definitely noticed the arm and back muscle usage the next day… And I can’t steer properly… and you need gloves. The wheel ‘rails’ are right next to the tyres on this chair, so gripping was a bit of a challenge. Being able to brake is important. The chair has great brakes, but it’s like an on-off lever for each wheel which locks in place and absolutely won’t move if that’s on. So you need to brake with your hands/arms which is not easy without gloves (or skill).
Third mode, T pushing me. Which was much quicker and straighter than me.
Putting the chair in the van…. we noticed there’s a seat belt of sorts on it. And the left one… was wrapped round the wheel axle, making it drag and pull to the left! Maybe I wasn’t as bad as I thought (I’d put it down to lack of skill and the camber of the road we were on).
And that’s one of the reasons you test stuff before you need it. Finding all that out (plus a bunch of other things about it) all happened when it wasn’t critical to do so. Doing so when you need it would have been a problem.
Mobility equipment is crazily expensive, for the most part. I had a look at suppliers, and some manual chairs which don’t look much different to these are over £3500! That is price gouging, no question. This one is much better at around £350. So if I do need to buy one, I can do so, and TBH I may do so and make modifications to it to make it better. The grips that T would use, for instance are awful. They’re a plastic which somehow manages to be hard and slightly painful to grip, but slippy. A set of £5 BMX grips would be much better. Spacing the wheel rails out from the wheels would be the way to go. They do one with ‘all terrain’ tyres, so you can go on slightly rougher tracks, which would probably be the starting point. But anyway, just wanted to get that out there.
This morning I’ve slept better (we dropped to 2 dexa as it was just too much and the last day of 3 anyway yesterday) and I managed to get a 40 minute nap at lunchtime, so I think (without an accurate clinical trial) that it had been making a big difference. And getting a nap was an absolute joy – I felt night-and-day different, and the morning had not gone well in terms of food (I actually forgot to take a creon with a small bowl of cereal, which I’ve not done before), but pulled it around with T’s immense support during proper breakfast. She is just amazing. Again, I’ll be honest, I cried throughout breakfast. It was just too much for whatever was going on inside. But got through it being held and supported, and the day looked up from there. Ended well, which was incredible given the start of it where I couldn’t face anything and thought I was just going downhill again.
I’m still pushing.
Thanks for reading.
