Looking at the dates on the posts, it’s time for an update. And a lot has happened, some good and some bad. It’s definitely been eventful.
So last update was pretty bleak. Mornings are still bad – I’m just wiped out mentally and physically – but we’ve just decided to accept that and see how it goes each day. Yesterday morning was actually better than I can remember for a long time in some ways.
But it’s really becoming another mental game again. Each time I go to get up, part of me is thinking ‘you can’t do it’. But I can…but there’s this feeling that I’m not going to be able to each time.
Had a really tough time getting back in the shower again. And again, it’s all mental. We’ve got a good routine over the last couple of days (and are doing it in the morning because it’s hard anyway so it’s better to just get it out of the way, rather than have it hanging there and then use some ‘good time’ up on it). But it needs to be done daily and again, it’s another mental game to be played. This is hard.
I’ve said it before and I’ll say it again – I can totally see how people just get locked in and give up. The changes in your body are horrible and being confronted with them is not good.
Talking of which, T was reading last night about the new Covid variant – stratus – which gives people a hoarse voice… I know I didn’t test, but it’s another piece of info… Problem is because of the steroids, it’s probably not coming back, so I’m just going to sound like this now.
But we’ve had some nice afternoons, and been constructive. The new LED project (which obviously I wouldn’t start now, but I kicked off way before all the GI and so on) is moving forward. T has been doing the drilling of the boards for the LED panels to go on – we made a template and a work base up (well, T did for the most part!) and then day by day got them done. There were…er…. 300 holes to drill in the right place (each LED panel has 3 sets of cable coming out the back and they need to go through to let it sit flat). And she’s done all of them, pretty much. And I think she enjoys it. Certainly it’s been great to see her doing it, and I was holding things up ‘cos I was too busy watching her work!
Next up will be making the frame and a bit more woodworking, which we got into watching videos of and it’s great to see it moving forwards – even small steps forward means forward movement. Like everything that’s happening now. And it’s funny, because before I got up, I was thinking “yes, this bit can be done today”. And now the morning behindness and so on has kicked in, it seems impossible.
Yesterday afternoon was a big day for me. We all met up with Tom, Amber and Bea at Poole Park and took the wheelchair with us. The idea was nice flat, easy walk, with the option to use the chair as support if needed and then possibly be pushed back. Plenty of safety margin, but again a load of challenges to overcome. Once we found them in the park, we went for a lap round the cricket ground. And I made it all the way round without needing any support. Which surprised me, as the messages I get (physically and mentally) are just difficult to read. I don’t know if I can keep going, but I concentrated on keeping my breathing good (and was talking as we went which is actually good for taking my mind off it), and this seemed to work OK, so after a lap we got set up in the shade with Eddie, Bel and Jack and they had fun looking after Bea. Sitting in the chair was good as it’s comfortable and quite relaxing once I got over myself. Brakes on, and it’s fine. Plus easy to move on my own, but I didn’t need to self-propel. Will probably need to do it at some point to ensure that I can do it, but that was a task for another day.
Had a really good time out, which was nice as I was dreading doing it beforehand. Yes, in tears before I went. But the afternoon routine, (lunch, mediation, sleep, coffee) leads generally to things being OK, and certainly way better than the mornings. I’m typing this before breakfast, but once I’ve been up for 5-10 minutes I’ll get a bit shaky which is usual now, and just part of what mornings are like. Saw Fraser who was there with his family which was nice and he said a quick hello.
Sleep is still being elusive. Oddly one of the meds I’m on works better for sleep if you take less, so we’ve been doing half-doses and that has improved things, but sleep is still a bit of a sticking point. Every morning my phone tells me I’ve hit the target, but I know I’ve woken up at 1, 2, 4 and 6 beforehand. But on this dose, as the night progresses, it seems easier to get back to sleep which is some benefit, and much better than I was doing beforehand.
We’ve also been working on mobility, using the foam roller, as I’ve been getting stiff, and again I think this helped being able to walk yesterday. As anyone who’s known me for a long time knows, I’ve had lots of back issues – my life has been peppered with painful episodes – and loosening things up has helped a lot with moving around, so this is another thing we’re putting into the mornings as it seems to pay off later.
The biggest issue though is that while I’ve not had any more things thrown at me just yet… T has. Tennis Elbow which is incredibly painful and I know it’s making day-to-day stuff difficult for her to do. Not sure where it came from, but she’s working on it, icing and resting it, but I can see how painful it is, and she’s still keeping going like the amazing person that she is. I just hope the icing can take the pain away quickly from her – like any more difficulty was needed for anyone in this and she’s directly hit by something that I know is really painful (having had a minor case of it years and years ago).
I’m still pushing. I’m trying not to become a lock in.
And T is just incredible. Every day. Her resolve and resources are immense, even when yet another hurdle comes along.
