So, it’s been a few days (looking at the site, anyway), so a quick update on how I’m doing.
I was definitely feeling better in a number of ways – T says I’ve been more like me this week – but it’s been an uphill struggle. I’ve been starting to feel really lacking in energy, and it’s not because i’m not eating or sleeping (I’m sleeping as much as I have been and have been eating well). The afternoons have started to become more like the mornings which is not great…
Had a visit from Rachel, so I’ve had some bloods done today. Looking at the O2 on my watch, I’m around 90% blood oxygen level a lot of the time (unless I’ve been breathing deeply), and even a short walk is really tiring. I’m shaking some of the time, and definitely finding everything physical more of a struggle – which of course then feeds back in the mental ‘you can’t get up’ type thoughts. Which I’m working hard not to give in to.
My blood pressure is up and heart rate is up, so hopefully there will be something that can be done about it once the results come back. Also, I’ve been getting nosebleeds (which is another possible steroid side effect) but they’re kind of small and internal, so I’ll blow my nose and it’ll be a right mess. It was pretty distressing the other day as it was bad and just kept coming – like it just wouldn’t stop. One of those moments when you think “what the hell is happening to me?” and kind of lose control a bit. T helped calm me down, as ever.
On the upside, have still been doing things and trying to keep mentally active and on top of stuff. Found out that I’d missed a whole load of images out of the rally site, and fixed that (300MB of images, even though they’re all tiny, and I’m thinking why the hell did you make them so small… but there’s nothing to be done about that!!!). Been doing some more stuff with coding with LLMs, which has convinced me that it’s really not ready unless you’re paying a lot for the monthly sub to a top-level model. When you ask it a question about a piece of code it’s just given you and then it decides to use something totally unrelated (a completely different library that appears nowhere else in the code) then I think it’s best to just ask what it would do and pick the bones out of it rather than take what it says as true. Or sometimes it just says “I’ve done this” and hasn’t done it. I can’t find it, but it literally said “I’ve got rid of that” – and put a comment saying that – and then it was still there! Anyone who tells you this techology will become a general artificial intelligence, or that it is sentient is just wrong, but that’s a topic for another long, unreadable diatribe of mine!
We’ve been spending some time outside in the garden – where I’m actually currently writing this – because it’s “holiday weather” warm which is great – we’ve been really lucky with the weather and while they did a terrible job on the patio, it is usable, which has been great. I really can’t move too much and I’m needing to concentrate on breathing more deeply even while doing this (sometimes I ‘lose my breath’ and have to really work at it), otherwise I’ll be really hazy. But it’s in the evenings that my head is as clear as it ever gets so this is really the time to do this as while I’d love to write in the mornings, it’s an uphill struggle. Near vertical some days. But I’m lucky to have this time, and T as ever has been incredible. She looks after me, has made sure I basically want for nothing. There is no way I would be where I am now without her – I know I could not do this on my own. Even doing my lunch (microwave teriyaki chicken) on my own yesterday was a trial. I did it, but was knackered by the end of it and took a couple of minutes to have the energy to actually eat it! (T had an appointment which spanned lunchtime and yesterday was a busy day with a guitar being collected by someone who needed to learn how to use the eBay app, then lunch/meditate/sleep/nurse appointment).
So, hopefully something will turn up that will help with the bloody/oxygen/heart rate/utter exhaustion situation. That would be good as I hope I’m due a tiny bit of good luck in that direction. But I’m thankful for what I have, and don’t forget how lucky I am to have people around who are looking out for me. Mark has been over for a couple of hours today and the ‘workshop’ (big shed) is now free of a lot of the stuff I was ‘going to use one day’. Which I’m not. And not only that, he tidied a load of stuff up and packed it neatly so there’s more space in there. And some of it was useful for him, so that, too is good! So if anyone wants some wood…..well, quite a lot of it…. come and get it! It’s on freecycle but I know people will probably want it delivered or cut to size….
But help like this is really incredible and just what’s needed at the moment.
Thanks for reading.
