Not ME Awareness Day

I was planning to blog on Sunday, which was ME Awareness Day, but instead because I have ME I slept through it instead. To be honest I’m not entirely sure I would have said anyway – I’ve already said what it’s like to live with Severe ME, and that we need more physiological research. The recent NICE guidelines are a massive improvement over the old ones, but now we need doctors and hospitals to actually listen to them.

I guess I might as well do my update post instead 🙂

First thing: the charity which provides my adaptive controllers, SpecialEffect, was given a BAFTA Special Award. They thoroughly deserve it, having helped so many physically disabled people be able to access games, amongst other things. BAFTA asked the games journalist Laura Kate Dale to write an article about SpecialEffect and what they do, and alongside some amazingly awesome people I was quoted in it. Still can’t quite believe that happened 🙂

Below is mostly a rant, so feel free to skip it if you like. It’s mostly for my future reference. The Too Long; Didn’t Read version is that respite didn’t go well, lots of things happened, and though I’m struggling, I’m making progress on some of my goals.

Last post I mentioned I was going into respite, but didn’t know where. Eventually Izzy contacted Social Services and they found somewhere that would take me. The downside was it was 10 miles away. Izzy booked stretcher patient transport there, which apparently we could always do since I needed it? No-one told us that before. It meant I got there though, and it meant I wasn’t as ill as I could have been on arrival.

The stay in the care home did not go well, though there were a few good days when the right staff were on. The morning Izzy flew to America (I’m now allowed to say she went to the Game Developers’ Conference in San Francisco) she had to phone them at 5am to get them to help me, as I’d not seen anyone for 7 hours. They agreed to hourly checks, and even without them everyone on that floor is meant to be checked on at least every 2 hours, which didn’t happen many nights and some days. Multiple unnecessary bedding changes were needed during the stay, because I didn’t get pad changes when I needed them. And to top it off, I ended up with my first bed sore in nearly a decade, due to having a heavy plate on me I couldn’t move for several hours multiple times, and no alternating air mattress. And not giving me my prescribed painkillers when needed. I was running on adrenaline the entire time, and am still having nightmares about it.

The one big positive of the stay was it was near where Sammie lives, so I got to see her twice (would have been more if she’d not had a cold at the beginning and I was doing better). Those visits helped so much. Izzy also came between the two trips, both to try and improve my care (didn’t work) and to just spend time with me. I’ve got a photo of all three of us together which makes me happy every time I see it 🙂 I also heard the owls at night, which was pretty cool.

Coming home was interesting. Izzy forgot to book the stretcher transport until a few days before I was meant to go home (while she was still in Belgium), and by that point they couldn’t do it. Then she couldn’t get a wheelchair accessible taxi booked either. This meant the only option was public transport. The first 20 minutes or so in my wheelchair I was mostly fighting to remain conscious, but eventually adrenaline kicked in enough I was aware of things and made a request: to go on a train (Metro). This technically added 6 minutes to the journey and an extra change, but reduced how far Izzy had to push me (especially uphill) and meant I got to be on a train going over a bridge, and was able to look at other bridges! That part was worth it, even if I’ve still not recovered completely.

Since getting home it’s been mixed. I crashed, as expected. The home care agency put me on a doubles round without letting us know, and having two extra people in the flat was just too much for me. We also weren’t told who was coming, and they were arriving outside the times agreed with the agency (11am-12pm in the morning, 6pm-7pm in the evening – technically my calls are at half past but with 30 minutes leeway either side). It got to the point I was panicking just thinking about it, so Izzy agreed to cancel them for a week, and also told them when they came back to only have one care worker come in.

Then I had my B12 injection, and there were two nurses for that. And because Izzy was working I had to answer all their questions by myself. Necessary (it’s started to kick in now and I can actually be awake for a few hours a day, like now) but not great in a crash. I was due to get it while in the care home, and they said they’d sort it out, but obviously they didn’t.

Then the nurses insisted I needed my mattress replacing, which was true as a pipe was broken (though the foam below is also pressure relieving, so it wasn’t an emergency). They wanted to do it the same or next day as my injection, but since there was no way I was going to be well enough we managed to postpone it until the next week, which I’m very grateful for. It meant a night in the living room and being in there with Izzy while she worked for a day. Was lovely to spend time with her, but one of her work machines is way too loud for me to be in there while it’s on. I’m glad I have a working mattress again, but I wish there was a medium pressure setting as high is a bit too high, but low is a bit too low. It’s better than none though, and it does mean I’m sleeping a bit better.

Since then I’ve been mostly trying to recover from everything, and get used to the new care workers. Having only one in definitely helps, though I don’t trust them yet. I’ve been feeling really guilty because I know how lucky I am to be getting care at all, and I feel I should be coping better. Izzy tells me I’m a silly sausage. Most of the time I like being autistic, but I do wish I were more able to cope with change and anxiety. It’s exhausting.

Izzy’s trips both went well. She really enjoyed the work event, though failed to get me any peppermint Lifesavers (not helped by having a headache the one day she had free to explore). I helped by tracking her planes and telling her where she needed to go at each airport, especially for the really tight connections. Her cruise was apparently fantastic, and she met friends and went to the zoo and saw penguins, amongst other things. I unfortunately was too ill for a video call while she was at the zoo, but the photos and videos were great. She did a bit better on presents, getting me a soft toy penguin and stroopwaffels.

Apart from the first couple of weeks where I mostly slept, I’ve been well enough for some entertainment. I’m slowly getting back into watching my favourite Twitch streams, when the games are ones that I can deal with. I’m now up to 10 books read, so I should probably think about upping my goal there. I’ve completed three video games so far (A Little To The Left, Frog Detective: The Entire Mystery and Unpacking) so I’m really happy with that. I watched Mary Poppins Returns and Miss Peregrine’s Home for Peculiar Children while in the care home, so I’m doing well on that front too. I’ve also watched the first two episodes of Good Omens, though for some reason TV shows are still really difficult to follow. I’ll figure that out at some point, when my brain is doing better. I’m really happy I’ve been able to do as much as I have, especially since I’m still not able to move as much as I’d like.

I know I will get there eventually. I’m hoping my home care situation will improve (I’ve been offered the chance to move companies, which I’m unsure about right now but if things don’t improve with this one soon will take up). Being at home is much better than not. Izzy’s being incredibly supportive and understanding, and helping me when I’ve had nightmares, anxiety and panic attacks. I’m still able to do things and I’m even on my computer to write this, which is so much easier than on my tablet. It’ll be okay 🙂