(I had hoped to post this at the time, but my ME decided that wasn’t allowed. I’m only about 4 months late )

The cool thing I did in the last post? I filmed an intro for a game for the Access-Ability Summer Showcase 2025. I’m really happy I was able to do so, after being invited to last year but not being well enough.

The Access-Ability Summer Showcase (AASS from now on, both to make it easier to type and because I find it funny) is a yearly streamed event by LauraKBuzz that highlights video games with cool accessibility features to make it easier or possible for more disabled gamers to play.

Afterwards the videos are all available on YouTube, in case you missed it, want to go back to them, or weren’t told it existed until four months later. There’s the usual subtitled version, and it’s also available with British Sign Language, American Sign Language, and audio description for blind viewers. I’ve linked the subtitled version above, but below is linked a post with links to all versions, and each trailer individually.

Every Access-Ability Summer Showcase 2025 Video

What ended up being less than a minute of video took multiple days of preparation and hours of trying to get it to sound and look okay enough in a room definitely not designed for filming. I don’t think my bed had been as empty of stuff (except penguins) since I first got it. It was definitely worth it though, despite the long payback. Did I surround myself with more penguins and put that in my script just to make sure the word penguin was signed in both BSL and ASL? Yes, yes I did. I have no regrets there If you just want to see my intro, it’s at 34:07 in the above video, or before the Rollick N’ Roll trailer. If you like video games though, I do recommend looking at all of them because there’s some awesome ones in there I tried the demo for Rollick N’ Roll and it’s a lot of fun, though I suck at it as I keep forgetting pause exists. There’s only so much accessible options can help with a memory like mine

Other than that, I’m doing okay. Annoyingly typing is causing more payback than most other activities, and it doesn’t seem to matter whether it’s on my computer or tablet, which is why this took me four months to finish. Hopefully update post soon

Things have happened since my last post, and though I have several drafts from the past year, I’ve not been able to finish them. So list it is. They’re mostly in chronological order. I’m hoping to expand on some of them later with photos, but trying to do those posts is partially why it’s been over a year since the last one. This blog is mostly for my future reference anyway

As I’m not expecting anyone to read all this, the TL:DR version is a lot of things happened, but no longer having care workers in has led to an improvement in health so I’m no longer completely bed bound, just mostly. I’m happy! Izzy and Sammie are doing well! There are penguins!

• I managed to get on the ramp for my birthday (18th June)! That was the only outing I managed in 2024 other than the care home stay and hospital visits, so I’m really glad I managed it. My birthday was lovely, and I got a helium penguin balloon that took about 6 months to stop standing up.
• In July Sammie graduated with a foundation degree. I’m so incredibly proud of her, and watched her graduation ceremony at home, as though I really wanted to go I wasn’t well enough to even push through. Izzy did though, and took her out for food afterwards. (Her grandparents were also at the ceremony.)
• I met my brother’s partner. He’s awesome! I’m very happy for them both, and they’ve since moved closer to where I am. My body was not so happy about the visit, and I crashed hard. Worth it though.
• Izzy got a little blue fairy penguin tattoo on her arm. It’s my favourite type of (real life) penguin, so it reminds her of me. Little Dude is so adorable, and it’s hard to contain my emotions when I see him.
• The home care situation got worse. Izzy was having to micromanage the care workers while also trying to work, and I was panicking and having nightmares because I had no idea who was coming or when. At the end of October, Izzy cancelled them, and I started sleeping better again.
• Izzy got me a 4K TV in a sale as an early Christmas present. It’s big, and meant I can now actually make out what was happening on Twitch and YouTube. Penguins look amazing on it
• In November, I found a new lump in my left breast, resulting in an urgent appointment at the breast clinic. Luckily it’s not cancer (it’s a fibroadenoma, which is a type of benign tumour). The appointment went as well as it could, and they even agreed to do the follow up by phone so I didn’t have to go back unnecessarily. At least one part of the NHS still works.
• I crashed hard after, so Christmas was very quiet. I still have presents to sort out when I can get my brain working. Izzy made her roast potatoes with Christmas dinner though so it was amazing.
• Somehow Sammie is 21 now?! Time makes no sense. She’s amazing though, and I’m so proud of her.
• I sent Izzy and Sammie to see a pantomime. They loved it. I watched the CBeebies one which was fun.
• As of this year, I’ve started being able to watch some films and TV shows in bed. Watched Wicked with Izzy (one of her current obsessions) and it was amazing. Improvement is good!
• Got a cleaning company in for a declutter and big clean. They also helped organise removing all the stuff, which was a big stumbling block for Izzy. It helped a lot, even if I could only manage about an hour in my room over two days.
• In February we were meant to have a new care agency come out to assess us, but they ghosted us. We heard from a neighbour who used to work for them that it’s probably for the best. We’ve not heard anything from social services about it since, but Izzy is coping okay for now.
• Izzy was meant to go to Belgium on holiday in March, but she couldn’t find a care home who could take me so she had to cancel. This obviously really sucked, but it did mean I didn’t relapse again.
• She had also booked tickets to go see Starlight Express in London the night before getting the Eurostar. She was really upset about missing it as she’s currently really into musicals and she loves trains!
• I worked out that if we prepared well enough, she went down that afternoon and came back on the first train the next morning, I could probably manage one night, as my hands had improved enough that I could manage my own tablets in a pill box. So we tried it.
• It went okay! The hardest part was taking nearly two hours to do a pad change in the middle of the night (usually takes about 5 minutes with help) as I had to rest between each movement and my hands still don’t work great, but we now know I can do it as a one off at my current level of health. This wouldn’t have been doable a year ago.
• I slept through most of the next two weeks. I also needed to get Izzy up nearly every night, which also confirmed I do still need nighttime care. Luckily we had prepared for this, as we’re now well aware of what happens if I overdo it. At least it was for a good thing, and me staying home helped it be less bad.
• By the 3rd of May I’d recovered enough for Izzy to try a day trip. She went to The Deep in Hull as she was stressed (mostly with work) and thought penguins would help. They did! I was asleep most of the day, which was ideal as I didn’t need anything. This also meant no payback! We’re planning more day trips for her when we can.
• Throughout the last few months, outside of crashes/payback, I’d been working on improving my sensory exposure and being more upright in bed. It’s been working. The hardest part is trying not to do too much at once.
• I’ve also been more able to go on my computer, and set things up so I can stream games from my computer to either my TV or my tablet, so I can play them without needing Izzy’s help to get things set up. The lightened controller SpecialEffect lent me has also been key to this. Yay independence!
• By the 10th of May I felt confident enough to try being hoisted in my wheelchair. And it was fine, so I ended up going out, and to Tesco for the first time in years. It was amazing seeing how much has changed, what’s popular now, and penguin spotting. Prices have definitely gone up.
• I also got the bus back up the hill as Izzy is very out of practice and she’d still needed to get me up the ramp. Apart from my wheelchair not fitting on the first bus we tried, it went well! Apparently my motion sickness has also improved. I still felt fine when I was put back into bed which was also a good sign.
• Later that week I’d had basically no payback other than my neck going into spasm as I’d held my head up by myself too much, so I went into the living room to keep Izzy company while working. It’s so nice just to be in a different room.
• On the 18th I did something big that was technically overdoing it cognitively and physically, but I’m pretty sure it’ll be worth it. More on that in a future post.
• Izzy and Sammie went to see Grace Petrie! They loved it! I got awesome photos of them, and bridges!
• Since then I’ve been mostly recovering from big thing, my best hours have been in the middle of the night, and I’m in the few weeks before my B12 injection where my fatigue is much worse, so I’ve stayed in bed. I’ve still been able to more for myself than last year, and if Izzy didn’t have to be asleep at 3am for work I’d probably be okay to at least go in the living room. Silly sleeping patterns!
• Being able to have Izzy in here more often, and occasionally even cuddles, has made a massive difference to my mood. She’s amazing and I love her
• Another thing that has helped my improvement has been the Visible app and armband. I’ve had to tweak stuff to make it work better for me (compared to a healthy person, even on my best day symptoms like fatigue and muscle pain are severe) but that and the heart rate tracking have really helped me with my very modified version of pacing. I wish it were more affordable for those who need it.
• The last thing is we’ve bought a 3D printer. I was planning on getting it this weekend but Izzy talked me into getting it last night (Thursday 6th June). We’ve been talking about getting one for years, but with the decluttering Izzy’s been able to find room for it, and I’ve been able to save up enough. We’ve got so many ideas and plans!

As is usual for me, this is way longer than I thought it would be when I started it. No longer having the uncertainty around care, knowing what things use my energy most and being able to sleep when I need to have massively improved my quality of life. Decent care workers, like the ones I had in 2022-early 2024, do help me and especially Izzy, but inconsistent ones who won’t follow a written care plan make things actively worse. We’re doing good.

I’m so lucky to have my family, friends, and especially Izzy. I wouldn’t be here without her.

Most of the time I don’t mind not being able to walk. I always found it painful, even from childhood, with low stamina. I was constantly rolling my ankles and once POTS started kicking in age 12 it became very much not fun, though I wouldn’t know that’s why it made me so dizzy and ill until late 2014. Being able to walk again would be useful and if I got the chance again I’d grab it (like I did 10 years ago) but it’s less important to me than mobility in general.

I do miss being able to sit upright though, or stand. Sitting would mean more time in my wheelchair, and being able to go out and do things. Sitting upright would mean I could fit in more places and potentially use a smaller, more portable wheelchair. Standing would make transfers much easier and mean I could reach stuff Izzy can’t (I’m quite a bit taller than her).

I got to the point of being able to sit up for a few minutes in 2022, but then I caught Covid and since then I’ve not managed more than a slight head raise without severe symptoms and payback. I’m working on it but it’s very slow progress. ME really sucks in that the more you push the worse you get. I’m hopeful that I’ll get there eventually

I am happy I’m able to get on my computer again, and blogging is helping reduce the number of nightmares I’m getting so that is positive. And things could be so much worse. I’m very lucky.

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

It’s becoming more obvious to me that dysautonomia (dysfunction of the autonomic nervous system) is causing the worst of my symptoms right now. Which is a problem, as that’s things like heart rate, blood pressure, breathing, digestion, urinating, and everything else the body does without thinking about them. POTS (postural orthostatic tachycardia syndrome) is one form of dysautonomia, but ME can cause others.

The main ones causing me bother are heart rate and blood pressure (making me super dizzy and unable to sit up, amongst other things) and digestion. The first I’m used to, as it’s one of the reasons I’ve been bedbound so long. The second one has recently got worse, and I’m not happy about it. I’m also having issues with breathlessness and bladder stuff, but they’re manageable.

So digestion. About a month ago my body decided that solid food was just gonna hang out in my stomach for more than a day. Which I know because sometimes it comes up and reminds me it’s not moved on to my intestines yet. I’ve had reflux and regurgitation issues as long as I can remember (one of my earliest memories is bringing up milk and apple while in nursery, so I was 3 or 4), so I’m used to it. I’m not used to bringing up identifiable bits of chicken 37 hours after eating it, or rice 26 hours after doing so. 10-12 hours is my normal since getting ME.

I’ve had it before, and previously I’d give my stomach a bit of a break by swapping to liquid foods for a few days, and that would be enough to sort it. It’s also previously only happened when my ME has been really bad, so I’d normally be struggling to chew as well so liquids helped there too. I figured I just didn’t have the energy to digest properly, and once I came out of that bad period it resolved itself.

This time, my ME isn’t actually that bad. Chewing isn’t difficult. I’m able to do basic self care tasks like wipe my face and help with things like changing my top. I can even use cutlery every few days. I have enough energy to watch films and read books. In those ways, I’m doing pretty good for me. But I can’t digest solid food properly.

I swapped to liquid and dissolvable foods, following what my dietician told me years ago when chewing was impossible, and it did help. I was only bringing them up for 12-14 hours after eating, which isn’t amazing but I’ll take it. I’ve also discovered the combination of soup and milkshake is not one I like, especially mixed with stomach acid, so I really need to leave at least 14 hours between them. Rusks go with both, and have the advantage of being solid enough to feel like I’ve eaten something, but pretty much liquid by the time I’m swallowing it. I’ve eaten a lot of rusks.

Every few days, I’d try a bit of rice or banana to see if it was getting better. And until last week, it wasn’t, so I went back to the liquid foods. Then I again tried rice, and I stopped bringing it up after about 12 hours. Since then I’ve had a few days where I’ve been okay with what I’ve eaten, and others where I’ve needed my antiemetic to keep it down and it’s still coming up the next day. I think it’s getting better but slower than I’d like, and I’m mostly only having one meal a day with snacks which isn’t ideal but better than nothing.

As for what’s wrong, we suspect I might have something like gastroparesis (partial paralysis of the stomach), which is not uncommon among those with my combination of stuff (especially hypermobility and dysautonomia). I’m too ill to get tested though, and it’s not yet serious enough to make us worried, as I am still able to eat, even if it’s not necessarily what I want. I’m sure it’ll resolve itself like it has done previously. My IBS continues to be a pain, but it’s my normal so that’s also reassuring.

I do want to know why I still get hungry while my stomach is full though. That one I can’t figure out. Good for making sure I still eat, bad for my nausea and reflux.

</end of rant>

Other than that, I’m mostly doing okay. I’ve already read 7 books, so I suspect I’ll be upping that goal soon. I’ve watched a couple of films, and have started raising the back of the bed in the hopes of getting back to sitting up, though I overdid it one day and got payback. I’ve also been doing some planning.

Izzy’s leaving the country this month. Twice. A few months ago she booked a cruise to northern Europe with some friends for her annual holiday/break from looking after me. That starts on the 30th March, so I was already updating my care home instruction book and sorting things out for that. Then last month she got asked to go to the USA for a work trip. This is a massive opportunity for her, so we said yes. This event starts on the 19th March.

We get 4 weeks of respite a year, though it turns out it’s not January to January like Izzy thought, but July to July, which meant we only had 15 days left. Social services have been very good and given us the extra we need as a one off, which we’re very grateful for. It’ll be the only time I go this year, so that’s fine.

Izzy will be home the week between the two trips, but I’m not going to be well enough to travel twice in such a short space of time so I’ll just stay at the care home until she’s home from the cruise. Which one? We don’t know yet.

All the ones with nursing care I’ve previously stayed in near here, and the others within easy travel distance, can’t take me. Mostly because they have no room or aren’t doing respite right now, one because they think they can’t meet my needs which is better to know beforehand but frustrating. Izzy’s now trying ones that are further away and we’re accepting I’m going to be more ill. I’m meant to be going in on Friday so there’s really not much time (Izzy has been trying to sort this out for the last couple of weeks, so it’s not her fault).

Am I well enough to travel? Nope. We know ways to mitigate the worst symptoms, and luckily unlike when I go to hospital I don’t need to be able to communicate clearly at the other end (we do warn them) so I can mostly shut off and just try and recover. Going into respite last year it took about 3 months to recover once I got home, but hopefully because my ME symptoms aren’t quite as bad (even if my dysautonomia is worse) it won’t take that long this time. Care homes are not a good place for me but Izzy being unable to continue looking after me would be worse. The extra week and a bit for the work trip won’t make that much of a difference.

Izzy has requested I don’t say exactly what her work trip is, but there’s no way we’d have been able to afford it. Luckily we’re not paying To help, her boss has agreed that as me going into respite is essential for Izzy to go, the day I go in counts as a work day. If she’d not been going on the work trip, I’d have gone in on a day she’s already requested off as holiday before her cruise, so this is cool and fair. Hopefully she gets a lot out of the work trip, and that more people will know about Arcade Paradise VR (the reason she’s going). I’ve demanded she brings home some peppermint Lifesavers, since I remember really liking them as a kid but they’re too expensive to buy here. I also want pictures of San Francisco and planes.

The cruise is going to be fun. Same friends and cruise ship as she went on last year, but another friend in the same group has been convinced to go. Last time it was to the Norwegian Fjords, this time is northern Europe (Germany, the Netherlands, Belgium). I’ve been involved in the planning, have been promised lots of photos, and a trip to the zoo to see penguins (and meet another online friend who lives nearby) has been organised. I’m mostly hoping I’m well enough to video call while they’re at the zoo so I can see the penguins, but if not Izzy is going to film them for me. I’ve also told her to try a fresh stroopwaffel.

To add to my anxiety over not knowing what care home I’m going to stay in, my home care is all messed up right now. Previously I had a stable team of 3 amazing care workers, but two of them have left in the last month, and the third only does Tuesdays (and has taken this week off). I have been asking who is meant to be doing my calls, but it’s been changing on the day and we’re not getting told this. They’ve also been changing the times of the calls without letting us know, so I keep panicking. I’m hoping it’ll be more stable when I come home again, but we’ll see.

The combination of everything means I’ve been struggling to sleep until I basically crash. I’m also both drinking and weeing more (caused by adrenaline), meaning Izzy’s being woken up more often to deal with that. Once I know what’s going on it’ll be fine, I just need to get through this period. Being Autistic is mostly great when things are going well, but I really struggle with uncertainty and change, which is what’s currently happening.

It has been fun planning for Izzy’s trips though. When I couldn’t sleep one night she gave me the job of finding her a new suitcase as she gets one checked bag for the work trip and her current one is noisy and awkward to pull. I gave her multiple options and she decided to go for the biggest that met the size requirements, not realising it’s huge. It’s purple and lightweight though, so will be good. Just need to figure out where we’ll be storing it when she gets home again. We also found out American Airlines and Alaska Airlines allow huge cubes that would be easy to transport a human in, if it weren’t for the 27 kg weight limit.

What I do in the care home depends on how well I am. I’m hoping I have decent enough wifi or 4G so I can watch stuff, and I’m taking my Steam Deck and adapted controllers so I can play games if I’m up to it. Over the next couple of days I’m choosing clothes and downloading games and stuff to watch in case the connection isn’t great. I’ve already updated my care plan/instruction book (there’s only one extra section to clarify something). If there’s a TV I’ll take my Chromecast, if there isn’t I might take one depending on how difficult it is. There’s also F1 to watch if I get a good enough signal to stream it.

If I’m not well enough for any of that, Reddit exists for when I’m conscious, and adrenaline has a massive effect. I’ll also take my galaxy projector to watch if I can’t brain at all. Worst case scenario is I sleep and rest a lot, and I can do that in any bed if I’m in a room by myself, which I will be. I doubt I’ll be well enough for visitors but I’ll let local people know if I happen to be.

How much I’ll be able to talk to Izzy (probably via WhatsApp) we’re unsure about right now. Definitely not while flying, maybe not while working or partying (apparently that’s also work?) in the US, but probably at the airports, in the hotel, and when just being a tourist. When she’s in the UK it’ll be similar to our normal when I can’t speak, and when she’s on the cruise we can talk when she’s in port, but only on sea days if she buys WiFi which we’ll try to avoid (she caved last time).

It is very weird to not talk to her at all for a day. Since we got married that’s happened twice – once when she was in hospital without her phone, and the first sea day on her cruise last year. If my sleep is all over the place it might be asynchronous, but that’s one of the benefits of using a messaging app.

Penguins are still good though. Floof (the baby little blue fairy penguin I saw hatch on a New Zealand webcam stream) grew up and left the nest, so I’m now watching another young penguin go through a molt in the same colony. I’ve also been watching the burrow cam of some Australian fairy penguins, where there’s two chicks going through their first molt. I love that I can watch them from bed on the other side of the world.

If I’m awake this (Tuesday) evening I’m planning to watch the Barbie film with Izzy. Hopefully I’ll also have more of a clue with what’s going on by then too. Until then I’ll keep distracting myself with penguins and looking up all the things Izzy will be too busy to do in San Francisco next week.

Reading

Reading 15 books I mentioned in my general goals list, before I realised it was getting way too long. I’ve managed 2 books so far, and I’m in the middle of a third. I’m not too fussy over what I’m going to read, but I’m hoping to progress with rereading all the Chalet School books I have access to on ebook, and continue reading Terry Pratchett’s Discworld books in published order, interspersed with other stuff. I’ve got well over a thousand books on my to read pile, so often the problem is choosing what to read next, though Storygraph can help there. I’m deliberately avoiding anything too heavy right now, but if I improve maybe I’ll change that.

Separate from actual books, I also want to catch up on my This is True premium newsletters and chapters of The Sisters of Dorley (which is technically also a book series, but I get it emailed to me by chapter via Patron so it feels different). I enjoy both, just got behind while ill.

TV Shows

I’m starting to be well enough to watch things again, and I’ve got quite a backlog. I definitely want to catch up with Doctor Who, Star Trek Discovery/Picard/Lower Decks, and Hilda. Izzy tells me the new Gladiators is good, apart from the hosts, so if I catch up with that I can watch with her. The shorts on Disney Plus are good when my attention span isn’t great. Taskmaster is always fun, and doesn’t require watching in order really. I’ve never watched Game of Thrones or The Expanse, or many other series that came out in the last ten years, so my problem is having too much to watch rather than not enough.

For live stuff, I’m going to be concentrating on Formula 1 races. I like cars go fast, and it’s something I share with Izzy (if I’m well enough she joins me in my room to watch). Silly season has already started, so it’ll be fun to follow that when I can.

Usually I’d also try and watch Eurovision, but this year it very much depends on what happens with Israel. I’ll figure it out nearer the time.

If I manage all of Formula 1, and at least one season of something else, that will be good.

Films

Another one where there’s too much choice. Top priority is the Barbie movie, which I’ve been told I’ll enjoy and is excellent. I got a code to purchase a free film in December and this is what I bought, so I’m just waiting for the right time. I still want to continue the Marvel films up to Endgame, and I think the next one I need to see is Iron Man 3. Also on the list are Star Trek: Beyond, the Warcraft movie, The Hunger Games from Catching Fire onwards, and lots of Disney/Pixar films.

It doesn’t help that new films I want to see keep coming out faster than I can watch them. This year I’m looking forward to Inside Out 2, and I’m sure there’s others I’ve forgotten.

If I manage 5 films this year, I’ll consider the goal complete.

Games

My favourite. Games are amazing for dealing with chronic illness, so long as I’m well enough to play them. I’m lucky to have a gaming pc, Steam Deck, Xbox One X, and my android tablet to play games on. I also have access to a modified low force Xbox controller and Xbox adaptive controller with low force switches, so I need very little strength to use them (Special Effect are awesome).

My tablet is the most accessible, as it’s got a decent sized screen, can be used with one finger if needs be, and it’s my main communication device so I always have access to it. I’m always on the hunt for interesting games that can be played with one hand on there, but right now I’m playing Godville, Penguin Island Puzzle (a 2048 game), Castle Solitaire, Cookies Inc., Usagi Shima, and Vampire Survivors.

My goals for my tablet games are to complete all the achievements on Penguin Puzzle Island, unlock everything in Vampire Survivors along with completing every stage on every character (doable if new content isn’t released too quickly), and continue playing the others while I still find them fun.

On Xbox (including via cloud streaming if that works better) I’m wanting to finish the Frog Detective games and Unpacking, and if Izzy is available play Untitled Goose Game with her. I have Game Pass so if I find any new games on there I can play them too. Or I can just stack the boxes in Arcade Paradise again

I have so many games available on my Steam Deck and PC. This year I want to focus more on games that are actually completable to some extent, though if I can get on my computer enough to make playing World of Warcraft worth it, I’m definitely playing that.

I’ve started off well by completing the DLC for A Little to the Left a few days ago, then finishing all the achievements and seasonal content. I’m currently playing Sticky Business and Stray Gods, both of which feel like they should be completable this year. There are a few games I really want to try soon, like Dordogne, Cats Organised Neatly and Journey that also feel like they won’t take forever.

For longer games, I’d like to make progress in My Time in Portia, Mass Effect 3, and Plague Inc. Mass Effect requires me to be on PC really, but the other two I can manage on the Steam Deck. Too many excellent games, not enough useful time to play them all.

Overall, if I manage to complete 5 games I’ll be happy.

YouTube/Twitch

These are the easiest watching stuff things I can do. If I’m well enough to put the telly on, it’s usually to watch one of these, even if it’s mostly in the background to keep me company. I’ve got a backlog of paid for (membership/Patreon) videos I want to watch, so hopefully this year I’ll get caught up. Other than that I want to get back to watching my favourite Twitch streams (prioritising those I also moderate) and also watch/listen to Dice Funk and other things I like on Youtube.

That’s all of them. Lots of goals, but I’m not expecting to meet all of them and a year is a long time. If I continue improving (or at least not getting worse) then I should make decent progress. It also helps me when I have the energy to do things to know what I want to do, so I don’t waste it all trying to decide. I’m so happy that I’m now well enough to do these things

Read 15 books

The only one I remember from last year was to read 20 books. I managed 10. I figured I’d start with a goal of 15 since I feel more able to read again (already managed two books) and I can up it if it feels too low.

Sort out my social media

I miss talking to people, and I’m hoping that with my slight improvement in brain stuff I’ll be able to manage it more. I currently use 6 services, and need to figure out which are most useful to me and how best to use them. I’ve found a multiposter website which helps a bit with posting at least, and Firefox with add-ons is now usable on my tablet.

• Discord – Go through servers, leave unneeded ones, reorganise them so the most important ones are at the top.
• Twitter – Find the people who I want to keep up with who haven’t moved, unfollow those I don’t/struggle with, see if there are ways of blocking the intrusive posts.
• Bluesky – Remember it exists Find those who moved over from Twitter I want to keep up with. Give those I know who want to join invite codes.
• Facebook – I found an add-on that makes it much easier to use by blocking sponsored/suggested posts, so I just need to leave unneeded groups, mute/unfriend those who I struggle with, and favourite those I really want to keep up with.
• Instagram – Remember to use the following mode, maybe occasionally post stuff? When well enough, comment.
• Mastodon – Continue organising my lists, check for Twitter friends who have moved over, upload penguin emojis.

I think Mastodon will continue to be my main social media service, but not everyone is on there so I’ll try and check in on the others reasonably regularly. I’m not going on Tiktok as it’s far too overwhelming, and I don’t use YouTube as social media.

Create list of meals we both like

Izzy and I are both forgetful. It’ll make food shopping a lot easier if we know what we want to eat. We’ve done well to reduce how many takeaways we’re eating by swapping to Ocado for our main shop (they put the use by/best before dates on the receipt so I can see them, and they tend to be longer so we waste a lot less food and are actually saving money), so the next step is to list our favourite foods, how easy they are to make, and what we should keep in stock for when my health plays up and I can’t feed myself or chew.

Do more loom knitting

This one depends on both my hands doing well and me remembering to ask for the stuff to be given to me, but I miss creating things. I’ve got three projects I want to focus on:

• New arm warmers – Simple, but require accurate row counting so needs some concentration.
• Hat and scarf set for Sammie – I started this a few years ago, but realised quickly that I needed to redo it with the extra pegs on the loom removed. That’s going to require Izzy’s help. The patterns are simple but the yarn is a little fiddly.
• Hat and scarf set for Izzy – The easiest of the three, as the yarn I’ve picked is easy to work with and the patterns are pretty much keep going until it’s big enough. This one I can do while watching or listening to something.

Eat more vegetables

I love most vegetables. I want to eat more. Fruit is easy, because Izzy can just hand me a pear or a pot of prepared fruit or similar even at 3am, and when I can’t chew the baby fruit pouches are tasty cold.

Vegetables are harder. Literally, for most of them, when uncooked. I like things like raw carrots, but they’re not worth the digestive pain they cause. Cooking them is often beyond Izzy’s ability if I’ve been asleep all day, and the baby veg pouches are not nice cold (we’ve not yet tried them hot, because that’s cooking).

We’re looking into a safe way to give me soup that also isn’t too complicated for Izzy. She mostly vetoes it because she’s fed up of me getting covered in it, which is fair. I wanted to replace my Sucup as the mouthpiece went missing, but they’re not sold any longer which is annoying.

We’re going to keep microwave veg packs in stock (preferably without too much sweetcorn which is fiddly to eat with hands) and also sweet potatoes which I like just microwaved and then topped with cheese. I’m going to keep looking for options when I’m awake only at night, preferably that don’t cause massive pain.

Drink Tea

I’m British. I like a good cup of tea. Izzy does not like me and the bed being covered in hot tea, which has happened even using various special cups and straws. I’ve solved the milk being off whenever I want a cup by buying milk powder (I’m not fussy), now we need to figure out a way I can drink it safely that is also easy for Izzy. Hot chocolate has the same issue, but should also have the same solution.

Work on sitting up

It sucks having to start from the beginning again, but I’ve done it before so I can do it again. For much of the November/December relapse I had to tilt the bed backwards so my head was lower than my heart, but I’m back to flat now with my usual two pillows. My dizziness is also getting back to my normal, so I’m hoping soon I can start working on raising the back of my bed so I can hopefully get back into my wheelchair without it causing another relapse.

If I can sit up enough, go outside for fun

It’s been over two years since I last went outside other than to go into hospital or respite, and I was on a stretcher for the former and completely out of it for the latter. Since my wheelchair tilts and reclines, I don’t need to be that sat up to be able to manage it. Even going on the ramp would be awesome.

Work on making my bedroom nice

My bedroom is currently a mess, with a lot of clutter and has random blobs of blue tack and missing paint on the walls where things have fallen down, which really bugs me. I got a new curtain pole and curtains in 2022 which helped a lot with the window (and means it’s much easier to adjust light levels).

As I’m not well enough to have it redecorated right now (and we’ve got no idea where we’d put everything to get it done) I’m hoping to at least get the blue tack off the walls, and cover the missing paint with posters or stickers. Izzy covered up one patch with a penguin sticker and it makes me smile every time I see it, so I know that can work. We have Goo Gone for when it’s time to remove them to decorate.

I’m also slowly sorting out my bed bags and want to work on my bedside trolley. During Covid my room became a bit of a dumping ground for anything Izzy didn’t want to misplace, on top of the stuff I need, so I’m hoping quite a bit can go (either out of the flat or in a better place).

We’re getting an hour a week of help for tidying and cleaning, so even though I could only tolerate 20 minutes last time progress was made. Apparently the rest of the flat is much better too. With that, and little things like having matching bedding and displaying photos and penguins, I’m hopeful it’ll be nice in here again

See People

I’m not well enough for this right now, but I miss seeing people. I know there are people who want to see me too. My brother has a boyfriend I want to meet, and there’s friends I’ve not seen in years. I’m hoping I’ll manage it later this year

That’s quite a lot. No idea yet how achievable they are, especially those requiring help from other people, but I like having things to look forward to and having stuff to do when I’m bored. My awesome carer says this is gonna be my year, and I’m going to do my best to make it so

I had a good Christmas overall. I was well enough for Christmas dinner, including my birthday roast potatoes (I asked for them as a birthday present and was willing to wait 6 months for them). They are the best roast potatoes in the world. The lamb was good too

I was also thoroughly spoilt with cards and presents. A huge Piplup (penguin Pokémon) Squishmallow, penguin chocolates, penguin Lego, a hat, Icecue (another penguin Pokémon) pin badge, magic snake puzzle/stim toys, the penguin calendar, and I’m sure I’m missing some. The messages in the cards made me feel so loved and connected. I am a very lucky penguin.

I saw Sammie just before Christmas, to give her both her Christmas and birthday presents. Somehow she’s now 20?! And studying for a degree?! She eventually wants to become a video game developer like Izzy. She’s at the point where when she’s asking for academic help I can’t give her it, but luckily Izzy can. I’m really proud of the woman she’s become. Seeing her was well worth the payback.

Also just before Christmas we got a video doorbell, as the doorbell we had for our back door had died and that’s the side most deliveries and people go to. I was concerned about it as it’s a small block of flats, but Izzy told me one of the other flats has one and I discovered we could turn the motion detection off, which both makes the battery last longer and means I’m not accidentally spying on the others in the block. I can watch it live though, which is great for feeling less confined. It also means if I hear the doorbell going, I can easily check whether it’s a hallucination or not without disturbing Izzy.

Otherwise it’s been quiet. Still not well enough to watch much, though I popped into a couple of Twitch streams over the holidays. The last couple of days have been a bit better for that, so I’m watching a little blue fairy penguin nest live stream on YouTube. Yesterday I got to see a chick hatch from its egg! There’s a sibling that’s still yet to hatch which should happen in the next day or two. The chick is still in its scrunkly stage, where it looks more like an alien than a bird. It’s adorable.

I’m due a B12 injection (turns out I’m deficient and it might be partially responsible for some of the neurological issues I’ve got going on, and some of the fatigue) and I’m hoping that once it kicks in I’ll be able to do more. I don’t like them (needle phobia), they hurt, and they make my mouth taste weird, but they do help me be less foggy and make it easier to stay awake. I also don’t want to make any neurological damage worse, which is what would happen if I didn’t get it. At some point I need to talk to my GP about a few other niggly things, but it’s not urgent.

I have some goals for the year, but I’m going to put them in a separate post so they’re easier to find when it comes to reviewing them. I’d also forgotten how much I’d missed blogging. Writing that last post helped way more than I expected, and I discovered people still read these. Thank you so much

• Surviving Whamageddon. The one that gave me the idea for this list. It’s easy to not accidentally hear the song Last Christmas by Wham if you control any music you listen to. Even easier if you’re too ill to listen to any music at all.
• Not falling. Before I got so ill I could no longer get out of bed, falling was a frequent event. Even when I used my wheelchair, I’d sometimes fall during the transfer. Not being able to get out of bed and having bed rails means it’s been years since I actually fell.
• Avoiding traffic jams. If you don’t go out, you can’t get stuck in traffic.
• No commute.
• Not being rained on. If you have a roof or ceiling above your bed, you’ll not get soaked from rain unless something has really gone wrong.
• Staying out of the wind.
• Not getting sunburnt. My skin burns super quick, so I really appreciate not having to worry about it, or deal with the sensory nightmare that is sunblock.
• Getting out of many tedious chores. You can’t wash the dishes, clean the toilet or mow the lawn if you can’t get to them.
• Breakfast in bed. Every day.
• Only wearing uncomfortable clothes/shoes if you want to.
• Having the perfect excuse to get out of unwanted travel. If someone wants to see you, they can come to you. Can also sometimes work for those who live with you.
• Always having something soft and cosy nearby. My fuzzy electric blanket and cuddly penguins help a lot when I’m struggling.
• Not having to get up when it’s cold to go to the toilet. And as I’m incontinent, if I’m well enough to watch stuff or play games, I don’t need to (can’t) stop in the middle to empty my bladder.

I’d much rather be well enough to get up and do things, even the boring things like cleaning or commuting, but looking for the positives helps make things easier.

Long time no blog. Short version is I got Covid June 2022, and though the vaccines kept me out of hospital (just – breathing with O2 levels of 88% was not fun) it caused a relapse I’m still going through. I have a draft of a proper update blog post as lots of things have happened, but brain fog is preventing me from completing it.

I’ve gone from mostly bedbound to completely so. Since getting Covid I’ve gone out for hospital appointments and to go into respite, but that’s it. I miss being outside, even just to go on the ramp. Being too ill for visitors sucks. I make an exception for Sammie because the payback is worth it, but it’s months between her visits.

I was mostly coping okay with this, then at the beginning of November this year having a wash then my flu and Covid vaccines too close together has brought more deterioration. I feel guilty for struggling to deal with it. I’ve been much worse than this before, which isn’t helping the guilt as I feel I should be able to manage better.

I think it’s partially that once I’d recovered from the actual Covid infection, I still had things I could do that I now can’t, as the long term effects from that were more POTS and movement based rather than sensory. So I could watch YouTube, TV shows and Twitch streams. I could play video games using an adapted controller. I could manage going on my computer for a few hours a month. I even became a moderator for a couple of Twitch/Discord communities that have helped keep me going during the pandemic, which meant I felt like I was able to give back to them. Now I’m nearly always too ill, and it hurts.

I think Twitter imploding also hasn’t helped. When it shut down API access to third party apps, it stopped being the easiest place for me to keep up with people. Then lots of my friends left (for good reason), and they’re all spread out over different platforms. I do have a Mastodon and Bluesky account, but I’m struggling to use them even though I want to. Facebook is also overwhelming. Discord isn’t quite the same, being closer to chat rooms than a place to find friends updates and stuff, and there’s so many servers it’s impossible to keep up. I mostly stick to the two I moderate, with a couple more slow paced ones I look at when I’m able to.

I feel guilty because I know how lucky I am. Izzy is amazing, and I’m so lucky to have her. She still works full time from home, and yet tells me it’s okay to wake her up at night when I need things. Her job means our income is stable, and though we’re still on a low enough income to qualify for Universal Credit, it’s enough that we don’t need to worry too much about things despite the increased cost of living.

My main three care workers from the new agency I started with last year are excellent, and due to their stubbornness around wanting to keep to the same clients, most of the time I only have those three each week at set times, and it’s the same one for both daily calls. It makes a massive change from around 10-15 with the previous agency, and has reduced how ill receiving care makes me. I don’t even need a weekly rota (though I do have it in the calendar because keeping track of days is hard, and it’s a fortnightly rotation).

So many people with Severe ME are doing so much worse than me. Even I’m not even close to where I was at my worst. Most of the time I can speak, eat solid food with my fingers, roll over, and cope with a certain amount of light and noise. I have people who love me and believe in me. I feel guilty I can’t communicate with most of them.

To make it clear, I don’t think I’m depressed. I had depression for 12 years, so I know what that’s like. I don’t feel emotionless or very down. I’m mostly frustrated.

Before getting Covid I’d been improving, to the point where I could sit up for 2 minutes without vomiting or fainting for the first time in years. I had been planning to attempt a non-hoisted transfer on my 36th birthday. I can’t remember most of June or July of 2022, and based on what I can remember I’m glad of it.

Even after that, I adapted to my new normal. I figured out what I could and couldn’t do. I felt lucky that I’d stayed out of hospital, and that I could still do the things I enjoyed that helped me cope.

I think that now I can’t do those things (at least not without really bad payback) it’s why I’m struggling. Izzy’s doing her best to help but I can only tolerate her in my room for short periods and she has other things she needs to do. I think it being such small things that have made it this way hasn’t helped. Losing abilities because of something big (like Covid) is easier to deal with.

There’s one Twitch stream a week that really helps my mental health, so I’m prioritising that right now. There’s a segment called Little Victories, where everyone who wants to can share something they’re happy about from the previous week, no matter how small. Even before this relapse being there helped, but now it’s the main thing I’m looking forward to, and it’s worth the payback.

I’m also praying. Not always in words. I’m hoping with time I’ll get better, even if only a little bit. I know I’ll be okay, but also that it’s okay to be frustrated and upset right now. Not sure how to deal with the guilt, but I can work on that when I’m able. I’ve gotten through a lot worse.

I’m not expecting anyone to have read this, but if you have, I hope you’re doing as well as possible. There’s a lot of good in the world, and I hope one day I’ll be part of that.

Each day, I attempt to figure out several things. How much energy do I have? How am I doing with light, noise, smells, movement and touch? How well are my hands working? How upright can I be? How much pain am I in? Do I have a migraine coming? I’m pretty good at this now, but sometimes I miscalculate or something unexpected happens and I end up with payback.

On bad days, decisions are simple. The lights are kept dim. I wear my earplugs and ear muffs. Movement and touch is kept to the minimum required for essential tasks like toileting, taking medication and eating. Izzy spends the bare minimum amount of time in my room to care for me. I try and sleep, as I know that’s the best way to cope and get back to better days.

On my good days, I now have options. If I’m doing good (for me) sensory wise, I can watch something on my television. Or I can go on my computer. I’ve got a massive backlog of films and TV shows I want to watch from years of being too ill, so if I’ve also got some concentration I can watch something from my list. If I don’t, then YouTube is great.

If I’m seeking connection to other people, I’ll often watch streams on Twitch. Though I know it’s a form of parasocial relationship, being able to chat to someone live and with others watching the same thing really helps me feel less isolated, especially as you get to know other people in the community. The lack of expectation to hold a sustained conversation makes it much easier and it’s not important if I miss things, plus I can ask if I’m really confused. I’m sad when I miss my favourite streamers because I’m too ill to watch.

If I’m having a good hands day, I have to choose how to use it. Do I eat food requiring cutlery (I normally eat finger foods or liquids through a straw) or do I brush my teeth? I can’t do both, or I overuse them and can do less for myself the next few days, adding extra work onto Izzy. If Izzy isn’t available (sleeping or working) I might choose to play games on the Xbox instead or do some loom knitting. They all hurt but so long as I stop before they start spasming I’m okay.

If I’m having a good dizziness day, then I’ll be able to raise the backrest on my bed and not lie flat, which is something I’ve been working on for a while. I’ve also recently regained the ability to hold my head up for short periods, and lean forwards to make changing my top much easier. I’m hoping it won’t be too long before I can sit upright for a few minutes without either vomiting or fainting.

If touch is more bearable, then it’s time to take advantage of that and have a wash. If it coincides with a good hand day, then I’ll be able to wash my own hands and face, otherwise I need help. To reduce overload we usually use bed in bath wipes, but if I’m really doing good then we can use soap and water to get rid of the skin buildup.

Sometimes I choose to do less for a few days to store up extra energy for special events. These I can’t do everyday, but if I’m careful and time them well I can manage with minimum payback. Being hoisted in my wheelchair to go into the living room or go outside. Having my hair washed or shaved off. Seeing Sammie or a friend. Having a video conversation or one via voice (with text backup). Playing more difficult video games. Having medical or other appointments. Having Izzy join me in bed and cuddling.

My normal days are somewhere between my good and bad days. I’m very lucky to be well enough to make these choices. To be clear, even on my best days I’m still experiencing a lot of unpleasant symptoms. Muscle, joint and nerve pain pretty much everywhere, exacerbated by any movement or touch. Twitching, jerking and spasming. Constant headache, sore throat and flu-like malaise. Severe fatigue and weakness. Sensory sensitivities that though not as bad as on worse days, still require management like sunglasses, earplugs and noise cancelling headphones to go outside. Nausea, digestive issues and double incontinence. Dizziness, motion sickness and tachycardia. That’s the short version.

What happens if I overdo it or an unexpected event happens, like loud noise, strobe lights or strong emotions? Payback. Worsening of my normal symptoms and often new ones as well. If I’m lucky, I’ll get the less bad version and just need extra pain medication, a reduction in activity and a lot of sleep for a few days, then I’ll be back to my normal. If I get a migraine, which has many triggers, then add my antiemetic to that (if I figure it out before I start vomiting) and cold packs.

If I’m unlucky and get the worse form of my payback, things are not fun. On top of my normal symptoms getting worse, I get extra ones like severe muscle spasms and paralysis. Chewing becomes hard or impossible. My digestive system slows to a crawl and I’ll bring up food for multiple days. Speech disappears. Rolling over for pad changes takes everything I can muster, even with help. Often I desperately need to sleep, but I’m in too much pain to do so. Izzy being in the room is too much, and a handhold is agony. There’s nothing we can do except dose me up, heat my penguins and reduce as much stimulation as possible until things improve. The good news is it’s now rare for me to get this form of payback for more than a few days, though I’ve previously had periods of weeks stuck here. If I try and push through payback, I end up relapsing, where I lose abilities I already have and my normal days become more restricted.

It’s taken years to build up to be able to do what I can now. It’s really hard to do less so you can do more in the future, especially as I want to do everything myself and help those I love. I still have the thing where if I’m doing better physically like I am now, things are harder cognitively which is partially why I’ve not blogged in so long (the other reason is a friend died while I was writing a blog post and the grief and guilt fried my brain).

My body still likes to throw some surprises, like getting migraines from not supporting my head and neck properly while propped up and vaginal spasms making my most recent smear test incredibly painful and has my doctors recommending I get my Mirena coil changed under anaesthetic, whereas previously I had both done with no problems. Most things though are going in the right direction.

Having spent so long where what’s a bad day now was a normal day, and knowing that others with severe ME are like that or worse, with less support, I feel so privileged, even though I still want to be able to do much more. The choices I make are hard, but at least I’m well enough to have them.

The biggest was my 35th birthday in June. As Izzy and I were both fully vaccinated, social distancing and masking was still in place, and I was feeling up to it, I was able to go outside for the first time this year, and further than the ramp since December 2019. Joining us was my brother Martin, who I’d not seen since August 2020. We had an awesome day

We went into Gateshead, as it is within pushing distance and Izzy is very out of practice. It was weird seeing all the new social distancing measures, nearly everyone wearing masks where it was busy, hand sanitising stations and other changes. I wore my Pizza John face mask as I’d not had an opportunity to wear it before this, and I like it

Just as I was recovering from that, it was announced that social distancing and masking were no longer going to be enforced, only encouraged. Along with Delta causing symptoms even in those who’d had both vaccine doses, we decided it was best I stayed in again until we saw how that affected things, then I had a series of migraines and the weather kept changing so I wasn’t well enough anyway.

Izzy has cautiously been going out. She’s restarted Parkrun and seen a few friends. She also ran the Great North Run, her first half marathon since she started on hormones and officially as a woman. As expected, she was a lot slower than previously, but she did better than she expected and was extremely happy with her result. She’s finding it hard to get the motivation to go running outside of Parkrun, but since she’s doing a full time job while caring for me day and night it’s not surprising.

She’s been on hormones a few months now and her body is visibly changing faster than we were expecting. Apart from a couple of dresses and skirts Sammie and I bought her she’s mostly wearing her old clothes or stealing mine, so we’re going to have to figure out what she likes to wear and look into actual bras. She seems a lot more comfortable with herself, though going through second puberty is interesting for both of us.

One bad thing that happened is Izzy’s PIP renewal was denied, because apparently having a job means you’re no longer disabled (PIP is non-means tested). We wish it worked that way, but it doesn’t. Because of everything else going on (full time job, looking after me, starting hormones, having no help, The Event) she doesn’t have the mental capacity to ask for a reconsideration or appeal, but once things calm down again we’ll put in a new claim. She’s still entitled, just the normal lies and inaccuracies that assessors give.

We’ll also be affected by the removal of the £20 a week Universal Credit Covid help at the end of October. We’ll be okay, but it does mean having to reduce some bills and trying to rely on takeaways a bit less (which we have so frequently because Izzy isn’t able to make food everyday). We got a new big fridge freezer which helps, and Izzy managed to reduce our Virgin Media bill while also increasing our broadband speed which is good. Ocado have also started delivering in our area so before we lose it we did a shop for fancy food that has helped with the less takeaways thing. They sell Kex and Plopp, two of my favourite Swedish chocolates

I tried to get someone to come in and declutter/do a big clean, but two companies just stopped communicating with me and I’ve not had the energy to look for more. As Izzy is able we’re getting stuff taken by the council, and I’ve offered to use the money I put aside for the decluttering company towards her trans stuff if she’s able to do more of it herself, which is a big incentive and seems to be helping a bit with her executive functioning. She did manage to get enough done to get the new fridge freezer in, and a new dryer as it turned out ours had packed in. The new dryer is helping as it’s meaning we’re getting caught up on laundry which wasn’t helping matters. Luckily we bought them before our income reduced.

I managed to play World of Warcraft on and off until August, then I became too ill. I didn’t get on my computer at all during September, and was struggling to use my tablet at times. Today is the first time my brain has been vaguely working since then. What brain ability I have had has mostly gone into helping Izzy with stuff she struggles with, like reminders, food shops, timers for cooking food, making sure she gets up at certain times if I’m awake. When I’ve been physically okayish I’ve been able to have a wash, brush my teeth, and a couple of times even fold some clothes, but those days have been less frequent than I’d like.

The one thing I have learnt that’s new is how to solve a Rubik’s cube. It took me over 30 hours, and I’m not able to do it correctly every time, but I got there in the end. I bought one as a fidget toy, got really into watching speed solving on YouTube, then found a pdf guide that I was able to understand (the videos were too confusing for me). After a week my super cheap cube was annoying me too much with the spring noise (a spring scraping the plastic when it’s turned a certain way) so I bought a slightly nicer one (the YuXin Little Magic 3×3 M from Kewbz UK) and paid to get it set up so I knew it wouldn’t have any issues. It’s so nice to turn and much easier for me to use. I gave Izzy my other one but she keeps using mine instead

I also managed to finish my loom knitted arm warmers. I want to make another pair as they’re so cosy and also have a hole for my watch so I don’t have to take it off, though maybe in a slightly lighter weight yarn as sometimes they’re too warm. I need to find my yarn stash as it’s somewhere but I’m not sure where. As my hands are slightly better I want to try hand sewing some small items, so bought a hand sewing stitch book. It’s awesome but very heavy.

I was really struggling to use Daylio, and I stopped when I figured out why. Though it was fine for tracking activity, trying to figure out my mood was too much when my brain went to fuzz and to get to the activity tracking you have to go through the mood bit. So I’m now hunting for an app that will help me track things without needing to worry about moods. I’ve got Habitica for habit tracking and that works well, but it’s hard to see when I last did something when I’m on my tablet and I’m not using my computer often enough to check there.

The neighbours are a bit less problematic now, probably as the council warned them. Still have the occasional bad night where there’s someone outside ringing our doorbell and throwing stones, but most nights ear plugs are enough to block out the noise. I get very anxious when Izzy is out, but there’s not much we can do about that and I’m not stopping Izzy doing the things she needs or wants to do, especially as she’s doing so much for me.

I’m hoping that I manage another blog post before Christmas this year. I’ve got so many plans and being fuzzy and out of it sucks. Hopefully it’ll be better now

I got my second jab on Tuesday 4th May, and getting it was fine. Same person as the first time which helped, as we could skip the don’t get worried if I stop responding stuff. For the first few days I had a sore, useless arm and felt a bit fluey, but not as bad as the first jab.

The evening of Friday 7th May I woke up feeling horrendous. High temperature, chills, shakes, worse ME symptoms, severe nausea, and just generally feeling awful. Izzy had her jab that afternoon but luckily wasn’t feeling too bad, as she had to give me all the meds I’m allowed. I was only awake about 3 hours before my body forced me to sleep again.

I think it’s a mixture of vaccine side effects and ME payback from getting the vaccine, compounded by having new problematic upstairs neighbours, so my rest is being interrupted. I’m finally doing a bit better, but still am much weaker than my normal. It sucks having to stop eating because I can’t chew any longer rather than having finished or being full. I’m hoping to be back to my normal soon, as once I’m fully protected (which is meant to be the coming Tuesday) I’m wanting to go on adventures and/or see people.

Izzy had about a day of feeling lousy then was pretty much fine. She took the Friday she had the jab off, but was able to work again on the Monday. She’s also excited about the prospect of seeing people again.

I’m going to bullet point the rest of the updates as it’s easier for me and I want to finish this post.

• The sore arm from the first jab lasted 10 weeks. I really hope it doesn’t this time.
• Izzy has started sorting the living room and has set up a computer for Sammie to use. For me to get in there we need to remove some old furniture and stuff, which requires help. Hopefully soon.
• We got a new tabletop dishwasher called Bob. Bob is purple and my contribution was large googly eyes. It’s already helped Izzy so much.
• Izzy has gone private for her gender healthcare, as we don’t know how many years it’ll be before she’s seen on the NHS. Expensive but worth it. She’s already happier because there’s progress.
• Just after Izzy emptied her bank account to pay for that, we discovered we need to replace our fridge freezer. Typical. Our current one will need defrosting and the hallway needs the boxes of pads and stuff moving before we can get a new one delivered.
• We’re pretty sure Izzy has ADHD as well as being autistic, but neither of us have the spoons to sort out an assessment for her. It does help explain certain struggles she has that autism doesn’t quite cover (though there’s a lot of overlap).
• Izzy is also exhausted because she’s looking after me 24/7 along with being a game developer 40 hours a week for over a year now. If circumstances allow, we’re hoping she’ll get a break this summer.
• We’re not sure when we’ll get the careworkers back in yet, but it’ll be before Izzy goes back to the office.
• We don’t know when Izzy will be back at the office. We do know it’ll be a different office, and the new one is further away. We’ll have to take this into account when figuring out what times the care workers should come.
• We also need to sort out getting a new cleaner/house help person. As they’ll eventually be coming in when Izzy isn’t here, it’ll need to be someone I’m comfortable being in the flat alone with, which I wasn’t with our previous cleaner. I’m hoping whoever it is can help me organise my room – I have a plan, but need someone to be my arms
• I have some niggly and routine health stuff to sort out once things calm down. Nothing super urgent but they need doing. For obvious reasons I didn’t want to go to the hospital until I’m protected from Covid-19, and nor did I want to tie up a doctor or nurse for things that can wait a bit.
• When not experiencing jab side effects, I was getting on my computer and playing World of Warcraft once or twice a week. Not as often as I’d like, but enough to make some decent progress.
• I’ve gotten obsessed with the mobile game Idle Brick Breaker. It’s just colourful balls breaking bricks to make big numbers, but perfect when my brain isn’t working. I wish it were a proper idle game that progressed while not open, but watching it is great.
• Our new upstairs neighbours are drug dealers. We know this because they’re not quiet about it, and we can hear their shouted conversations. It’s also meant people visiting at all hours of the day and night, often banging on the communal doors, and sometimes ringing our doorbell or banging on our windows. There’s also a lot of yelling and arguments.
• My biggest flashback triggers are loud arguments and things hitting the window. I’m struggling quite a bit with them, panic attacks and dissociation. It’s also making my ME worse.
• The last time we had an upstairs neighbour involved with drugs he ended up getting murdered. Although that’s probably not going to happen this time, last weekend the flat upstairs was raided by the police as a man was found dead not that far away.
• Izzy and our other neighbours are reporting this to the housing when they can. Last time we were seriously considering moving. Upstairs know I’m ill in bed as our nosy neighbour told them, but that doesn’t stop them making so much noise they wake me up with ear plugs in at 1am some nights.
• Other than upstairs, it’s a pretty quiet area. Before they moved in the worst noise was the kids playing next door or the nosy neighbour vacuuming with her flat door open. Ear plugs deal with them fine.
• Penguins are still good. Baby penguins are being born and they’re adorable.
• We found a really friendly, accepting community on Twitch and Discord after a random raid. They like us both as individuals and as a couple. I overdid it for a few weeks watching streams and chatting because it’s just so lovely. They’ve really helped Izzy’s confidence as well.
• I commissioned the below emote to use on Discord. I love it

As expected, there were some side effects. Izzy had a sore arm, a bit of a headache, some extra tiredness and fatigue that lasted a day or so, then she was fine. Tuesday she was able to go for her first run in a while without issue (until she decided to add Ring Fit to it Wednesday morning – she’s no longer fine :P). I ended up sleeping through most of the rest of Friday and Saturday, and initially had a very sore arm that I couldn’t use, an impressive bright red lump, worse headache and flu-like symptoms than my norm, and generally being worse than my normal. Ibuprofen and extra sleep helped and I’m mostly back to my normal now. Feeling rotten for a few days sucks, but it’s better than getting Covid.

So far there’s no sign of any microchips, 5G or superpowers, which is disappointing but expected as those are conspiracy theories, not actual possibilities. There are no new autistic traits either, as vaccines don’t cause autism.

Though I still have severe ME and am still almost completely bedbound, before the vaccine I’d been improving since The Event started. Since going out wasn’t going to happen, I instead was able to watch TV shows and films more frequently and with less payback. I’m also able to occasionally brush my own teeth, wash my own face and the big one, sit up for long enough to change my top, though I do get payback from those. I’ve also been able to be more upright in bed for longer without payback. If touch and movement weren’t such big triggers for payback then I’d be able to do much more, but though I’m working on them they still are.

Once our vaccines kick in, we can look into having other people in the flat again (still taking precautions, because it’s not 100% effective). The main person I’m looking forward to seeing is Sammie. We want to set up a computer for her to use while here, but need to find a space for it. Hopefully we’ll get that sorted once we can have someone in to help get rid of some old stuff.

• Have at least 2 baths or showers – Nope. Didn’t happen. Had none. The Event meant I didn’t go into a care home and Izzy was far too overwhelmed to try and give me a shower.
• Use a toilet or commode – Also a nope. Requires too much organisation for during The Event.
• Go out somewhere nice with Sammie – We had plans! I was gonna take her places! She was gonna go to a Theme Park with Izzy! Then The Event happened. She came over three times in total.
• Keep up with Daylio (my diary) – Partial yes. Had a period in June and July where it just got too overwhelming for a bit, but I managed it most of the year other than that.
• Make progress on my Stuff that Helps series – Another nope. I’m blaming The Event for it being too much.
• Sort out my Twitter – I started this, but failed miserably. I need to be ruthless and unfollow pretty much everyone I don’t interact with, but it’s scary.
• Get my room more organised – Nope. See The Event that prevented me getting someone in to help.
• Read 20 books – I did this one Only one I fully completed.

So yeah, I wasn’t prepared for a pandemic causing massive upheaval, not having carers most of the year, and having to hide from the world even more than my normal. I think I’ll be more gentle with my goals this year.

• Don’t get Covid-19 – Obviously it’s very contagious, so it wouldn’t be anyone’s fault if I did get it, but as it’s likely to make me very ill we’re going to continue to basically shield and hopefully we’ll get vaccinated and then maybe I can think about going out further than that ramp again.
• Do more loom knitting – This is dependent on my hands cooperating and stuff, but I enjoy it and even if I only make things with the most basic e-wrap stitch, it will be good. Even finishing the arm warmers I’m working on currently will be a win.
• Plan getting my room more organised – Hopefully we’ll be able to actually do some of it, but if nothing else, planning to sort it out so I can just hand the plan over to someone when it’s safe for them to come in here will be helpful.
• Keep up with Daylio – Even if it’s just doing the mood portion. It does help.
• Read 20 books – Since I managed this last year, I’m hoping for the same this year

That’s enough to be getting on with. I do hope to use a toilet, get a bath or shower, go out with Sammie, and generally do more stuff, but after last year I think I’ll stick to ones that can be done even during a pandemic.