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.

A gentoo penguin. It is in the water, with the top of its head visible above the waterline, and most of its body and wings below. It is looking directly at the camera.

It has a black head with a white band around its eyes, and a beak that is mostly yellow with a black line on top. The body and upper wings are black, and the belly and under wings are white.
Gentoo Penguin in Rotterdam Zoo. Taken by Izzy Brennand

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 🙂

Entertainment Goals for 2024

I like watching, reading, and playing things. Now I’m finally coming out of the November smol relapse (to contrast with the Covid big relapse) I’m actually able to plan what I want to achieve when it comes to entertainment. All of these are very health dependent, but hopefully I’ll manage some of them.

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 😊

Goals for 2024

New year, new goals. Normally this is where I’d review my previous ones, but after having a really bad relapse in 2022 I don’t even remember if I set any last year. Not a big problem though 😊 I’ve got quite a few for this year, though as always they’re very much health dependent, and I’m not expecting to manage them all. I have some for games, but they’ll be in a separate post as this is already very long.

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 😊

Goals for 2021

Most years I try and set some goals for the year, and review last year’s goals to see how they went. These were last year’s goals:

  • 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.

Goals for 2020

January was a write-off due to getting two colds. Right now I’m full of caffeine and taking advantage of my slightly less drowsiness to write this post.

Most years I make goals for the year to come. Last year I didn’t get around to making them, as I wasn’t doing too well at the beginning of the year. I did make some in 2018, but I can’t remember how well I did with them (other than only showering once). Anyway, the goals.

  • Have at least 2 baths or showers – Last year I managed one bath and no showers. I do need to get in touch with an OT to try and fix the shower chair not working for me problem, but hopefully when I go into respite I’ll have at least one bath and I also have an inflatable one that I just need to figure out the logistics of using (and help the other half be less scared of it :P).
  • Use a toilet or commode – This is staying on the list until I actually manage it 😛
  • Go out somewhere nice with Sammie – Last year we went to watch the Great North Run and to the cinema, and it’s great having a teenager who wants to spend time with her parents, so hopefully we’ll do something nice. One of her birthday presents is outings this year, though we’re still working out the details.
  • Keep up with Daylio (my diary) – This is really useful for keeping track of what I’ve done when, and is why I know I had one bath and no showers last year (and that the bath was in April). At the beginning of January I also added tracking my cognitive/pain/sensory and physical symptoms seperately, as sometimes I can be doing great with light and noise but be unable to move. Right now, I’m doing okay for cognitive (which is how I’m writing this), good for sensory, but pain is high and moving makes me feel horrendous. It’ll be interesting to see how much my mood is related to my symptoms, but to know that I need to keep it up to date.
  • Make progress on my Stuff that Helps series – Still thinking of a better name for it, but I’m hoping to take less than 18 months for the next post. I have the list of items ready, just need to describe how they’re useful.
  • Sort out my Twitter – I follow too many people, and can’t keep up with my timeline even though I spend quite a bit of time on there. This year I want to go through and unfollow some and put those remaining in lists so I have some chance of keeping up. To do this I need to get over the guilt I feel when I unfollow people who are awesome but aren’t ideal for me to follow.
  • Get my room more organised – this one is going to take some help, as I can’t do much, but I’d like my room to be sorted. A good start would be getting my clothes in my chest of drawers. I’d also like the wrappers removed from my rainbow roses.
  • Read 20 books – I managed this last year, and I’m hoping to do so again this year. My main problem is choosing what to read.

That is enough to be getting on with. I’m also hoping to get on my computer and play more World of Warcraft, but that is very health dependent. I also want to make a list of films and TV shows I want to watch now that I’m able to do so. Hopefully I’ll stop getting colds so I can get back to where I was in December and doing stuff 🙂