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 πŸ˜›

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 πŸ˜› 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 😊

Happy New Year!

It’s 2024. My new penguin calendar says so. My tablet says so. Izzy says so. It does not feel like 2024, but the evidence shows that it is the case. I hope you all have a wonderful year, in whatever form that takes.

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 πŸ˜›

I was also thoroughly spoilt with cards and presents. A huge Piplup (penguin PokΓ©mon) Squishmallow, penguin chocolates, penguin Lego, a hat, Icecue (another penguin PokΓ©mon) 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 πŸ’œ

Things being bedbound makes easier

Not being able to get out of bed sucks. You miss out on so many cool, interesting or even mundane things, you need to rely on other people, and there’s so much you can’t do. Very occasionally, however, there’s an upside. Some of these are pretty universal, others might be more specific to me.

  • 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.

I’m Still Alive!

Warning: Grumpiness Ahead

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.