Danni

2025 Update

Computers, Danni, Gaming, M.E., Penguins!, Physical Disability, Real Life

Happy 2025!

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.

Danni

10 Years…

Danni, M.E., Physical Disability, Real Life

Since the last time I stood and walked (3 steps). Still no idea why on the 18th May 2014 I had no POTS symptoms, but I’m very grateful for the memory. I’ve been unable to do either since then.

Danni, a tall white person with light brown hair and glasses, standing with a zimmer frame in front of a bed. They are wearing a purple nightdress, purple pyjama bottoms and green heeled boots.
10 years ago, standing in my room. Please ignore the mess – we weren’t expecting to take photos that day!

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.

Danni

Not ME Awareness Day

Autism, Danni, Gaming, Goals, Important Stuff, M.E., Mental Health, Physical Disability, Real Life

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 🙂

Danni

Dysautonomia Sucks

Autism, Danni, M.E., Mental Health, Penguins!, Physical Disability, Rant, Real Life

A rant, then an update.

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.

Danni

Entertainment Goals for 2024

Computers, Danni, Gaming, Goals, Real Life

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 😊