Category: Computers

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

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 😊

Danni

Goodbye 2020

Computers, Danni, Gaming, M.E., Physical Disability, Real Life, World of Warcraft

I hope you all had the best Christmas/holiday season you could under the circumstances. We had an okay time, decided to spread it out over a few days with presents on Christmas Day and roast pork on the 28th. I loved all my presents, though I still need to sort some out for those who didn’t have wishlists I could pick from. Sammie came over on Christmas Eve, and after donning full PPE we finally had a hug which was the best present. It had been over a year as I wasn’t well enough when she came over in February then The Event stopped her visiting much through the year.

I’ve still not left my bedroom, but Izzy has promised I can go on the ramp to watch fireworks on New Year’s Eve and I’ll wear full PPE in case the neighbour shows up. The fireworks will be at 6pm instead of midnight because of The Event. Instead I’ve been playing a lot of World of Warcraft Shadowlands, watching TV and films, reading a lot of Wikipedia/Wikitravel/Reddit and also sleeping through migraines (6 in December, which I’m not too happy about).

The Event has had a big impact. I’ve known several people to get Covid-19. Most were only slightly or moderately ill, but one friend is currently in intensive care on a ventilator, and she wasn’t in the shielding group. Even those who weren’t that ill initially are having symptoms long after the initial illness has gone. As my ME was triggered by swine flu we’ve been really careful, and as the rates have increased in our area Izzy has stopped going to local shops at all and only goes out for my medication and exercise when it’s quiet. We’re really grateful she can work from home still and are praying and hoping my friend improves soon, along with all those who are still ill.

Izzy managed to get graphics cards! We bought a new one as Sammie’s main Christmas present, and then she got an upgrade for herself, along with an upgraded CPU and motherboard and a ton of RAM. This means I got what was basically her old machine with my case and hard drives in it. I now have a GTX 1080 which is making World of Warcraft really pretty. She has an RTX 3090 so can do ray tracing and stuff, which I’m slightly jealous of but she can actually make use of that power making games for work. I also managed to convince Izzy to come back to World of Warcraft so she’s been seeing the new zones in all their glory.

Most of our big plans are on hold until we’re vaccinated. We’re both in group 6 for the UK priority list, me for having ME and Izzy for having asthma. As even when there wasn’t a pandemic I didn’t get out much we want Izzy to get it first, though once I have it we can get the carers back in and look into a cleaner again (maybe my brother). Izzy’s been able to do some housework while she’s on holiday from work, but we’re not quite there yet. We have a lot of cardboard boxes to get rid of. Once we’re vaccinated we’ll be able to have Sammie over more often if she wants to which would be awesome. I also owe her and Izzy a trip to a theme park.

My hopes for the last couple of days of the year are to finish reading Because Internet by Gretchen McCulloch, play a bit more World of Warcraft, and see the fireworks tomorrow. I’ll do a seperate post for my goals for next year and a proper review of this one. This is mostly an update post to get back into the habit of writing.

Danni

WTF is going on?

Computers, Danni, Gaming, M.E., Physical Disability, Real Life, World of Warcraft

So I’m still here. This is mostly good. Still haven’t left my bedroom, but have gotten out of bed (to make a sheet change easier) so that’s something.

My brother Martin came over in August to help sort the kitchen out, as Izzy was too overwhelmed to do it. He did an excellent job, and we wore masks when in the same room and stuff. As it went well he was meant to be coming back to help more, but then his housemate was exposed to The Virus and by the time his result came back negative cases in our local area had exploded again (not helped by the universities restarting) and it felt too high risk. We’re hoping he can come over when things calm down again as he’s better at cleaning and organising than our previous cleaner.

Having the kitchen sorted meant Izzy felt up to doing more in there, so we bought a bread maker and an Instant Pot to make things easier. The home made bread is awesome, though it goes dry very quickly so we need to find a way to keep it fresh for longer in case I’m asleep. We’ve been buying jam from Evesham Goldenberries to go on the bread, and it’s so good. I need Izzy to make more bread as that jam only deserves the best 😛

I’ve mostly been stable. Izzy being around all the time definitely helps me. The only new thing that’s bad is I’m getting motion sick in Minecraft again, which is very frustrating when I want to play Bilbcraft with friends and it’s been updated to the new version. I’ve been playing some World of Warcraft and Vostok Inc. which have been fun. I got the collector’s edition of World of Warcraft: Shadowlands, which is very shiny. Don’t know when the expansion is coming out though 😛

When I’ve been on my tablet I’ve mostly been playing Penguin Isle, The Pocket Arcade (which is made by a certain company Izzy works for… :P) and various Nanogram/Picross games. I’ve been spending less time on Twitter as everything is overwhelming, but friends are good.

Last week Izzy got her flu jab. She was in and out quickly, and it was done by one of the doctors. On Saturday it was my turn. District nurse came out, and we spent about 15 minutes chatting while she filled out paperwork and such. It hurt, but I didn’t go non-verbal or hit her so I’ll call it a success 😛

This week has been recovering from that mostly. For some reason my lower arm has been hurting more than my upper arm, and I’ve had a few days of feeling rotten and needing more anti-emetics and ibuprofen, but today I seem to be back to Danni normal. I’m glad as I’ve been wanting to go on my computer and watch more Hilda on Netflix.

No real plans for the near future, though we’re starting to think about Christmas. We’re looking at graphics cards but struggling to find new ones anywhere. Hopefully that will improve at some point in the next couple of months. I’m wanting to leave my bedroom at some point, but that requires either the living room to be accessible (which is hard for Izzy to do as she’s doing two full time jobs right now) or for it to be safe for me to go outside, when we have a neighbour who won’t keep her distance. We’ll see.

Danni

Things Feel Weird

Autism, Computers, Danni, Gaming, Loom Bands, M.E., Mental Health, Physical Disability, Real Life

I’m doing pretty good for me. Having Johan home all the time means no waiting for urgent care and shorter waits for less urgent care, which means I’m physically doing a bit better. Not being alone in the flat most of the day is great for my anxiety, even though I’m still spending most of my time alone. Unlike most people, I am used to being unable to go out or see friends and family, so a few more months isn’t going to make much of a difference (I last got out of bed on the 29th of December).

Being that little bit better means I can do my favourite things, like play video games and read a bit. I’ve managed to watch Steven Universe The Movie, and the first two episodes of Steven Universe Future. I’ve caught up with YouTube videos I have full notifications turned on for. I’ve had video chats with Sammie, voice chats with Johan and even was in a group chat with other This is True supporters (that last one did mean I slept for most of the next two days, but was fun). I even got my loom bands out and made a strap for when I use utensils and things so they don’t go flying when I spasm (looms hold things together when they get chucked, luckily).

We’ve also had many friends and organisations check we’re okay and offered to help if we needed it. So far it’s fine. Between deliveries and our local shop, we’ve been able to get everything we’ve needed except chicken, and that we can work around. I’m very grateful we’re not forgotten and hope those who do need the help get it.

It feels really weird to be doing well during a global crisis. The reason Johan is home is because people are becoming ill and dying from a virus with no known treatment. People are losing jobs and worse. I saw on Twitter someone being told that instead of getting personal protective equipment for her PAs (impossible to source as a single person right now) she should go in a care home, despite having been exposed to someone with COVID-19 symptoms. Care homes are terrible places for disabled people even in the best of times. This is wrong, just for the need of some face masks.

There are still some struggles. As we’re doing a modified version of shielding for me (because full shielding is impossible if you need personal care and I’m technically not in the extremely vulnerable group, just in the likely to die if there’s not enough medical care available group) the lack of skin contact hand holds (we hold hands while Johan is wearing gloves instead) and hugs is hard. As is knowing I’ll not be seeing Sammie or friends in person for a while, after having plans to do so. Johan is starting to feel cooped up, so we’re trying to figure out the safest way for them to go out (the main risk being our neighbour). It’s also a bit frustrating being well enough to go out for the first time in months but not being able to for reasons outside of my control.

I’m in the middle of setting up some routines based on our current circumstances, as my previous ones were based around my care calls, which we’ve now cancelled (along with the cleaner). I’ve got a list of options for things to do so I spend less time trying to figure them out. I’m working on the best way to prompt Johan to do tasks now their routine has also been messed up, and to replace the prompts from the carers and the cleaner (the better care workers would let us know if things needed doing which helped).

One problem we’ve yet to solve is Johan getting overwhelmed if I ask for two things at once, even if I give an order to do them in. I need to do so as if I don’t, I forget the second thing while the first is being done, and Johan gets frustrated when I realise again 10 minutes or so after they’ve sat back down. I also forget it if I try to type it. I know Johan finds my memory problems one of the hardest parts of my illness to cope with, and this situation makes it really obvious.

I’m frustrated that I can’t be the carer that Johan needs. Johan is frustrated that they struggle with providing some of my care. We’re still doing mostly fine, and not having to travel to work (or volunteering) means Johan has been able to cook more which I appreciate. I just don’t know how I’m meant to feel, and that feels weird.