Autumn Update

Spending most of my time in a fuzzy state has meant no blogging and a lot less being on social media. I’ll often have Twitch or YouTube on but communication is hard. Some things have happened since May though and I’m putting what I can remember here for future Danni.

Danni and Martin outside. Danni is in their wheelchair, wearing a purple hat, purple sunglasses, a Pizza John mask (man's face in red and white with a moustache), a purple penguin top, pink bib and purple mermaid tail. They are holding Poseidon (a baby emperor penguin) and Purple Penguin.

Martin is standing behind, leaning on the wheelchair. He is a tall white man with short brown hair, a big smile, and is wearing a grey hoodie, white t-shirt with blue and green image, and blue jeans.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Second Covid-19 Vaccine Get

This is my second version of this post, as just over a week ago I wrote one saying I wasn’t feeling too bad after getting the second vaccine. I just needed fact check something with Izzy, so went to sleep thinking I’d post it after I woke up. And I felt awful. I’m still not great but I’m hoping it’ll ease off soon.

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

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

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

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

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

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

Vaccine Time

On Friday 19th February, I got my first Covid-19 vaccine, as did Izzy. Mine was in the morning, and I got the Oxford AstraZeneca one because it travels best and I was at home in bed. Izzy got the Pfizer one in the afternoon as she was able to get to the local vaccine centre.

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

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

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

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

Goodbye 2020

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.

WTF is going on?

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.