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 πŸ˜›
  • 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.

Day 25 – Dead Tablet

My lovely tablet, a Pixel C, has pretty much died. The charging port has been tempremental for a while, and this last week it’s been really difficult to get it to charge at all. Yesterday I bought a second hand Pixel C from eBay (I was looking at new tablets, but none of the ones I could justify really met my specific needs or were worse than what I had). It’s due to arrive either Tuesday or Wednesday.

This morning I realised it was refusing to charge above 15%, and that was with a lot of wiggling the cable in the port and stuff. Realising that I might not have long left, I quickly did the most important app backups and sent them to my phone. I also did a nandroid backup, but during it I couldn’t get it to charge at all so it dropped down to what it said was 7%. I was hoping that would be enough to boot it and move the nandroid backup over to my phone (the port no longer sees my USB C hard drive) but unfortunately just trying to boot it sent it to 0% and it shut down completely.

I left the charging cable apparently charging while I slept through the day, but when trying to boot it again it never even got to the lock screen before turning off again. That was with a dedicated USB C charger. I’ve swapped to a USB A to USB C cable to see if that will at least trickle charge (it was a bit more reliable last week, though wasn’t charging it enough while on it was while off) in the hope that it’ll get enough to be able to grab the nandroid backup. Tapping the lightbar on the back, it is flashing to say it’s charging, but I don’t know how accurate that is.

In the worst case scenario, I have a nandroid backup from September, backups of all the apps I was using from the 19th November on my Google Drive, and backups of the couple of apps that don’t cloud sync and I would miss the progress I’d made since then on from Monday morning on my phone. Luckily most apps cloud sync, so having the backups is just for convinence of not needing to login and redo all the settings again.

I might take the opportunity to try a different rom out on my new tablet. I was running Ressurection Remix, which I love the customisability of. It was on Android Pie (9) and was pretty suited to my needs. I do want to try Android 10 though, and there are beta roms for Lineage and Pixel Experience available for that. There are a couple of things not working, but other than the camera (which I don’t use as the one on my phone is much better) the same issues existed on my previous rom and didn’t bother me. If I don’t like them, it’s not hard for me to go back to Ressurection Remix. I even made a document of what to do when things go wrong so if I break it again I can fix it myself with my computer/Surface.

In the meantime, I’m mostly using my phone, though I’m on my desktop PC tonight as I’m feeling up to it and wanted to sort my emails out and maybe even play some World of Warcraft. My phone is great, but I struggle with the smaller screen for a lot of things, especially as I need such large text size when my eyes are playing up. I also keep hitting the wrong stuff. I miss using my tablet.

Tuesday afternoon I have the physiotherapist coming out again, but hopefully it’ll go better now I’m no longer feeling horrendous πŸ˜› Finally getting over the cold(s) has made a massive difference in how I feel, and means I can do more with less payback. My main issue with doing some of the exercises since I’ve been well enough has my sleeping pattern meaning Johan isn’t always awake enough to do them when I’m up to them, and I need his help. I’ve been doing the one I can without him, but I’m not even sure if I’ve been doing it right. As they don’t take very long if I’m well enough to do them all at once I’m hoping to fit them in before he leaves in the morning if possible.

This week at some point I want to see the barber. If I’m feeling okay after the physio, maybe I’ll go tomorrow. If not, probably later in the week, possibly Saturday between Johan doing Parkrun and the birthday party he’s going to (Johan is very busy :P). My hair is now long enough to tangle and hurt so the sooner I get it off, the better. I have some lovely penguin hats to wear so I don’t get cold. Penguins are awesome πŸ™‚

Day 11 – World of Warcraft

It seems I really needed that sleep. Once I woke up this morning (from a nightmare which wasn’t ideal) I was feeling much more like myself. Still full of cold but otherwise mostly at my normal level of functioning.

Since I was awake and kinda with it for once, I decided to go on my computer while Johan was at his volunteering. First was finishing reinstalling all the programs after the reformat last time I was on, and then I went into World of Warcraft.

In WoW at the moment there’s a 15th anniversary event going on. There’s some fun things included like revisiting old raids and fireworks, but most importantly for me is a 15% buff to reputation until January. To be able to fly in the newer areas you need to get revered (second highest) reputation with several factions, including two newer ones. I’d done all the older ones, but still had those two to do. I was able to get one of them to revered today so I’ve only got the last one now. Unfortunately my Rustbolt Resistance rep is only at friendly even after doing all the dailies I could today, so as I need to get through honoured as well it’s probably going to take a while until I’m able to fly. I did have fun with a jet pack in the Mechagon zone though.

The other advantage of being on my computer is that it’s so much easier to sort things out. I was able to get my emails sorted, buy various items that were in my baskets, and finish moving over from Chrome to Firefox. I was also able to go on video chat with Sammie for a while, which was awesome.

There was a lot of noise from the flat upstairs this morning. Banging, drilling and loud voices mostly, though at one point my lightshade was moving so whatever they were doing was vibrating the ceiling. I’m not sure if it was the council, their contractors or a new tenant moving in. Johan checked outside but the only van out there was a stairlift one, and they weren’t fitting a stairlift. I’m glad I had my noise cancelling headphones or there’s no way I’d have coped, and going on puter wouldn’t have happened.

I also changed my top today. I got a new one last week, so I’m wearing that. It says “Protect Earth – Penguins Live Here” and has a very cute penguin picture on it. I had to tell Johan not to pinch it until I’d worn it as he likes it as well πŸ™‚

Tomorrow I think I’m having my flu jab. No idea when that’ll be, but I’m hoping it’s a nice nurse. I know it’s not going to be the awesome practice nurse that did Johan’s as she couldn’t come on a Tuesday πŸ™ I’m a bit nervous but since flu was what triggered my ME I really don’t want to get it again. Having a cold is bad enough.

Day 5 – Nicky and Isabella

Optician’s appointment took it out of me, so I’m not going out today and will probably be sleeping soon. I’m having a Greggs vegan sausage roll for tea as I’ve been wanting to try it for a while. It’s really nice and I’ll probably get them again.

One of carers burnt a hole in Nicky’s body, so I needed to get a replacement. Grey is no longer an option, so I went for marshmallow pink, which is pretty much lilac so I’m happy. So is Nicky. Isabella is slightly jealous but she’s called that because grey adult penguins usually have isabellinism. They’re my main bed heaty penguins so I’m glad to have them.

Nicky, a very fluffy lilac and white penguin soft toy with pink sparkly beak and feet. Behind them is Isabella, a less fluffy grey and white penguin with an orange beak and feet.
Nicky and Isabella

2018 In Review

Later than usual as I overdid it over Christmas and New Year, then caught a cold so blogging just wasn’t happening. The overdoing it was worth it, the cold not so much. February is the same as January, yes? πŸ˜›

Since I started this blog, I’ve done an end of year survey. Time to update it for 2018 πŸ™‚

1. What did you do in 2018 that you’d never done before?
Get properly fitted for a wheelchair πŸ˜› Won a tribunal. I also went for a meal with Sammie, and met some of the Running Ninjas.

2. Did you keep your New Year’s Goals, and will you make more for next year? 
Some of them. I do have goals for this year but I’m not sure when I’ll be blogging them.

3. Did anyone close to you give birth?
My sister Meggy had a baby, so I have a new nephew! He’s very cute.

4. Did anyone close to you die?
No one super close, but a few people I was friendly with and a couple I wish I had been.

5. Where did you visit?
Local court for PIP tribunal in February (in the snow- getting onto the ramp towards our flat was interesting as we had no grip). Went into Gateshead/Newcastle in April and November, the second time Sammie joined us. Went into the care home in July, watched fireworks in the local park just before Guy Fawkes night, and went to Gateshead Parkrun in December.

6. What would you like to have in 2019 that you lacked in 2018? 
More time out of bed. Better health πŸ˜›

7. What will you most remember from 2018 and why? 
New nephew being born (because that doesn’t happen every year). Getting my new wheelchair, which hopefully will mean more freedom once my body starts behaving.

8. What was your biggest achievement of the year? 
Winning the PIP tribunal. It was a bit ridiculous it got to that stage, but I managed to answer all the questions and we got the result we wanted. Finally getting my wheelchair assessment sorted and a wheelchair that fits was also great.

9. What was your biggest failure? 
Only managing one shower all year. I think we might need to tell the OT that shower chair really isn’t suitable for me, as even adding extra cushions and straps and such doesn’t help enough.

I also ended up not completing the weekly blog posts, but that was because my brain just gave up after going out and then getting multiple colds.

10. Did you suffer any new illness or injury?
Apart from catching colds, I had a lot more migraines than I’ve had previously. Might need to mention it to the doctor as it is interfering with stuff. I also did something to my left hip in September and now I can’t straighten that leg properly and it often wakes me up with pain, which isn’t great. I was hoping it would get better by itself.

11. What was the best thing someone gave you?
Cuddles from Sammie and Johan πŸ™‚

Bilbo Bbox was pretty awesome as well.

12. Who impressed you this year?
Johan continued to make a ton of progress with his running and volunteering. Sammie continued being caring, thoughtful and awesome. Everyone who survived another pretty terrible year.

13. What made you appalled and/or depressed?
Politics. Responses to politics. TERFs. Bigots. DWP. People hurting my friends.

14. Other than food, bills and disability stuff, where did most of your money go?
Probably presents for Sammie and Johan. Every year I say I’m going to spend less, and every year I fail πŸ˜›

I also upped my Patreon donations after getting my PIP sorted, and bought a Switch that Johan mostly uses as the controls are too hard for me.

15. What did you get really, really, really excited about?
Sammie! Seeing friends! Bridges! Trains! Penguins!

16. What big events will you remember most from 2018? 
My nephew being born. Meeting the Ninjas. Getting my new wheelchair.

17. Compared to this time last year, are you:
a) happier or sadder?
Probably the same.
b) healthier or more ill?
Physically I’m doing better, cognitively I’m doing worse. I can hold my own head up again and it takes longer to faint when sitting more upright, but I end up super frustrated trying to navigate shopping websites as I can’t figure them out.
c) richer or poorer?
Richer. Got PIP sorted out and got a large back payment with it. It helped.

18. What do you wish you’d done more of?
Everything except sleeping πŸ˜› Mostly talking to friends and family, as that got much harder as my brain started playing up.

19. What do you wish you’d done less of?
Sleeping (though more wishing I needed less of it). Panicking. Feeling ill. Hearing things (like the doorbell and the phone) that aren’t actually making noise.

20. How did you spend Christmas?
Being spoilt and eating yummy food while watching stuff on telly πŸ™‚ Johan made roast pork this year, and his roast potatoes were even better than previously. It was awesome.

Didn’t get as many decorations up as I wanted though. Johan broke a foot from the Christmas tree and lost another so that didn’t go up, and although I had tinsel I didn’t get to put any up other than on my bed rails. We did have a Christmas penguin on our flat door though (at least I was told there was- Johan wouldn’t take a photo to prove it :P).

21. What did you love in 2018?
Other than Johan, Sammie, and family, I think following awesome people (and animals) on Twitter. Bilbo and @IamMrJ’s ratties get special mention πŸ™‚

22. How many trips out?
One trip to court for the PIP tribunal, two trips going to and from the care home, one trip around the corner to vote (which broke my wheelchair) and four fun trips, so eight in total. Could be worse πŸ™‚

23. What was your favourite TV programme?
Steven Universe again. It’s awesome. I got completely caught up (until the new episodes came out in December which I’ve yet to see). I also really enjoyed Doctor Who, though I’ve got a few episodes to catch up on.

24. Do you dislike anyone or anything now that you didn’t dislike this time last year?
Not really. I try to avoid people who act badly and hurt people.

25. What was the best book you read?
Burn the Ashes by Heather Shahan. Young adult dystopia without a love triangle! I loved the idea of the Talists, and Peony burying who she was felt painfully familiar to me. I’m also happy there were diverse characters without making it a big deal. I’ve also read the sequel Rush of Blood, but that’s for 2019’s list πŸ™‚

26. What was your greatest media discovery?
I figured out how to listen to podcasts! Because of how my brain works, I need to do something else that doesn’t involve language while listening, so I either play Animal Crossing Pocket Camp or I do virtual cross stitch. I mostly listened to Welcome to Night Vale, and read the transcripts afterwards to understand everything I missed while listening (as reading is still easier than listening).

I also started watching Jessica Kellgren-Fozard on YouTube. Though I was initially put off a little bit by her received pronunciation (I be working class) she’s awesome, disabled, and very, very gay.

27. What did you want and get?
Bilbo Bbox! Awesome Bilbo, disability, trans and penguin related tops and stuff! I also got to meet the Running Ninjas, received my new wheelchair, and took Sammie out to dinner. I also won my PIP tribunal.

28. What did you want and not get?
More showers. To watch the Great North Run in person with Sammie (one of the carers didn’t turn up so had to watch it in bed). To go in the living room more (Johan put stuff on the day bed). Johan never did buy me flowers – I ended having to buy them myself.

29. What was your favourite film of this year?
Deadpool. It was really funny. I’m glad Johan was able to watch it with me.

30. What did you do on your birthday?
Opened cards and presents, watched some footy on telly, and spoke to Sammie on video chat. Was a good day πŸ™‚

31. What one thing would have made your year immeasurably more satisfying?
Not having payback whenever I do anything requiring slightly more effort than normal πŸ˜›

32. How would you describe your personal fashion concept in 2018?
T-shirts with penguins, Bilbo or cool writings on them. Open back fleecy pyjama tops. Mostly purple.

Going out, add a purple shiny mermaid tail.

33. What kept you sane?
Penguins, Johan, and Sammie. Distractions like Twitter helped, as did chocolate (I believe it makes me feel better, so thanks to the placebo effect it does).

34. Which celebrity/public figure did you fancy the most?
Jessica Kellgren-Fozard. She’s gorgeous (and very monogamous, married, and gay).

35. What political issue stirred you the most?
We still don’t know what’s going to happen when Brexit happens. And the DWP continue making vulnerable peoples’ lives hell.

36. Who do you miss?
Everyone I’ve not been able to keep up with. It’s probably the hardest part of being ill.

37. Who was the best new person you met?
I’ve spoken a few times to one of Sammie’s friends. He’s awesome. I hope to meet him (and Sammie’s other friends) in real life at some point.

38. What was the best thing you ate?
Christmas dinner, especially the potatoes. Roast potatoes for my birthday please, Johan πŸ˜›

39. Tell us a valuable life lesson you learned in 2018?
It’s not worth engaging with those who don’t want you to exist.

40. A quote that sums up your year:
Penguins are good. I like penguins. 🐧