Author: Danni

The Purple Penguin! 31 year old autistic geek, living in bed with severe ME (myalgic encephalomyelitis). Likes gaming, purple and penguins.
Danni

Second Covid-19 Vaccine Get

Danni, Gaming, Gender Stuff, M.E., Mental Health, Penguins!, Physical Disability

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.
Danni

Vaccine Time

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

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.

Danni

Goals for 2021

Danni, Goals, Real Life

Most years I try and set some goals for the year, and review last year’s goals to see how they went. These were last year’s goals:

  • Have at least 2 baths or showers – Nope. Didn’t happen. Had none. The Event meant I didn’t go into a care home and Izzy was far too overwhelmed to try and give me a shower.
  • Use a toilet or commode – Also a nope. Requires too much organisation for during The Event.
  • Go out somewhere nice with Sammie – We had plans! I was gonna take her places! She was gonna go to a Theme Park with Izzy! Then The Event happened. She came over three times in total.
  • Keep up with Daylio (my diary) – Partial yes. Had a period in June and July where it just got too overwhelming for a bit, but I managed it most of the year other than that.
  • Make progress on my Stuff that Helps series – Another nope. I’m blaming The Event for it being too much.
  • Sort out my Twitter – I started this, but failed miserably. I need to be ruthless and unfollow pretty much everyone I don’t interact with, but it’s scary.
  • Get my room more organised – Nope. See The Event that prevented me getting someone in to help.
  • Read 20 books – I did this one 🙂 Only one I fully completed.

So yeah, I wasn’t prepared for a pandemic causing massive upheaval, not having carers most of the year, and having to hide from the world even more than my normal. I think I’ll be more gentle with my goals this year.

  • Don’t get Covid-19 – Obviously it’s very contagious, so it wouldn’t be anyone’s fault if I did get it, but as it’s likely to make me very ill we’re going to continue to basically shield and hopefully we’ll get vaccinated and then maybe I can think about going out further than that ramp again.
  • Do more loom knitting – This is dependent on my hands cooperating and stuff, but I enjoy it and even if I only make things with the most basic e-wrap stitch, it will be good. Even finishing the arm warmers I’m working on currently will be a win.
  • Plan getting my room more organised – Hopefully we’ll be able to actually do some of it, but if nothing else, planning to sort it out so I can just hand the plan over to someone when it’s safe for them to come in here will be helpful.
  • Keep up with Daylio – Even if it’s just doing the mood portion. It does help.
  • Read 20 books – Since I managed this last year, I’m hoping for the same this year 🙂

That’s enough to be getting on with. I do hope to use a toilet, get a bath or shower, go out with Sammie, and generally do more stuff, but after last year I think I’ll stick to ones that can be done even during a pandemic.

Danni

2020 In Review

Danni, Real Life, Review

Happy New Year? I’m hoping this year is better for you all. Izzy is back at work, but Sammie is off college, starting remote learning on Wednesday. My friend Sophie is still ventilated in intensive care, but not as bad as at her worst. I wish there was more I could do than pray.

Like for most people, last year did not go as we expected or hoped. There were some very bad parts, but it wasn’t a complete disaster. Time for my yearly review.

1. What did you do in 2020 that you’d never done before?
Experienced a global pandemic? I’m struggling to think of anything positive for this question.

2. Did you keep your New Year’s Goals, and will you make more for next year? 
I managed 2 of 6, but there were unforseen circumstances. I’ll be making more this year in a separate post.

3. Did anyone close to you give birth?
I don’t think so. If I’ve forgotten any, I’m sorry.

4. Did anyone close to you die?
I was no longer close to hir, but Mel Bagg’s death hit me hard. It shouldn’t have happened. I’m hoping there won’t be any this year.

5. Where did you visit?
I went all the way to the ramp to watch fireworks for 15 minutes on New Year’s Eve. Other than that I didn’t even leave my bedroom. This was mostly due to The Event.

6. What would you like to have in 2021 that you lacked in 2020? 
The Covid-19 vaccine so we no longer have to hide from the world as much. For us and for everyone else.

7. What will you most remember from 2020 and why? 
The Event, as the global pandemic affected anything else. There’s a chance I might remember the US election, but The Event is definitely the main one.

8. What was your biggest achievement of the year? 
Not getting Covid-19. This is mostly because we isolated ourselves from the world, but I’ll still call it a success.

9. What was your biggest failure? 
This is a hard one, as all the things I didn’t achieve were at least partially due to The Event. I’ll go with sorting out my twitter followers, as that was the least affected by it. I’ve also still got Christmas presents to sort out.

10. Did you suffer any new illness or injury?
I had an increase in migraines in December which wasn’t fun, but on the plus side I’ve not had a cold since February. Isolating has one plus side 😛

11. What was the best thing someone gave you?
The hug Sammie gave me just before Christmas. It was our only hug all year and even though the PPE made it awkward, it was amazing.

12. Who impressed you this year?
Izzy. She started a full time job, just before having to provide all my care since March without help or a break. It’s not been easy for either of us but we’re both alive and doing about as well as possible. She also came out as trans which in our transphobic society took a ton of courage.

Sammie has also impressed me with how well she’s been coping with The Event, asking for extra help at college when she needed it and being honest when she’s been struggling. I’m so proud of her.

13. What made you appalled and/or depressed?
People (and the government) not taking the pandemic seriously enough. Those spreading fake news that resulted in people not doing what they needed to, resulting in lots more people being ill and dying than there should have. Also the increase in transphobia, especially in the mainstream media.

14. Other than food, bills and disability stuff, where did most of your money go?
Does tips to takeaway delivery people count as food or separate? We’ve relied a lot on takeaways this year and as they’re risking getting ill, I increased how much we tipped for delivery. Other than that I’ve been buying more from small businesses as I can to try and help and because they have cool stuff like penguins and cats and small robots.

15. What did you get really, really, really excited about?
Sammie’s visits, the new World of Warcraft expansion (Shadowlands), vaccine development, penguins and Bilbo the cat.

16. What big events will you remember most from 2020? 
Mostly The Event. And that most other events being cancelled due to it.

17. Compared to this time last year, are you:
a) happier or sadder?
Sadder. I think it’s obvious why (hint: it’s mostly due to The Event). Could be worse though.
b) healthier or more ill?
Probably about the same. Not been able to go out but have been able to go on my computer more and watch more media instead.
c) richer or poorer?
Izzy got a full time job and our Universal Credit claim (and my PIP renewal) went through without a problem so our income went up, plus not having the carers or the cleaner in our outgoings went down so we’re financially doing much better despite a massive increase in takeaway consumption. We’re very lucky Izzy got a job she can do from home.

18. What do you wish you’d done more of?
I’d liked to have spent more time out of my bedroom, but The Event is both directly and indirectly to blame for me not being able to do so (can’t go outside as dangerous, can’t have someone come in to help declutter the living room because not safe). Izzy was too overwhelmed to help me shower but had bed baths instead.

19. What do you wish you’d done less of?
Having migraines, waking Izzy up in the middle of the night, and dropping things off my bed so Izzy had to go hunting for them under there.

20. How did you spend Christmas?
Found out first thing Sophie was in an induced coma due to Covid-19, so it was hard to celebrate. Slept quite a bit, watched some films with Izzy, ate a lot of snacks, messaged Sammie, and watched EllenFromNowOn’s Geoguessr stream. We video chatted with Sammie on her birthday (Boxing Day) which was good. Izzy made the pork roast we got on the 28th, which was lovely despite the lack of her roast potatoes. I’m hoping to get them this year instead.

21. What did you love in 2020?
Other than the obvious (family, friends, penguins, cats), seeing how many people and communities pulled together to deal with The Event was brilliant.

22. How many trips out?
One. I spent 15 minutes on the ramp on New Year’s Eve to watch the fireworks over Newcastle. That was also the only time I left my bedroom, and I only got out of bed otherwise for sheet changes. I’m hoping once things calm down and we’re vaccinated I can get out again.

23. What was your favourite TV programme?
Toss up between Star Trek Discovery and Hilda. Very different programmes but I loved them both. I also really enjoyed Steven Universe Future, and it probably would have been top if there were more of it. Last year I also watched Formula 1 with Izzy, which was a lot of fun.

24. Do you dislike anyone or anything now that you didn’t dislike this time last year?
There’s a certain virus that I’m not happy with that I didn’t know about in 2019. Most of the people I dislike are those who have been spreading the false news about the virus resulting in people not taking it seriously, refusing to wear masks when they can, and so on.

25. What was the best book you read?
Small Robots by Thomas Heasman-Hunt (based on the Twitter account @SmolRobots). A book about kind, awesome robots was exactly what I needed last year, and Sammie loved it as well.

26. What was your greatest media discovery?
Probably Hilda. I had to wait until I was emotionally ready for it, and kept taking breaks to process it, but it was awesome.

27. What did you want and get?
A festive bake from Greggs. A hug from Sammie on Christmas Eve. World of Warcraft Shadowlands. Penguins.

28. What did you want and not get?
A shower. Trips out. Izzy’s potatoes. A miracle cure.

29. What was your favourite film of this year?
Steven Universe the Movie. A great continuation of the telly programme. I may have cried.

30. What did you do on your birthday?
Um, I can’t remember. I think I slept most of it as I wasn’t well. It was during the period where I wasn’t keeping up with my diary as I was too overwhelmed.

31. What one thing would have made your year immeasurably more satisfying?
The Event not occurring.

32. How would you describe your personal fashion concept in 2020?
Same as previous years. I did get a super fluffy purple bed jacket that Izzy cut up the back for me to wear over my t-shirts/nighties when cold, and she did the same to my new penguin Christmas sweatshirt. I think I only wore something on my bottom half once, when going out on New Year’s Eve (I wore fleecy pyjama bottoms over my compression socks).

33. What kept you sane?
I’m not entirely sure I was sane 😛 Really though, Izzy, Sammie, friends, Bilbo and penguins.

34. Which celebrity/public figure did you fancy the most?
No-one new last year.

35. What political issue stirred you the most?
Probably Black Lives Matter. It shouldn’t be controversial, but racism.

36. Who do you miss?
Pretty much everyone except Izzy. Other people still exist, yes?

37. Who was the best new person you met?
Due to The Event, I didn’t meet anyone new last year except a nurse. She was nice, but I can’t even remember her name.

38. What was the best thing you ate?
Since Izzy didn’t make her potatoes, probably eggs. I love eggs.

39. Tell us a valuable life lesson you learned in 2020?
All those people who said it must be really nice to stay at home all the time, can’t deal with staying at home all the time. Also viruses can shut down the world.

40. A quote that sums up your year:
Stay home, stay safe.

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.