2020 In 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 youโ€™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 Yearโ€™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 ๐Ÿ˜›

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 youโ€™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 youโ€™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 didnโ€™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 ๐Ÿ˜› 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.

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 ๐Ÿ˜›

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 ๐Ÿ˜›

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 ๐Ÿ˜›

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.

10 Years

Today is 10 years since I started this blog. This means that yesterday Izzy and I celebrated our 10th wedding anniversary. We had a couple of hours of cuddling in my bed while watching cricket, amazing food from our local Korean chicken place, and then I ended up sleeping the rest of the day because I still have severe ME and cuddling is exhausting ๐Ÿ˜›

The last 10 years have been very different from what we’d have predicted. We didn’t know how ill I’d get, or even that I’d still be ill by now. We moved from Crawcrook (a lovely village) to Gateshead (a decent sized town) once I could no longer manage stairs and needed to be closer to the hospitals. I went from mostly walking with crutches to full time wheelchair use and then nearly completely bed bound and unable to sit upright. Izzy went from being inside all the time to going to a day service, then volunteering for both the day service and a local games developer, then in March getting a full time job with the games company (just in time for lockdown :P). She also took up running and turned out to be pretty good at it. We also both realised we were trans. Over the last few years Izzy has got to know Sammie really well, and now Sammie trusts her when I’m not available to help out, which makes me very happy.

Some things are the same. We both still play World of Warcraft and are obsessed with computers. Penguins are a massive part of our lives, and most of our belongings are purple. We still very much like cuddling each other, and get frustrated when I’m too ill. We both like talking and listening to each other’s special interests, and just being in together while doing our own things.

The original plan was as we had a very small wedding (5 guests), we were going to have a blessing and bigger party for family and friends for our 1st anniversary. As I got more ill, that was postponed until the 5th, then the 10th. At this point, we have no idea when I’ll be well enough, so we’ll worry about it when I’m able to actually manage one, whenever that’ll be. We definitely don’t regret our wedding, especially since we weren’t to know I was going to get so much more ill so quickly. In the meantime, we just spend what time we can together and hope one day I’ll be well enough to see people again ๐Ÿ™‚

As for how we’re doing, we’re mostly okay. Still hiding from the world, so not having anyone in and Izzy’s still working from home. I haven’t blogged much as I was badly affected by Mel Baggs’ death, mostly because it shouldn’t have happened. We hadn’t spoken recently, but if it weren’t for hir and Laura Tisoncik creating the Autism Liberation Front in Second Life I wouldn’t have met Izzy, and I’m not sure I’d even be here without them. The world is a much poorer place without Mel, but hir writing and legacy will remain.

Living with Severe ME during the COVID-19 Pandemic

This week is ME Awareness week. I missed ME Awareness Day (12th May) by sleeping through most of it, but that’s not unusual for me. This year is different to previous years as at the moment most people are under various states of lockdown due to the Covid-19 Pandemic, which I’ve taken to calling The Event due to feeling like I live in a young adult novel. This means that most people are experiencing some level of isolation, though how much depends on where they are, who they live with and what they do.

I consider myself to be very lucky. My ME is pretty stable at the moment, and I’m able to do a lot for someone at the more severe end of the spectrum. Though I can’t move much, I am able to tolerate a decent amount of light, sound, movement (of others and on screens) and can even concentrate for periods of time, so my ability to do things I enjoy has massively increased compared to what it was when I was more ill. I’ve also discovered that large amounts of caffeine have a positive impact on my condition, somehow lowering my heart rate so I can sit up in bed more, and letting me spend more time on my computer. This means I’m also able to spend more time talking to Sammie and Izzy, and I’m hoping to have more conversations with friends if I can be awake during the day.

Another way I’m very lucky is that Izzy has a full time job that can be done from home. This means we’ve been able to reduce my risk of becoming ill by cancelling the care calls and cleaner. Izzy only goes out to pick up prescriptions, get top up groceries, and running for exercise when no-one else is around. Most other stuff we get delivered (tip: Iceland seems to have next day delivery slots for those who are vulnerable but not on the government’s shielding list, and last time we only had a couple of substitutions).

The good parts about having Izzy be here all the time include being able to have my urgent care needs dealt with quickly, rather than having to wait a couple of hours for a care worker to arrive or half an hour for Izzy to get home from work (depending on how urgent it is). I can also do things that require someone to help me set up like going on my computer when I’m wanting to, instead of having to wait. This has increased my autonomy which is great. Not being home alone during the day has massively reduced my anxiety and paranoia, and I don’t feel as vulnerable. This has also probably contributed to me having more good days (for me) than I was previously having, which means I’ve been able to do much more. I also feel more free to sleep when I need to rather than trying to be awake for certain times when the care workers are here, which has also improved my health.

Izzy’s also able to spend her lunch break with me if I’m awake then, which is awesome for us both (though sometimes we get talking and she’s late to going back to work – whoops). Izzy’s boss is very understanding if I need her for any reason, and I know won’t ask her to go back to the office until it’s safe for both of us.

The not so good parts basically boil down to Izzy trying to do two full time jobs on top of her own disabilities (autism and possible ADHD). Although she’s learnt how to brush my teeth, us both having terrible memories means it doesn’t happen anywhere near as often as it should do. After work she’s exhausted, so she can’t do bigger tasks like changing my bedding or washing my hair, so we intend to do them at the weekend, which I then sleep through. Some nights I have to wake her up multiple times, which makes her even more tired the next day. I can’t force myself on to a “normal” sleeping pattern as it makes my health go rapidly downhill, which would increase how much Izzy will need to do (such as feeding me rather than just giving me my food, rolling me over every couple of hours, working out what I need when I can’t communicate verbally or typed, checking for bed sores and trying to make me comfortable).

Not having the care workers or the cleaner means she’s not really getting a break. She’s always on call. I don’t know what the flat currently looks like, but considering Izzy won’t take photos to let me see, it’s probably not great. My brother offered to help declutter just before The Event started, which would have helped loads, but he had a cold and by the time he was better lockdown had started and we’d put ourselves in isolation. I try and help with reminders, but my memory issues are even worse than hers so that’s not been terribly effective (and setting reminders on my phone doesn’t work great when I sleep randomly). At some point we’ll have to consider when to take the risk to let the care workers come back so she doesn’t completely burn out, but for now she feels like she’s managing and with me doing good for me overall I’m able to be left for longer, though she’s still on call.

So we’re coping, though things aren’t perfect. I am wearing soft caps to cover my unwashed hair, Izzy’s wearing most of my clothes since I only change tops about once a week (though to be fair, that’s not really a new thing :P). Food gets made and eaten, sometimes even more than once a day. I get to go on my computer a few times a week and play Minecraft with Bilbo friends and work on the Bilbcraft wiki I created (though Izzy and Ellen did the hard bits as my brain no work well now). Socialising with Sammie often takes place in Ellen’s streams, which is a lot of fun and relaxing. My pain levels are manageable, I still spasm and jerk a lot but no more than usual and mostly when I move. I spend a lot of time alone in my room, but I have the company of my penguins and my new Blรฅhaj (blue shark) that also works as a great cushion for Izzy when she’s lying at the bottom of my bed for chats. I’m used to this.

One of the weirdest parts of living through The Event is seeing how other people are responding. Before The Event, I often had people tell me they wish they could stay at home all day and not have to go to work. Now they’ve had it forced on them, they’ve discovered it’s not all that great. Yes, it’s nice to be able to watch TV shows and play computer games, but it’s not the same as going out and meeting up with people. And then you add chronic illness to it, and even those can be too much. Many people with Severe ME are too ill to watch any television or play any games, and those with Very Severe ME are often too ill to even move in bed, speak or eat, and having someone in the room makes them even more ill.

I am worried about those who get Covid-19 and end up ill for a long time. There’s such a pressure to push through and get back to normal, and it was trying to do that with swine flu that triggered my ME. Even the prime minister set a bad example, as it was obvious in a photo that was meant to be showing him as fine that he was trying to hide how ill he felt. Especially when seriously ill, it’s important to get enough rest to enable the body to recover properly. It wouldn’t surprise me if some people who get the virus end up with ME in the long term, and right now the NHS advice for graded exercise therapy and cognitive behavioural therapy is very dangerous. I have many friends whose ME became a lot more severe due to those “treatments”. Pacing and working within your limits is so important.

One advantage of The Event is that things that were previously inaccessible to those who are housebound have now been made accessible, with online meetings and streaming becoming the norm. It is frustrating that these became available only when those who are not disabled needed them, not when they were originally asked for by disabled people, but at least they’re available now.

As having Severe ME goes, I’m in an incredibly fortunate position. I still want proper treatment and a cure, but I’m doing so much better than I was a few years ago, even if I’ve not left my bedroom since December. The symptoms I have suck but I’m able to distract myself from the worst of them. I’m thinking of those who don’t have that option. One day it’ll be better.