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.

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 😛

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 🙂

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 BlÃ¥haj (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.