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.

Small Change

Most things are fine here. We’re getting used to the current situation, I’m managing to do things I like most days so long as I don’t move too much, and we’re managing to get food deliveries even if it’s not exactly what we ordered. So that’s good.

There has been a little change though. My lovely spouse has come out on Twitter as a trans woman. Her new name is Izzy. I’ve known since last year, but due to how horribly transphobic the UK is at the moment, she’s been terrified of coming out in public. I’m really proud of her getting the courage to do so, and so far the response has been really positive. Sammie now calls her Mum2 (I’m Mum1) which makes Izzy smile every time she hears it. It also means the only clothes of mine that are safe are my shoes, as I’m a size 9 and she’s a size 6. When I bought it, I thought my Trans and Tired top would be safe 😛

There were early signs I noticed. When I originally met her on Second Life, Johan Yugen was a female avatar. She claimed that it was just because there was a better selection of purple clothing, but it wasn’t that hard to resize clothes for a male avatar. She also had a tendency to go for female characters in video games when given the chance. There was also a lot of denial – being too afraid to by hair bobbles when she was growing her hair out (though was fine buying menstrual products for me) and when I jokingly suggested she wear one of my dresses since she was already stealing most of my tops, she had a rather extreme negative reaction. These and other things meant I suspected that she wasn’t a cis man, but since it’s a very personal topic (and seeing her reaction to the suggestion of wearing a dress) I kept that to myself.

We’re lucky to know lots of different trans people, many of which have come out since we first got to know them. As I’m also trans (being genderless) trans issues were a common topic of conversation, and we were talking about them when she told me she wasn’t sure she was a cis man. It didn’t take long after that for her to say that is a woman. The hardest part after that was keeping it a secret until she was ready to come out publicly. Although it was relatively easy for me to continue calling her Johan in public thanks to her Second Life avatar being female, it got harder and harder to continue using he/him pronouns and so a bit ago, with her approval, I swapped to they/them instead, including on this blog. Now she is out, I’ll be sticking with she/her.

She’s still very early on in her transition journey. She went on the waiting list of the local gender clinic a few months ago, but even before this pandemic the average waiting time for a first appointment was years. Now she has a paid job we were going to look into going privately, but that’s now on hold because of the virus. I’m just glad she’s figured it out, and the grin on her face whenever I call her Izzy or refer to her as Sammie’s mum is worth it.

Things Feel Weird

I’m doing pretty good for me. Having Johan home all the time means no waiting for urgent care and shorter waits for less urgent care, which means I’m physically doing a bit better. Not being alone in the flat most of the day is great for my anxiety, even though I’m still spending most of my time alone. Unlike most people, I am used to being unable to go out or see friends and family, so a few more months isn’t going to make much of a difference (I last got out of bed on the 29th of December).

Being that little bit better means I can do my favourite things, like play video games and read a bit. I’ve managed to watch Steven Universe The Movie, and the first two episodes of Steven Universe Future. I’ve caught up with YouTube videos I have full notifications turned on for. I’ve had video chats with Sammie, voice chats with Johan and even was in a group chat with other This is True supporters (that last one did mean I slept for most of the next two days, but was fun). I even got my loom bands out and made a strap for when I use utensils and things so they don’t go flying when I spasm (looms hold things together when they get chucked, luckily).

We’ve also had many friends and organisations check we’re okay and offered to help if we needed it. So far it’s fine. Between deliveries and our local shop, we’ve been able to get everything we’ve needed except chicken, and that we can work around. I’m very grateful we’re not forgotten and hope those who do need the help get it.

It feels really weird to be doing well during a global crisis. The reason Johan is home is because people are becoming ill and dying from a virus with no known treatment. People are losing jobs and worse. I saw on Twitter someone being told that instead of getting personal protective equipment for her PAs (impossible to source as a single person right now) she should go in a care home, despite having been exposed to someone with COVID-19 symptoms. Care homes are terrible places for disabled people even in the best of times. This is wrong, just for the need of some face masks.

There are still some struggles. As we’re doing a modified version of shielding for me (because full shielding is impossible if you need personal care and I’m technically not in the extremely vulnerable group, just in the likely to die if there’s not enough medical care available group) the lack of skin contact hand holds (we hold hands while Johan is wearing gloves instead) and hugs is hard. As is knowing I’ll not be seeing Sammie or friends in person for a while, after having plans to do so. Johan is starting to feel cooped up, so we’re trying to figure out the safest way for them to go out (the main risk being our neighbour). It’s also a bit frustrating being well enough to go out for the first time in months but not being able to for reasons outside of my control.

I’m in the middle of setting up some routines based on our current circumstances, as my previous ones were based around my care calls, which we’ve now cancelled (along with the cleaner). I’ve got a list of options for things to do so I spend less time trying to figure them out. I’m working on the best way to prompt Johan to do tasks now their routine has also been messed up, and to replace the prompts from the carers and the cleaner (the better care workers would let us know if things needed doing which helped).

One problem we’ve yet to solve is Johan getting overwhelmed if I ask for two things at once, even if I give an order to do them in. I need to do so as if I don’t, I forget the second thing while the first is being done, and Johan gets frustrated when I realise again 10 minutes or so after they’ve sat back down. I also forget it if I try to type it. I know Johan finds my memory problems one of the hardest parts of my illness to cope with, and this situation makes it really obvious.

I’m frustrated that I can’t be the carer that Johan needs. Johan is frustrated that they struggle with providing some of my care. We’re still doing mostly fine, and not having to travel to work (or volunteering) means Johan has been able to cook more which I appreciate. I just don’t know how I’m meant to feel, and that feels weird.

Self Isolation Update

So it didn’t take long after my last post for things to change. Johan’s races were cancelled, and we decided that putting me in a care home was not a good idea considering it would increase the risks to me and the other residents. Johan is also now working from home, as is everyone else in the office.

Johan still took the days booked off as holiday last week, which was Wednesday and Friday. On Wednesday we spent time together in my room, and they opened my curtain and window for me so I could get some fresh air (I originally wanted to go onto the ramp but we decided that wasn’t the best plan). Unfortunately I forgot to ask to have the curtain put up again, and the extra light in my bedroom caused me to feel horrendous over the weekend. It’s back up and I’m doing a bit better now.

Friday was originally meant to be Johan goes to Kielder day. Instead, it was Johan plays Doom Eternal day. I did get to see them occasionally, but mostly I heard lots of clicky noises from the living room 😛 At some point we want to play the board game Pandemic, as I’ve had it for ages but not opened it yet.

Johan working from home is weird. Having them in the living room all day but not being able to just bug them about little things is weird, especially as they’re usually in a voice or video chat with colleagues so I can’t just yell through. We’re using the same system as when they were in the office, which is using WhatsApp for non important stuff (like funny pictures or tweets I find) and Google Hangouts for urgent stuff (I need some care doing). If it’s super duper important, I’ll yell anyway as the rest of the team knows that Johan is my carer, but hopefully it won’t come to that. (If I can’t yell, then I can use the Google Nest Minis to broadcast a message into the living room, which is also part of my wake up Johan plan on a night time.)

At the moment we still have the care workers still coming in. On top of the normal hand washing and gloves, they’re also wearing aprons now. We’ve told the agency that if/when they start having staffing problems, just let us know and they can cut our calls as Johan is here. It will make things harder for us but a lot of the clients have no-one so they’ll need to prioritise. We’re also considering if it might be safest to cancel the calls anyway, to reduce the chance of me catching the virus from them. We’ll need to check with the council for how that will work with direct payments but we’re not there yet.

Sammie is happy that there’s no school and her exams are cancelled. She was really stressed out about her GCSEs and I was getting worried about her. If her teacher’s assessment is close to her predicted grades she’s got no problems when it comes to doing the college course she’s interested in. We don’t know if her school will be providing any work as they’ve already done the curriculum and were just revising and getting prepared for the exams, but if not then she’s got projects she wants to work on. We’re also playing Minecraft together when we get the chance, and I believe she’s got an island to develop for her animal friends.

The hardest part of being in self isolation is that I won’t get to see Sammie in person for the foreseeable future. We’ll be video chatting as normal, but it’s not the same. This is especially hard as the last time she came over I was pretty ill and we couldn’t have any hugs. I’m also no longer having hugs or hand holds with Johan, and we’re reducing physical contact to the minimum. We go on voice chat when I’m on my puter and they’re not working so we can chat without being in the same room.

Johan is still going out for prescriptions and food, but otherwise is staying in. We did manage to get some baby wipes from Aldi, and I found an unopened bottle of alcohol based hand sanitiser that has technically expired but should still be okay according to what I’ve read online, so I’m now using that.

One of the reasons we’re being so strict about physical contact with me is that the NICE guidelines for critical care with COVID-19 came out. They will be using the Clinical Frailty Scale (pdf) to help inform when critical care is appropriate, as for those with a score of five or higher “there is uncertainty regarding the likely benefit of critical care organ support”. My score is seven or severely frail . Now this doesn’t mean that if I need critical care I definitely won’t get it, but as doctors already massively underestimate my quality of life (I’ve had many that don’t believe me when I say I’m not depressed among other things) and there is likely to be a shortage of ventilators, there’s a good chance that if I get that ill, I’ll be placed on palliative care instead.

As well as trying to avoid me getting ill at all, I’ll also be updating my emergency information sheet to state I want all life saving measures to be taken if required, and make sure that those who might be asked know my wishes. I still think the main risk is less the virus itself and it making my ME worse, as I’ve ended up in hospital before when unable to swallow and it would be even harder now. Unfortunately a couple of online friends have already come down with suspected COVID-19, one of whom is still in hospital. I really hope they’ll be okay. It’s so important for people to stay at home unless necessary, but some people haven’t got that yet.

So on to better stuff. Other than the payback from sensory overload caused by not having my curtain up for a couple of days, I’ve been doing pretty well for me. Lots of computer time, catching up with emails, chatting to Sammie and Johan. I’ve also been looking at the positives that are coming out of this. Everything from the mutual aid groups, people putting rainbows in their windows for kids to spot when they’re out on walks, individuals helping out those in need, and even companies giving free drinks to those who have to work.

For this week, I’m hoping to play more World of Warcraft and Minecraft, maybe read a book, and possibly watch the Steven Universe film. I’m also planning on lots of sleep and rest to keep myself as well as possible, doing my physiotherapy, and chatting to Sammie and Johan. I’ll be on Twitter so I can see penguin and cat pictures and videos. I’m going to set up a routine based around Johan working, especially since I seem to be awake during the day most of the time at the moment. Things may be uncertain right now, but there is still good out there.