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.
