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 Blåhaj (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.

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