A Perspective on COVID-19

Stuck at home because of a disease there’s no cure for? Out of work because leaving home is a bad idea? Struggling to manage school/uni/work from home? Missing spending time on friends? Feeling isolated? Mental health suffering?

These have, unexpectedly, become universal experiences over the last couple of months, and people everywhere are talking about “the new normal”. But here’s the catch: for me, and millions of others around the world who suffer from chronic illnesses and disabilities, this was already our experience of life. To us, this is nothing new. This is just normal.

Today is ME/CFS Awareness day. So I decided to use this rather unique opportunity to connect you all with part of what it means to live with this condition.

It’s hard, isn’t it? Hard to feel trapped? To feel isolated? Alone? To be unable to work, or at least work properly, because of circumstances outside of your control? I don’t envy you, having to adjust to this for the first time.

But at the same time, can I be horribly honest? I do envy you.

Because, you see, the sickness that’s keeping you trapped indoors has teams of people around the world working to find a cure, a vaccine. Governments are focused on finding ways to protect us from it, The sickness that keeps me indoors? No such thing. What research is being done is underfunded, and far too early in the process, despite that fact that ME has been recognised as a neurological disease by WHO for over 50 years.

And, eventually, it will be safe for you to leave your homes again. A vaccine will be discovered. A cure created. The curve will be squashed and life will return to normal. You will be able to return to work, or school, or uni. You’ll be able to go out to meet friends or do your shopping without weighing up whether or not it’s worth the risk to your health. I probably won’t.

And in the meantime, you have schools, unis, workplaces, governments, health services working around the clock to help you through this. I got none of that. I get none of that. People with disabilities and chronic illnesses have to jump through countless hoops to get the support we need, and it’s hard. It takes years.

And you don’t get used to it. Being sick doesn’t make it easy to be housebound, unable to study, work, or spend time with friends. Sure, you can adjust, you can arrange a life that works, but you’re still missing out on so much. And you know it.

We feel the loss of our health. We feel the loss of our dreams. We feel the loss of our friends. We feel the loss of our lives.

So, this ME/CFS Awareness Day, may I ask you to be aware? Be aware that there are people for whom “social distancing” and “self isolation” are just another day? And please, remember us when your life goes back to normal. Because ours won’t be changing.

Myalgic Encephalomyelitis is hard to say, but it’s harder to live with.

To Do When Housebound (tips from a chronically ill woman for those caught out by COVID-19)

Damn this pandemic has come out of no where and hit us all hard, hasn’t it? Even I’m feeling the effects of it, and it’s made approximately no difference to my lifestyle. But that tells me that healthy people, or at least, more able bodied people than me, must really be struggling.

So, I thought, why not duck in and talk about 10 things you can do at home with all this time you’ve suddenly got on your hands? And, hey, you’ve got one up on me: you’ve still got energy!

Have a structure in place

Look, I don’t expect you to have a rigid, minute-by-minute schedule in place for your day, but I have found it is good to have at the very least a loose structure for how your day will be spent. And make sure to switch things up a bit. It may seem like a good idea to get sucked into something for hours on end, but too much of that, for too many days at a time, can really wear on your mental health. So, if you can, aim to have a healthy mix of things you do each day. This will help keep things from becoming too tedious, and if you’re smart about it, may minimise some of the stir-craziness that comes from also being at home.

That project you’ve always wanted to do, but never had time for

Fortunately for us, a lot of places are still open for business online, which means that project you’ve putting off for “some day”? Now is the day. Spend some time planning, researching and putting in orders for whatever materials you need. It may take some time, but hey, you’ve got it now!

Read a book (or maybe two or three)

Seriously, I find very little more comforting than getting lost in a book when I need to leave behind the stressors of life. Is it escapism? Maybe, but I think we could all benefit for a little bit of escapist reading! Especially at the moment.

Pick up a new hobby

YouTube is a housebound person’s best friend. Want to learn how to cook? YouTube. Want to learn about dress history? YouTube. Want to know what to know why tumbleweeds tumble? YouTube (no, seriously, it’s on there!) What I’m saying is, it’s never been easier to pick up a new hobby, or learn a new skill, than it is now. Take advantage of that! And if you have kids, maybe you can try learning something together? I don’t know. I don’t have children.

Begin learning a new language

If you dedicate even just half an hour a day to learning a language that interests you, you’ll probably amaze yourself with how far you get. I can’t do that (yay brain fog!), but you probably can. So, why not give it a try? Whatever language it is, there are probably plenty of resources. YouTube, Skillshare and Duolingo are all good places to look.

Redecorate

Seriously, it doesn’t have to be a big paint job, but taking time to plan out a redecoration or rearrangement of your home or room, and then actually doing it, is a fun way to spend your time. Plus, it may force you to sort out that pile of rubbish you’ve been ignoring for the last two years. And, in the end, you get a nice, clean space that feels new and looks pretty.

Research!

I don’t mean academia level research for the purpose of writing a paper (although, if that floats your boat, you should definitely do it). But there is a wealth of information out there on a wide range of topics, most of which we don’t get time to explore when we’re running around between work and activities and all the other things that keep us busy. So, why not use this time to explore some of it? Who knows? You may even find something that really ignites your interest and passion.

Clean your house

I don’t know about you, but I found cleaning so easy to overlook when I was busy with other stuff. Now, I still can’t clean regularly, but you can. Take the time to properly scrub those floors, wash those windows and polish the furniture (or whatever cleaning entails for you). The physical activity will help, plus, you’ll get to live in a cleaner environment. And a cleaner environment is a considerably less stressful one.

Watch a TV show (or many)

Don’t be afraid to step outside your comfort zone! Try watching shows in other languages, watch that murder mystery, dive into sci-fi, try period drama. I don’t know. I’ve seen a lot of people complaining about needing new content. As someone who has spent four years housebound to varying degrees, I can assure you: we are not lacking in content. Just be willing to give stuff a try. You might surprise yourself. And you’d be amazed what you can learn from TV shows.

Organise video calls with your friends

Honestly, do it. The isolation is one of the hardest parts about being housebound, but at the moment everyone else is in the same boat. So make use of that! Don’t be afraid to organise a time to sit down with a friend (or group of friends) with some tea and coffee and spend time together over video call. Facebook Messenger, Zoom and Skype are all wonderful platforms you can do that on, and I, for one, am so grateful this tech is available.

So, there you have it! 10 things you can do at home to help keep yourself sane!