A Look at COVID-19 Through the Eyes of ME/CFS

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by Jody Smith​

I have been self-isolating for over two weeks now. Not because of COVID-19. At least, not at first. Like many of you, I spend a great deal of time in my house because of ME/CFS. I was housebound due to a resurgence of ME/CFS symptoms since the beginning of March. And like many of you, I have hated being forced to stay at home and away from the outside world for extended periods of time. In my case, this has been going on for years.

Facing great uncertainty

Now, though there is an odd benefit to this experience of having been sidelined for such long stretches. Unlike many normally healthy people being faced with self-isolating, I know how to do this. I know that it is frustrating and limiting but oh yes! I know that it can be done.

I think with sympathy about those whose finances are in jeopardy, who aren’t sure how they will manage, whose usual support systems are not available to them right now. I sympathize intensely because I have had much experience with this type of loss.

My household has had to start from ruins more times than I care to count after health catastrophes hit us where it hurt. It is terrifying. It is enormously challenging. There are no guarantees. The cost of things loom in giant numbers, haunting as the monsters kids used to fear under their beds or in their closets. But now these monsters are real.

How do we pay the bills? How do we get food? How do we care for our children?

Monumental dread. I know what that’s like and nobody should have to live this way.

But the thing is, people do. People have in the past and will in the future. It can be done. It can be handled. Each person, each household must find their own solutions. They must learn what things they thought were essentials can be lived without. They must learn to do without. Ghastly. But it is doable. I know, we’ve done it. Repeatedly.

At my house in Ontario, Canada, we are pretty safe. My husband, my son and myself have all had health issues that have limited us for years. We don’t go out much. A good deal of our life is a virtual life online. Thank goodness for the Internet!

How to maintain communication in this virtual life

I get it. You’ve been barreling along, juggling the many responsibilities in your life. Maybe a job, or multiple jobs, maybe a marriage, maybe children. Maybe a new business, satisfying hobbies, communities to which you belong. And suddenly, life as you knew it is over.

If you never had much need or time for your computer, if you’ve never had reason to explore what’s available online, it’s time to start! Life can be more than what you see inside your house. Make the most of your Internet access. And if you don’t actually have it yourself, get it.

So much has been made free and accessible now because of self-isolation. Make the Internet your new and expanded home. There are so many possibilities to choose from.

You can join forums, and spread out on various types of social media. Keep up with people you care about via email. Start family threads, share photos and videos online. Tap into the free music available. Keep up on the news — but don’t overdo it! Too much can be depressing. Balance that with some cat memes or something.

The Internet allowed me to make a living when working outside my home was impossible. I worked from my living room for seven years, writing and editing. Online relationships on forums and social media were full and satisfying. Work was interesting and I learned so much.

I have been cut off from the rest of the world due to illness both without internet access and later with it, and I’ll tell you there is no comparison.

Living the virtual life has its drawbacks and they are many — but believe me, it’s so much better than having nothing but your four walls … and if you’re lucky enough to have friends or family members there with you … that’s all you have. Countless people have been completely alone before the advent of the Internet … that is mighty lonely, Jack.

It’s good to see support and encouragement, information and offers of assistance blooming from every corner of the world as people come together in the face of the coronavirus. I’ve noticed that this recognition and activation is so very different from what I and my fellow sufferers of ME/CFS have been greeted with in the past. Not just recently but, well, forever.

But not so now. I’ve seen that within a matter of days in some areas, and a matter of weeks in others, people are in shock, saying “This is so hard!”

And I sit here in my housecoat these past couple of weeks with my ME/CFS symptoms flared up yet again, and say — A couple of days? A couple of weeks? Piece of cake. I could do that in my sleep.

And have. I’ve lived this way for months and years off and on. But you know, having had this experience has also created in me a great sympathy because I know what it’s like.

If you are healthy and not sure how to do this thing day to day … consider talking to someone you know who has chronic health conditions. You might be surprised at just how varied and effective their coping methods may be.

I have seen friends with ME/CFS post on social media, helpful hints and health suggestions for their global fellows who are being hit with this type of limitation for the first time and who are stupefied and stunned by it all.

Society in flux

I’ve had some time to think about what’s been going on around the world. While my household is pretty self-contained and well-versed in self-isolation and not needing much of the outside world … knowing that this outside world is not operating with its usual smoothness and dependability is unsettling.

While we have next to no social life most of the time, we have always known that as long as one of us can go to the grocery store what we want is always there. If we need something from the hardware store, or a doctor’s appointment, we used to be able to take care of those things.

Now those things are not certain. Still First World problems thus far, but we are aware that … everything is capable of coming to a stop. It’s looking good so far where we are, but we know that this could change, and change quickly. And it brings home for me a new appreciation for that outside world that we have always been able to tap into till recently.

One thing that has changed in my life because of the coronavirus is that I can’t visit my 91-year-old father in his nursing home. It is only a six-minute drive from my house, and I have gone there several times a week for a few years now. But they’re in lock-down and nobody can go visit him.

We had to cancel a party for some of our Birthday Boys this weekend for safety sake. Our daughter-in-law couldn’t have joined us anyway because our son has been exposed to the virus and they are both working from home and counting the days, wondering if they will develop symptoms.

Jobs and children

Much of my family is spread out, half a continent away. We’ve always stayed in touch online, and are especially doing so now. I worry about all of them. Will the ones still working be able to continue? Should they? But if they must leave their jobs, financial concerns rise up.

What about my grandchildren? School has been cancelled for all of them across the country. Things began to come to a head here in Canada around the time of the normally scheduled March Break for all of them. This has given each family a few days to make major decisions and household adjustments. For that I’m grateful.

But there’s now child care to consider. Daycare facilities are now closed down. Who stays home with the kids? What’s to be done? Each family with children and working parents faces difficult challenges.

So even while we are relatively safe here at home, my extended heart, which is my children and grandchildren and my father, my brothers and their families … there’s a lot of turmoil and uncertainty.

We’re all in this together

I hope you weren’t looking for any great words of wisdom from me here. You won’t have found any. I’m just looking around, musing on what I see. Sharing with my fellow shut-ins. And for the first time, this includes more than the chronically ill community. Now it’s everybody in the world.

When I had to start living this way a couple of decades ago that was not the case. I was alone, and very few people were interested. But I was still able to do it. You will too.

If you have to be part of global self-isolation, there has never been a better time for it in mankind’s history. And the entire world is in this with you, determined to meet the needs of those in isolation and bring back as much normalcy as possible, as quickly as possible.

How are you doing in this time of COVID-19?

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