Over the past year and a half/two years, I’ve enjoyed a time of relatively good health. Especially when you compare it to the years of being predominantly housebound that happened before that. But that in no way means that I am better and no longer have ME/CFS. It is strange, but even many of my close friends struggle to remember that I am still sick. And that is because the healthier I become, the less visible my illness is.
People don’t notice my illness…
Whilst having better health, I have had people say to me things like, “Kat, you know non-sick people get tired too”, or “I kind of told myself you weren’t sick anymore”, and “I’m glad you are healthy now”. It is always strange to hear these sorts of comments. They show how well I can hide my illness and my symptoms. Or maybe it shows how little people notice when someone is ill.
These comments fail to recognise the effort that goes into ensuring I can do what I want during every outing. Every plan I make is made with my current level of health in mind. It is made with a complex energy calculation that I don’t vocalise. After nine years of being sick, this calculation is almost second nature to me. But without keeping my energy in mind, I would be unable to do the things I do in my life.
Of course, I do not always balance my energy expenditure well. When I don’t, I end up cancelling on people and events. From the outside, I think people assume that I have a cold or some other “muggle sickness”. In reality, it is just exhaustion and my usual ME/CFS symptoms that cause me to cancel. It is me coming face to face with the reality that I am still sick.
I am still sick…
The reality is that even when I am balancing my energy levels well, I am still sick. To go out and about, I spend most of my time at home in bed or caring for my body. I do this in ways that most people do not have to. Even at my busiest point last year, I spent one or two full days in bed just resting. Rest days are invisible to anyone who does not live with me. Because of that, it doesn’t even really cross people’s minds that when home, I am often in bed, resting.
Even when I am balancing my energy levels well, I get random intense pain and migraines that last weeks. I have just learnt how to go about my day with it – so my symptoms are primarily invisible. I might mention them, but it doesn’t stick in people’s minds because I don’t look like I am suffering.
Even when I am balancing my energy levels well, I still have POTS. That means that I have to sit down as often as possible. My blood still doesn’t circulate well, and I still have an exceptionally high heart rate. But again, this is something I have learnt to deal with, and so, except on rare occasions, it is in no way visible. In fact, I remember the first time, at a stand-up comedy gig, where it was visible. I did the fun POTS swooning thing, where there is not enough blood in your head. I had to sit down very quickly. The people around me were shocked. This confused me because I talk very literally about this symptom in my stand-up comedy!
I can still have relapses…
Even when I am balancing my energy levels well, I can be knocked down and set back by a simple cold. It takes me longer to recover from a standard cold or the flu (let alone COVID) than the average “healthy” person. Therefore, ideally, I keep my distance from contagious people and keep masking in public spaces.
Even when I am balancing my energy levels well, I am aware that overdoing things too much could set me back a long way. It has happened multiple times in my past, from working too much to stretching too much, to that one night where I drank too much tequila. So, because of my illness, I will never be able to be completely carefree, however healthy I seem.
What I am trying to say is that just because I look truly fantastic does not mean that I am not sick. What people often seem to forget, since let’s be honest, we’d rather not know, 95% of people don’t recover from ME/CFS. So if I do have a period where I have relative health, my illness is still there and I still have to regulate it. Even if people around me don’t come face to face with it as often as I do, I am still sick!
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