I don’t usually like revealing too much of my personal self on here, as such things make me feel vulnerable and I’m #certifiedshy. But here I go anyway, talking about myself!
Today is myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) awareness day, and, as Long Boi would say, it’s the malaise most pertinent to me. Not to be too painfully earnest about things, but there are so many problems in the world, and so much suffering — I am acutely aware of how lucky I am, and how I am still living a life that is far better than 99% of humanity have lived throughout history. But M.E. is what I struggle with in my own life, and what my own mother bravely fights against too (showing the strong genetic link). So I’m making M.E. visible on this day of awareness rather than hiding away as I usually do.
I’ve had M.E. for almost 22 years now, with ups and downs along the way (with the last few years proving particularly down). It’s the reason why I don’t create or post here as much as I would like. I often don’t have enough left in the tank for the creative pursuits I love so much after a week of work and all the other things I have to do to sustain this meat-suit o’ mine. (Often, too, I’m just not in the kind of humorous and creative frame of mind I need to be in — decades of chronic illness and associated stresses really aren’t great for the ol’ mental health. But I love sharing my silly creations with you all, and seeing your wonderfully unhinged comments and messages. So I must engage more! And I will!)
Despite the significant impact it has on the quality of life of millions across the world, M.E./CFS is underfunded and misunderstood, to say the least. There have been encouraging advances in our scientific understanding of the multiple mechanisms at play (from auto-immunity to mitochondrial dysfunction), and reams of researchers are truly doing the Lord’s work — so thank you! But it’s not enough, there needs to be more awareness. There are millions missing, millions of sufferers more severe than I am who aren’t able to write messages like this or communicate their story at all. They’re bedbound, living in darkness, unable to move. Their bodies cannot cope with external stimulation, so they have to limit this as much as possible.
We need to help them. The answers are out there. If you look at the amount of money that has actually been spent on research into this disease over the decades, it’s a laughable pittance. We’ve barely scratched the surface, and this makes me feel confident that the answers are out there if we would only spend more time actually looking for them. Millions of people could have their lives transformed.
Including me (here I go again, talking about myself). There are many M.E. sufferers who, like me and my mother, can still engage in society to some extent (on some days, at least), but have to spend many hours resting to recover from the amount of work or socialising they are able to rally themselves for (like a repeated cycle of hangovers, but without the fun part). We are able to present an outward appearance of health for some hours, but then have to retreat to our beds unseen for even more. The best way I’ve found to describe this strange and befuddling disease is that it’s as if I have a battery which runs out of charge more quickly than usual, and never charges up to 100% even on my best days. I wake up each day with tiredness already ingrained in me, and experience frequent headaches and “brain fog”. Luckily for me, I have still been able to go to university and work (well, only part-time for the past few years, but I really do have a lot to be thankful for). I was able to be more active in the past, and in my late teenage years and early twenties there were some glorious days I actually felt normal. But I’ve declined since then, and even more since around 2020 (thanks, Covid!). Nowadays, due to orthostatic intolerance, I have to take lots of sitting down breaks if I have to spend time on my feet.
I find it hard to dismiss thoughts of my lost potential, and the person I could have been — how much happier, more successful, less grumpy, more physically RIPPED could I have been?! Would I have been the heir to Messi and graced football pitches around the world with an astonishing display of athleticism, skill, and sheer footballing elegance? I’ll never know (it’s a no). But would I have written those novels I’ve always wanted to? Would I have been a better person overall without this mental and physical weight weighing me down? More fulfilled in my own self, and more present for my friends, family, and partner? More able to actually help those in need in a meaningful way? I think so. I know I’d definitely be better off in a financial sense — working part-time (in this economy!) is no joke! Maybe I have unrealistic expectations of what a 100% healthy life could be like. I know I should I be grateful for what I have, especially in light of all those who suffer each and every day across the world, more than I could possibly bear to imagine. But I’m human. I’m weak. I can’t help but be selfish sometimes, and grieve the death of the me I was not allowed to become.
The constant fear, too, is that I will lose the self that exists even in this more limited state. That I will drastically decline if I do too much and end up entirely bedbound, as this is what can happen with this condition. We need to save the millions missing who have to live like that. If you want to learn more, there are many great charities and organisations out there — such as the ME Association and Action for M.E. in the UK, for example.
So yeah, that’s it really. I’ll just let this strangely revealing post taper off here. I’m aiming to create and share more things soon, so keep your eyes peeled! I really love making these silly drawings and stories, and interacting with the wonderful community I’ve found here. So thank you. I hope you’re well — wherever you are, and whatever “well” might mean for you.
All the best,
Andrew
The Oogazoid Library 