Hey lovely loves,
Just a quick one today. As it's one year since I had a piece in the Telegraph online, which was a reaction to scientists finding similarities between hibernation animals and ME, I thought I'd share what it looked like before the editors changed things around a bit.
Obviously, I prefer my version ;)
My first thought on being compared to a hibernating animal was one of amusement, because my ME certainly makes me feel like a bear with a sore head. I was less pleased when I learned that the specific animal in question was a worm, but the comparison of the Dauer state deeply resonated with me. The Dauer state basically allows these worms to survive and exist… but that’s about it. I can’t tell you how horribly close that comes to my life.
Whenever evidence like this come out, there’s always a mixed reaction within the ME/CFS commumnity.
Firstly, there’s a strong desire to run around with the article shouting, “I told you so!” at the top of our voices, but, as we’re obviously too sick to do that, we have to settle with social media shares and extremely small, non-tiring fist pumps.
Secondly, there’s a feeling of relief. Finally, we might be believed and people might start to understand us more. It’s so, so tiring constantly having to try and explain or prove to people that what we have is a real, physical disease. Of course, mental illnesses are real too, but, as you can imagine, it would be beyond frustrating if you had a broken leg and got sent to a psychologist, or told that it was “all in your head”.
Finally, there’s fear. It sounds odd, but there’s always the fear that, despite evidence to suggest otherwise, people aren’t going to believe that you’re ill. There’s still massive stigma around ME/CFS, both publicly and in the medical field, and once you’ve been at the recieving end of that, you never, ever forget it.
In some ways, being a compared to a worm is accurate, because, when people don't believe in my illness, that's exactly how they make me feel.
I had been working as a freelance illustrator as well as part-time in retail to support study for my Master’s degree when I got sick, and my working hours averaged around 75 hours a week. It rankles when people suggest ME/CFS isn’t a real illness, and that those who suffer from it are just malingerers or attention seekers, because I know very well that’s not true. I worked so hard for my life, I loved it, and it got taken away from me. My life now? It’s not what those doubters would think.
I’m 29 and I live with my retired parents, who are my carers. I’ve had ME/CFS for four years, and the last two of those I’ve spent completely housebound. I can’t work, watch TV, or listen to the radio, and I’m only able to see one of my friends once a month, for around half an hour. I get pains, and brain fog, and so many other symptoms, along with the constant, relentless exhaustion.
Two thirds of my day is spent resting in silence, focusing on my breathing, and relaxing my muscles as much as possible, so that I can function for the other third. Hibernation is a pretty apt term.
Every little pleasure and activity I’ve managed to fit into my routine I have fought tooth and nail for by using this resting regime, eating well (thanks to my parents, who prepare all my food), and waiting, little by little, for my energy levels to improve.
I tried therapy, and putting “mind over matter”, but not treating my ME/CFS as a physical illness is what ultimately led me to become housebound, and it’s only through treating my illness as a physical illness that I’ve seen any improvement at all.
Every tiny activity has consequences now (even writing this!) but over time I’ve come to terms with that, and found ways to be involved in the world without being physically present.
I write a blog to keep my friends updated and give advice to fellow sufferers and their families, and I even made a tiny version of myself in doll form to go to events like weddings and birthdays in my stead.
It’s a difficult life, but I’m still fighting, and it’s always fantastic when any evidence is uncovered to support ME/CFS as a physical illness. Especially when I get to say… I told you so!