One thousand days in bed. It sounds like a title of a children’s storybook, something with connotations of cosiness and contentment and sleepy smiles, maybe even a fairytale. But for me? Well, it’s my reality, and I have to admit it feels a thousand miles away from any fairytale I’ve ever read. Maybe it would be more appropriate to call this ‘One Thousand Stolen Days’ — that feels a little closer to the truth.
I’m a 19 year old living in the South West of England, I live at home with my family, I have a cat who sleeps in my bed and a dog who’s only interested in my food, I have incredible friends who make me laugh and I cry at videos of dogs on the internet far too regularly. From that simplistic description I sound much like most 19 year olds, and in a lot respects I am, but there’s one big aspect of my life that differentiates me from my peers — I am confined to my bed, and have spent one thousand consecutive days lying here in it.
While other 19 year olds have spent the past thousand days studying, applying for jobs, going on dates, visiting different countries, meeting new people, working shifts, falling in love (and out of it again), visiting newborn family members, attending weddings (and funerals), going clubbing on Saturday nights, kissing strangers, swimming in the sea, and making so many different memories, I have been lying here, living my life in a two metres squared area. And the worst thing? No-one knows how long this will continue — there’s a chance I could spend the next thousand days lying here too, because the illness I suffer from is so poorly understood, funded, and researched, so there is no treatment to offer me, and no evidence to say how long I may have to lie here.
I suffer from several poorly understood illnesses, but the one that is believed to be the most significant in my disability is Myalgic Encephalomyelitis, sometimes referred to as Chronic Fatigue Syndrome — a name I personally reject since that name makes you think I’m just tired, or maybe, at most, exhausted, when in reality fatigue is just one of the 60+ recognised symptoms of M.E, and it can be so much more debilitating than anyone who just heard the name or googled it would realise. Symptoms affect all parts of the body and vary largely, but some of the most common are: fatigue, chronic pain, weakness, migraines, insomnia or hypersomnia, dizziness, nausea, cognitive dysfunction (negatively affecting things like memory, information processing, problem solving), muscle spasms, and difficulty maintaining homeostasis. Of the 250,000 people living with ME in the UK, 25% are classed as severely affected — meaning they experience a level of disability so profound that they are mostly housebound or bedbound, and a small minority are so unwell that they cannot talk, eat or even breathe by themselves, relying on feeding tubes and oxygen masks.
I am one of those 62,500 severely affected people in the UK, and I have experienced all levels of disability ranging from very mild to being spoon-fed, needing assistance to get changed and wash, and tolerating little more activity than listening to an audiobook most days. I have been lucky enough to see small but continual improvements over the last year, allowing me to get to a point where writing this article is possible — an achievement in itself — but I’m still confined to my bed, unless you count getting to the bathroom in my wheelchair as an ‘outing’.
“I bet they still go out sometimes and are just being melodramatic”, “surely they leave to go to the doctors?”, “I’m sure if something important enough came up they’d find a way to get there” — all things I’m 99% sure people have questioned, even if only in their heads, and who could blame them? I certainly don’t. The idea of someone being so unwell that they can’t get out, even in a wheelchair, is something that most people aren’t even aware is possible, and if they are, they probably think that only happens to those who are terminally ill. I probably would have questioned my story too. But no — I don’t leave my house at all; I can’t attend doctors appointments so doctors and physiotherapists and anyone else who wants to see me comes to my house; and no, my nan could be dying and even then there would be no way for me to visit her to say goodbye, a possibility that scares me rather a lot if I’m honest. The last time I left my house under my own steam was November 4th 2014: it was a 15 minute doctor’s appointment, a truly enthralling last outing. Since then, the only time I’ve left my house has been to be admitted to hospital for 5 days back in June 2015, a trip that required a bed in an ambulance to get me there, as well as numerous other special arrangements, and still resulted a terrifying decline in my health. Even most of my relatives don’t fully grasp the severity of my illness, because if kids with terminal cancer can make it to Disney world, why can’t I make it just down the road?
The thing is, people like me don’t get any press, largely because no-one is interested in our story because it’s not one that has a neat, inspiring ending; nor is it one that involves tumultuous ups and downs of surgeries and intensive therapies and lots of dramatic events. No-one tells the stories of those, like myself, who are too unwell to attend interviews or go on TV; and trying to reach press from your bed, like I am with this article, is an exhausting task in itself, one that the most severely affected would never even be able to consider. It becomes a vicious cycle: most people aren’t even aware that people living like me exist, and people like me aren’t well enough to fight to get our stories out there, so no one is even aware that we need help and funding and therefore things continue as they are; a situation that’s very discouraging when you’re watching years of your life disappear at the hands of this illness.
ME isn’t exciting or frequently dramatic, but it is insidious, and it is stealing people’s lives, mine just one of them, and sufferers do deserve to be heard, to have our condition researched, to have a hope that someday there will be treatments, and we will be able to regain control of our lives.
Please consider making a donation to Invest in ME, a charity dedicated to carrying out biodmedical research for ME, to honour me and the hundreds of thousands of others like me for whom today is just yet another day in bed with many more days in bed stretching out behind us and in front of us.
