Two years later I've improved and am able to leave the house a few times a month, but unfortunately I still spend a lot of time stuck in bed. I never awake feeling well enough to get up, however some days it's hard but achievable - I might manage two or three hours downstairs - and on others it's totally impossible. I know how tediously repetitive and mind-numbing it can feel to be bedridden, so I've put together my top five things to do that help ease the boredom and keep your mind occupied. Obviously there are many days when even opening your eyes is a task in itself so all of this is out of the question, but on days where you'd be 'sofa-ridden' if you could manage the stairs - try any of the following!
01. "Read" & "Watch"
Literally anything and everything you've ever wanted to but never had the time to. It doesn't quite make up for the fact that you'd rather be at work, in education, living life like a healthy human being etcetera, but having lots of spare time on your hands does mean that you can read books and fall in love with cinema like never before. It's irksome when people say things like, "you're so lucky that you get to stay in bed and watch Netflix all day", however immersing yourself in literature and film to your heart's content can offer some consolation in being chronically ill. We've got to get our kicks somehow, after all.
02. "Exercise" & "Relax"
I know I know, many of us ME sufferers avoid the E-word like the plague, but exercise doesn't have to mean strenuous, potentially damaging activity - it can mean extremely gentle stretches or what I like to call 'bed yoga', often practiced whilst listening to guided meditation (I like Andrew Johnson's tapes) or soothing relaxation music. During those long months when I couldn't remember what standing on my own two feet felt like and was starting to really suffer from the negative effects of too much bedrest, I would slowly and carefully stretch my muscles and found that over time it eased both the dull, throbbing ache in my bones and joints as well as the awful widespread pain of fibromyalgia.
03. "Write" & "Create"
I'm an avid writer and could scribble notes and type away all day, and feel lucky that writing is one of those quiet hobbies that helps to keep me sane amidst the world of chronic illness. I was too poorly to write for a long time, but at the start of this year I gradually began feeling well enough to prop myself up in bed and write one short sentence a day - yes, it really was that slow! - until eventually, I was left with a catalogue of blog posts that I felt ready to share. As I set up Meg Says over the next few months, I was able to upload them and officially begin blogging. Fast forward to today; I've landed a writing job from my bed and can say that I blog for a living. Crazy stuff. It could be poems, plays, a book, film scripts, a blog, weekly diary entries - if you can think it, you can write it!
Writing may not be your thing but there are endless ways to be creative - you may love to draw, paint, sew, make jewellery, craft, knit or create online content using technology.
04. "Learn" & "Grow"
ME causes cognitive difficulties - read more about those symptoms here - which can make mentally stimulating activities hard or impossible, but if you find that your brain is feeling more 'alive' than usual then why not use this free time to broaden your horizons - is it ever a bad idea to expand your knowledge? It could be something like watching a documentary on a subject you've always found interesting, or if you're feeling particularly ambitious then something more challenging like learning a new talent or language - have you got a decent voice that could benefit from five minutes of online singing lessons a day or some knowledge of French from your GCSEs that you could brush up on? Grow your mind!
05. "Indulge" & "Care"
Some individuals looking at ME sufferers from an outside perspective may think that as some of us are unable to work, we've got 24 hours a day to ourselves that we can do what we like with. Sadly this couldn't be further from the truth and I've found that when your illness is severe enough to render you bedridden, your time doesn't actually belong to you anymore - it belongs to your illness, which dictates every second of your life. I think we can all agree that 'me-time' and self-care is vital in everyone's life, so if you have a period when your chronic illness isn't dominating 100% of your thoughts it's nice to take those moments and do something for you. It depends entirely on the individual what this is - for me, I keep a lot of my skincare on one of my bedside tables (the other is a mini-pharmacy!) and love to pamper my skin with a face mask whilst catching up on YouTube videos - but whatever you love to do that can be done from your bed, go for it. You deserve it.
My advice, summed up, would be that if you're able to achieve something whilst you're bedridden and it won't exacerbate your condition, it's okay to try it and see how you get on. Living in bed is devastating but there are things that can make it better - if you can, do!
How do you deal with being bedbound? Do you have any tips to share?