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?
Meg
Oh how I wish wonderful blogs like yours (or just Internet in our house in general!) existed twelve or so years ago when I was in my teens, six years into ME and bedridden! I had to wait two whole months in between each wonderful Cheers magazine from AYME for any contct from others suffers from the outside world! It would have really helped me then to read such a fantastic piece as this, so thank you very much for having shared it as I'm sure it will help others!
ReplyDeleteBack then, the Hi-Fi by my bed (with tape player!!) was my must-have piece of ME survival kit. Nowadays, it's been replaced by my faithful ipod. On my bed and/or sofa days when I'm too poorly to even knit or read or watch anything, being able to listen to an audiobook or a podcast or two is a true life-line. Not only because it helps keep my head occupied but it also helps me feel like I'm nonetheless connected to the world beyond my window.
xxx
Thank you so much for reading and commenting Fran, I truly appreciate it! I say this to people all the time - how lucky I feel that we have the Internet and can connect with others without leaving our beds - I can't imagine how tough it must've been to be bedbound with no access to the outside world, blogging has been a saviour for keeping my mind occupied and the whole online community mean so much to me. That's why I do this, and I really do hope that it helps people :)
ReplyDeleteI agree, that's a great point - I'm a bookworm so I've always got a book on the go but I haven't tried listening to audiobooks yet. I've heard amazing things about Audible so I may have to sign up and see how I get on. Thanks for the recommendation :) I also listen to lots of relaxation tapes as I mentioned in the post so headphones and an iPod are a must, you're totally right! x
This is an absolutely brilliant post Meg! Before I started blogging I felt like I didn't have much of a purpose and I've only got you to thank because your blog is the reason I started mine:) the online spoonie community really does help you get through those bad days, I'd honestly feel like I had nobody to talk to without you all! Lots of love, I hope you're feeling as well as possible x
ReplyDeleteOhhh stop, you're gonna to make me cry! It means so much, thank you! I'm beyond happy that you started blogging, too - isn't it great, it really makes me feel like I'm contributing to something and before when I was just in bed all day I felt pretty useless. Now, even if I'm in bed all day I might've written a blog post - bedbound blues begone! It truly does, so grateful for you and everyone else. You too honey, sending love your way x
ReplyDeleteSuch a good post Meg, being bedridden is so tedious and boring but these tips will without a doubt help those who don't know what to do with themselves in that state or how to avoid the innevitable downer and getting seriously depressed. Andrew Johnson should start paying us for mentioning him so much, we're like his resident advertisers!
ReplyDeleteSuch a great post, really. When I think about this year, one of the greatest thing that happened in it is to know some M.E. sufferers, to 'see' your community. I wish I can find proper words to explain the gratitude which I feel cause of it. But moreover, I love your blog not because of your illness but because of your style and additude. For me none of you are not define through it, you are all different except one and you are showing your personalities. Thank you. Big...very big:)
ReplyDeleteI really loved reading this post, I can imagine how hard & frustrating it must be to be bedridden but it's inspiring what you've managed out of it! There really are so many ways to grow & create opportunity without leaving your bed, and you drfinitely proved that!
ReplyDeleteHow did you manage to score a social media job?! That's amazing. I've been trying to get into the field for so long now and am so disheartened, I can't seem to
Thanks Angela, I'm in love with your Instagram at the moment and it's lovely to hear from you! :) It definitely is very frustrating, especially when you're a hardworking and motivated person (as most ME sufferers) are, it's difficult not to be able to achieve what you want to but accepting your situation and adjusting to your limitations really helps. Networking and putting tons of effort into my writing - it eventually got noticed and I was offered a job! I wrote a post about it, it's in my archives :) don't give up, it's quite a long road but perseverance will get you there! Good luck! x
ReplyDeletehttp://www.meg-says.com/2014/08/my-new-job-blogging-for-living.html this is it, if you're interested! x
ReplyDeleteAnother fab post to enlighten people on how you deal with ME; I think quality time to look after yourself is the best medicine - we live in a society where 40 hours straight work is normal and if you don't do the hours or aren't stressed, you don't deserve pay or the right to moan. HELL NO.
ReplyDeletePeople are still so uneducated o the effects of illnesses such as ME, and your posts are a great help for others!
Lauren x
Britton Loves | Lifestyle Food Fashion Beauty - www.brittonloves.blogspot.co.uk
Hello I am Meg too in internet, just found your blog and your 3 friends, thru some other pages and you and they have some illness, I not have same illness like you but i was ill on stomach 3 years and i was non stop burping it was strong reflux or something like my digestion was not working and my life changed from had to stuck at home mostly and feel so bad and nursea or thowing up after big meal as it was not digested, then in 2013 i decided i will try some herbs here in poland as i live in poland they are very strong -Balsam kapucynski and they only made me worse, as it made all good nutrients deluted from body, and my heart started pounding in night like a bell then stop then pounding i not had strength to walk even in my room -felt like hands are heavy, couldnt eat, breathing was problem, like something swollen on the left, i though i will die then really, not kidding, i couldnt work, couldtn go shop, i said to god that i have to be healty to be able to go out and buy things and work in some time again as my situation was so that nobody would help me - my mother died few years ago, sister abroud, alcoholic father, and no boyfriend no family beside alkoholic father who also need help as he drink, so i was afarid that i will be stuck in bed as was so weak and breathing problems, and not digestion almoust heart pounding, one time when i ate some bread it started go up and i felt like it will choke me and i got panic attack with those weird treambling veins even in brain- i though i will die- but welll it was from fast breathing- so after 3 months my friend kate told me to pray a pray called 54-Day-Rosary-Novena/- in one intension- so i did for 54 days, and i started to feel better after some time and now i am really better maybe not 100 % yet full healty as sometiems i have some issues and have still high heart pulse rate and i wait maybe i still need more good diet to fullfill lucks but my digestion works again, and have more strength, i also have some nervs feeling sometiems but not as then, tehn i had veins trembling even,
ReplyDeletehere u have about that pray, https://www.facebook.com/pages/54-Day-Rosary-Novena/120421517989201?sk=info&tab=page_info
and it will not make change just in few days but i am sure that Mary will listen to your intension and u will get better, try it if you have time, you pray 3 beads in day for 54 days, it might be much but i wanted to try and it helped me and health is very importend and doctors not helped me as they thought that maybe i am nerves and that why i weak and ill. Tell your friends too about it those friends who ill and want to do youtube channel with u, as i read post, i also have youtube and blog, when i was so ill wasnt able to do it, but then i started get better and i started do it again.
greetings Meg
Thank you! Absolutely, self-care is vital and I think a lot of people underestimate how important it is. If you don't take care of yourself then everything else in your life suffers - relationships, work, social life etc. Aw that means the world, it's why I do posts like this after all - to hopefully help people with ME and also help people who don't to understand :) lots of love x
ReplyDeleteHi! So sorry to hear of your health issues. Glad you have found a solution though, and thank you for sharing x
ReplyDeleteOh thankyou! I actually did a little reading spree of your blog after I posted that comment & read it! You're an amazing writer, I can see why you got noticed :) x
ReplyDeleteAww, that's so kind of you - thanks for reading, I really do appreciate it :) wishing you all the best of luck, things will fall into place eventually even if the journey feels long and like you're not getting anywhere x
ReplyDeleteI can't imagine how hard it must be, I usually get very boring after 3 days of being in bed with cold! My saviours always are books - especially long series - and TV shows, I love trashy reality TV shows and there are plenty of those too. ;)
ReplyDeleteMademoiselle-Lala.com
It's pretty dire! Once you get hit with an illness like this it definitely makes you realise how much you took your health for granted before. Ooh same here, I'm currently making my way through the Game of Thrones series and love it so much, the fact that they're such long books is great as I usually finish books within a week and love having a good series to get stuck into. Haha same here, when I want to 'zone out' and my brain isn't up to much I stick on the Kardashians - total guilty pleasure! x
ReplyDeleteBeing stuck in bed can sometimes make me feel like I'm going mad! I like to read, paint my nails and do sticker books (yes I'm 17 not 7!) I also think simple things like having a posh hand cream/lip balm next to your bed can make you feel better and a bit uplifted
ReplyDeletechloe
http://www.chloe-meandme.blogspot.co.uk
Same here, I think that's why it's so important to keep your mind occupied if you can - it's not always possible as sometimes all you can do is lie in the dark, but when you can it's nice to do something productive or engaging. Ah I totally agree with reading and nail painting! I do exactly the same thing, thanks for sharing :) x
ReplyDeleteLove your post! I agree that it's super important to love and take care of yourself and turn it into a habit and a state of mind. <3 You have a really pretty bed by the way! Xxx
ReplyDeletehttp://walksaroundthemoon.blogspot.com/
Thanks Joanne, I really appreciate you reading and taking the time to comment! I agree, I think being kind to ourselves is important :) aww thanks, I got the new sheets recently and love them a lot! x
ReplyDeleteYou welcome, now one of my friends is ill in hospital and I pray for him with the same prayer hope it will help
ReplyDelete