This is what the majority of my life is like. I sleep on average 14 hours a day, and most of the rest of the day is spent lying. To me this is natural – it is how I have lived my life in private since the age of 15. When people see me sitting up it’s for a brief outing after which I return to the lying position. These illustrate my life in bed:
1) ‘Lying With Fibromyalgia’ – copyright 2011 by Shiloh Moore
I have pain always. Even lying down exacerbates the pain. Sitting and standing are always painful. When I’m in a bad pain flare lying gets unbearable too. I continually have to change positions until I’m in the least pain. Resting alone does not take the pain away.
2) ‘Lying Reading’ – copyright 2011 by Shiloh Moore
This is a rare pleasure. It is painful to hold books, difficult to concentrate and take in what I am reading. I go in and out of ‘reading space’. The precious times I can read are priceless!
3) ‘Lying Listening’ – copyright 2011 by Shiloh Moore
I often listen to soft music. When first bedridden I used to choreograph dances in my head. But even thinking of this was exhausting so I’d have to stop the music. Other times my sound sensitivity would trigger complete exhaustion and drain my energy so again I would have to turn the music off. Nowadays I can usually handle music softly to pass the time.
4) ‘Lying Writing’ – copyright 2011 by Shiloh Moore
When I’m up to writing I most often write lying down. When I’m not well I write pressing matters in note form. When I’m going well I’ll write a letter or journal entry. When I finished high school and attended uni briefly I did all study lying down.
5) ‘Lying Typing’ – copyright 1998 By Shiloh Moore
When I was bedridden in the 90’s and was slowly improving, I wrote my book, typing on my laptop, lying down. I knew how to touch type so I’d close my eyes and type, then check and save my work.
6) ‘Lying Talking on the Phone’ copyright 2012 by Shiloh Moore
I take most calls lying on my bed with a headset on the phone so I don’t have to cramp my arms holding it.
7) ‘Lying Pondering’ – copyright 2012 by Shiloh Moore
Last year when I first released these images, ‘healthy’ friends commented how it made them realise I did everything lying down. They didn’t realise that most of these things I did on ‘good’ days. Most of the day I need to rest completely – and by ‘rest’, I mean fully switch off and do nothing. No TV, no music, no talking, nothing. I wanted to add this last picture to illustrate what I ‘do’ most of the time: ‘Lying Pondering.’ Most of the time, in the silence, and for hours on end, I have perfected the art of lying in solitude, thinking, pondering, and processing. I think deeply and most of the time I am bedridden, I am surprisingly not bored. My thoughts entertain me, I am busy thinking through my grief until I accept how things are, and then I ponder life and am grateful and happy just to lie there and ‘be’. After all, I am a human ‘being’ not a human ‘doing’.
Over the past year I have been able to sit up more – but this is still limited to about 4 hours per ‘good’ day. But I am so grateful for this. I can sit up and make cards or paint or socialise for brief periods and this brings me such joy. I still call it ‘sitting up‘, never ‘sitting down‘ as it is always an effort and never ‘relaxing.’
I still have pain flares which set me back for no reason for weeks or months on end. But when they ease, and I can sit in relatively less pain, life is so much easier and more fulfilling.
So there’s an insight into the life of someone with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and Fibromyalgia.
Note on Awareness Day, May 12, 2013:
I would like to add that when drawing this, it felt like I was drawing the mundane of daily life. It wasn’t until I showed it to my mum that I realised this is not how most people live! Living ‘upright’ all day is as bizzare to me as lying down all day is to most people. I have lived this way since I was a child/teen so I barely remember living any other way.
18 thoughts on “Living With ME and FM Series – Lying Down”
Beautiful matter of fact post Shi. I love your point about human being. It is nice to be isn't it. 🙂
Love it Shi. You have such a way with words and pictures. xoxox Kate
Thank you for sharing these images and expressing the painful reality of FM! You are such an inspiration you achieve much more than people who live 'up right'! Keep smiling . . . Deb
I am really grateful to you for this post. It sums up the real CFS journey so well. Even my closest friends would not realize how much of my life I spend lying down. I can go out for a while & look normal, but I quickly return to my horizontal life. When I'm on the phone or computer I am lying down. If only people knew it's not because we're tired, but there is an intrinsic physical need to be horizontal. Love to you on this difficult but rewarding journey. Xx
Beautifully written. You have really seem at peace with the way this illness has changed your life. Inspirational. Thanks Shi. Xxx
Thanks Sarah! Yes I heard that phrase when I was 16, and have clung to it ever since!
Thanks so much Kate xx
Thanks so much Debbie, you do so much too! We can inspire eachother 🙂
Thank you for sharing xx We are not alone!
Thanks Melinda. It's taken a lot of time but yes, I am at peace (most of the time anyway!) Thank you for your kind words, they mean a lot x Shi
those who do not have an ivisible illness do not understand how much time is spent lying down or reclined in some manner. maybe it will help others to understand a bit more. thanks for posting Shi! XO
Thank you for sharing this. I especially like the part where you said "My thoughts entertain me, I am busy thinking through my grief until I accept how things are, and then I ponder life and am grateful and happy just to lie there and 'be'." I've had that experience, too, and it's hard to explain to people whose lives are all about doing.
Thank you Sally J! Yes it's hard to explain when all others see is us in public, looking healthy when we're not. Thanks for your comments xx
Wow, thanks for that! It's a great experience to come to be comfortable with yourself and with simply being. I don't think everyone in the 'healthy' world stops long enough to experience it. I'm so glad you have felt it too. Thanks for your comment xx
Thanks Lib! Love you too!!!
I love you Shi, you are so courageous and inspiring to me.
thanks so much for sharing,at least I know Im not totally alone with this. Huge hugs
Huge hugs to you too, we are totally not alone xx