'Living with ME and FM Series - Lying Down Collage'
copyright 2011 by Shiloh Moore
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
I had some beautiful black, white and silver papers and a black and white square frame. One paper was of empty bird cages so I wanted to make a simple collage of a dove flying free.
My favourite song by Emma Dean can be found on YouTube:
'Supposed Former Infatuation Junkie (Alanis)' by Shiloh Moore
Finally I played on the computer with my original drawing and came up with this.
I played with it a bit to give it a shaded background:
Then played with some colour:
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!
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.
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.
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.
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.
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'.
I wanted to make an image of life with intense colour, and intense shadow and beauty. I used flourescent colours in the background (which look much brighter in real life,) and in the foreground did the deep shadow of a stylised curvaceous tree using spirals and leaves in circles. Beauty can come out of darkness, even when it seems impossible when you're in it.
