Living With ME/CFS Lying Down Series
I have had severe Fibromyalgia Syndrome and ME/CFS for 31 years. I have needed to lie down between 18 and 23+ hours every day for decades.
Though I drew this in 2019 I did not have the spoons (energy) to post it publicly until 2021.
IN PAIN - I have NEVER been pain free in 31 years. I need to lie down most of the time and for several hours a day this needs to be totally unstimulated. Not doing anything. Although resting is best, even in stillness my body is alive in pain.
IN BRAINFOG - my brain hurts. For several hours every day all sensory input overwhelms me. It hurts to think, my usually bright and intelligent brain is overwhelmed by even the most minor stimulus. During lockdown, able bodied people can entertain themselves by doing things in the home. Most of my days I need to rest unstimulated.
TEXTING - Texting is my main mode of communication but it hurts to type and reading screens hurts my eyes.
SOCIALISING - I can rarely go out and sit up long enough to socialise for long in public so most of my social contact is via phone call.
TALKING - I prefer phone calls to video chat so I can close my eyes and not look at the screen or be seen. Talking on the phone is my favourite activity (though nothing beats in person visits and hugs from friends!) Telehealth during COVID-19 has made essential appointments with doctors achievable.
LEARNING AND WRITING/DRAWING- I need to lie down most of the time to use the computer and to create art or write.
READING - I have to limit reading as it hurts to hold books and my eyes hurt to read - most of the time I struggle to comprehend or remember what I read.
LISTENING - When I was well as a kid I used to choreograph dances in my head when I listened to music. For the year I was completely bedridden aged 16, I had to turn music off as even imagining movement would trigger extreme exhaustion and pain payout. Now I can enjoy listening to quiet music for some time each day, but I still need silence for several hours of the day to recover as I feel drained by the stimulus. ‘Sound sensitivity’ also means I am always drained of energy by certain sounds - like wind chimes and air conditioners.
Sitting up is extremely painful, and so too is sitting up in a wheelchair. It doesn’t make sense but I actually feel more able to walk a short distance then lie down or sit briefly, rather than sit up in a wheelchair for long periods. You may see me for a moment upright and appearing healthy, but most of the day I need to lie down.
See more of Shiloh’s art on her blog.
Support Australians with ME/CFS by donating to ME/CFS research.