These Chronic Fatigue Syndrome ME photographs give an idea of my experience of life lived for 14 years with severe CFS.
CFS = Chronic Fatigue Syndrome (Read an article on What is CFS?)
ME = Myalgic Encephalomyelitis
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My name is Katherine Owen (I often use Katherine T Owen as my author name).
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When you are living with chronic illness, it's normal not to have a lot of photos taken. Who wants to see a photograph of themselves looking ill?
Mind you, in the case of photographs with people with
Chronic Fatigue Syndrome ME, often their apparently healthy appearance
the level of illness and pain with which they live.
(It's one of the reasons why CFS/ME is sometimes called an Invisible Illness.)
I am glad now that I have a few photos of those years, although I have found it emotionally challenging to put together this article.
These photographs remind me just how difficult life was for so very long.
Now I am walking and talking again, every day feels like a celebration.
But I still live with Chronic Fatigue Syndrome ME and naturally I wish that I didn't.
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Care provision was limited
Provision of care services over the 14 years I was bedbound wasn't good. I was unable to even feed myself and yet had only 4 hours care a day.
Eventually someone helped me to get an extra hour a day of private care.
For many years I had a slice of dry bread left out next to me by a carer (caregiver) the night before. This was my breakfast.
When I got the extra hour of private care in the morning, it allowed me to arrange a carer to feed me breakfast.
Many of the private carers didn't speak much English which was a problem. But they were all truly delightful people.
I wasn't able to feed myself or be propped up for long.
For over a year I ate puree. It was so hard for me to chew and swallow and care time was too tight to allow me a break during the meal.
It was a problem maintaining my weight. In the photograph above I am down to 7 Stone (44 kg).
Severe Multiple Chemical Sensitivity (MCS)
This Chronic Fatigue Syndrome ME photograph is taken of me on Christmas day one year.
I had severe Multiple Chemical Sensitivity and reacted to the paper on the Christmas crackers. The gloves helped to reduce the allergic response.
Visits were rare
Visits were rare, even rarer was a young visitor. I remember how delightful it was to meet my friend's child.
If you are willing to answer children’s questions in a straightforward way, they often have a wonderful ability to accept you complete with an illness.
A child's ability to be in the present moment can be a wonderful balm to relieve loneliness.
Out again after 4 years in a room
After discovering that along with Chronic Fatigue Syndrome ME I
also had Multiple Chemical Sensitivity (MCS) I cut out everyday domestic
chemicals and became well enough to transfer into a wheelchair 4 times a
Two of the trips allowed me to leave the house and return. I would go out into the garden or sit in an old car at the front of the house (see photograph below).
For the following 7 years (until the dramatic improvement in 2008) my world was considerably
My Life in a car!
With only four separate care sessions a day, considerable management of my energy levels and the cooperation of others were necessary to allow me to go out each day.
There was also a certain danger involved– there were frequent occasions when I was stuck in the garden when it rained, or stuck in the car when a carer (caregiver) did not turn up.
I chose to treat it as my job to leave the house in this way. The routine helped to give my days direction and purpose.
Wishing you health both within and beyond illness,
Katherine T Owen
Katherine T Owen runs this website - www.HealingCFSME.com.
She is author of Be Loved, Beloved (Read it in paperback at lulu.com or on kindle)
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