Personal
Describing Fibromyalgia and CFS
Describing Fibromyalgia and CFS to those who haven’t experienced chronic pain and illness can be, at mildest, a challenge! Here are some example descriptions, from people who’ve tried to put it into their own words:
From Jenn Vesperman:
Think about how you feel when you get a flu, all sniffly and sneezy and with a headache [...]
Reunions
This article was written by Jenn Vesperman. Used with permission.
I avoided my high school reunion.
I don’t like social occasions much anyway. I hate getting tired so quickly, I hate having to avoid smoke. I hate all the ‘good advice’ about CFS, if I explain why. I hate the weird looks if I don’t.
But that’s [...]
Experiences In A Rehab Hospital: The Followup
Please also read the previous article Exercise and CFS: Experiences in a rehab hospital, for the complete picture.
9:00 am
Wake up
9:30 am
Breakfast, get dressed
10:00 am
Gymnasium
Doesn’t sound much like a typical morning for somebody with severe CFS and fibromyalgia? It’s mine, four mornings every week.
… Or at least, it was for a while. I wrote that article [...]
Exercise & CFS: Experiences In A Rehabilitation Hospital
I spent a month last year in a rehabilitation hospital – Cedar Court. Following this stay I returned for three mornings a week as an outpatient. I also spent a further week there last December for a ‘top up’. I’m usually called Ricky, I’m 24, and I’ve had CFS and fibromyalgia for four years now.
Fishing Without A Hook
This article written by Emma Corcoran. Used with permission.
It took four years for me to be given a diagnosis of CFS. This is a piece I wrote a few years ago describing what it felt like to live with an undiagnosed condition.
I cried a lot last week. I cried on the tram. [...]
Holding Action
I live in a house.
The house is on the bank of the river.
The river is in flood.
Each morning, when I wake up, I look out the window and the river is a little higher.
First, I put rocks on the banks of the river. It kept out the water but the [...]
Well For A Week …
What would I do if I was well for a week?
Go on long bike rides and feel the wind in my hair
Visit some friends who live a few hours drive away – too far to visit now.
Eat fish and chips, and pizza, and sugary stuff.
Run! Just because I could.
Go see the Rocky Horror Picture Show [...]
But, Aren’t You Paralysed?
It was as honest question. The young man seemed genuinely confused, blushing as I kicked my feet against the wheelchair’s foot-rest to demonstrate that I was indeed able to move.
The preceding parts of the conversation had been unremarkable. The usual small talk as he helped me fill out the university enrolment forms, until he asked [...]
Functionality Levels For Ricky, Start of 2003
Some notes about these levels:
If I try to do something at a level above the one where I am functioning at that point in time, I will overdo it and crash back to a lower level.
At all of these levels but especially the lower ones, even some of the things I can “do” I may [...]
Envying Stephen Hawking
This article written by Jenn Vesperman. Used with permission.
I’m sitting in the bath, which is the one place which causes the pain to fade for a time. I think about what parts of the body I’d trade to be well. Would I lose a leg? An arm? The sight of my right eye?
And I [...]