Today is my last day of the Camino long walk.
For Julia and Mandie Chapman.
“I never understood M.E. until I had it. It’s like being sick in reverse.. the usual things to do to feel better don’t work.”
This is Julia’s story:
When were you first diagnosed with ME/CFS/Fibromyalgia?
2009
What was your life like before you first fell ill with ME/CFS/FM?
Very busy. I was an active person.. also a lot of family stress to deal with.
What do you miss the most since having ME/CFS/FM
Walking, studying and working my dream job that I spent 10 years training for. Also fun activities and adventures with my now grown up family as we used to do.
Describe your worst day with ME/CFS/FM
Sick, just sick. My whole body hurts so much, pain, burning. I feel so sick, unable to do anything but rest as best I can, which is almost impossible with the pain and sickness.
Describe your best day with ME/CFS/FM
When I can get out, clean and fresh. When the pain can be dulled by pain medication and when I feel happy enough for the pain not to matter.
Describe your typical day with ME/CFS/FM
There is no typical day with M.E.
What would you *most* like the world to know about living with ME/CFS/FM
You will never know how bad it can be unless you have it yourself. I never understood M.E. until I had it. It’s like being sick in reverse..the usual things to do to feel better don’t work. Exercise makes the illness worse, anything using energy makes it worse..even the happy things. There’s no cure.
And here is Mandie’s long struggle with the illness, she was diagnosed in 1995.
“That the people suffering are still the same people who need to be part of the human race and not ignored, shunned or pitied.”
What was your life like before you first fell ill with ME/CFS/FM?
Full, I had two children under 5. Worked full time in a job I loved and had just helped to restore and rebuild a house
What do you miss the most since having ME/CFS/FM
Knowing that on any given day I can do “normal” things. Having friends and a social life- being able to work full time. Being considered a full person
Describe your worst day with ME/CFS/FM
No control over limbs- incredible pain, headaches, brain fog. sleepless nights
Describe your best day with ME/CFS/FM
being normal again.
Describe your typical day with ME/CFS/FM
alarm goes off, I have to snooze it for half an hour before getting up else my legs collapse. Showers have to be judged as they make me ill. Pacing- no background noise like radios- tired all the time.
What would you *most* like the world to know about living with ME/CFS/FM
That the people suffering are still the same people who need to be part of the human race and not ignored, shunned or pitied. Also- that doctors do not always recognise the illness so it takes a lot of courage and effort for sufferers to get what limited help there is.
Anything else you would like to share?
There is a life to have with ME.
This dedication is part of Mike’s Camino de Santiago walk.
Read why Mike is walking 255 km for ME/CFS/Fibromyalgia.
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