I have had Chronic Fatigue Syndrome since at least 2000 and it is believed it has been with me since before then. I suffered a stroke in October 2000 and I found that because I was at my lowest point after the stroke the CFS really took off in a big way.
In England I had a support network which I was able to turn to when things got bad but mainly my husband was my carer.
When we moved to France in 2004 I found that Chronic Fatigue Syndrome and its associated conditions are not as readily accepted as an 'illness', I could find no one who really understood what the illness is or how to treat it.
For sufferers moving to France who already have this condition and are receiving treatment and support this can be an emotional as well as physical blow.
I had a particularly bad relapse last year and was hospitalised for two weeks before being transferred to a rehabilitation centre. The centre is a fabulous place with every form of rehabilitation under one roof. Anyone who has a stroke, joint replacement, accident or degenerative illness is sent to a rehabilitation centre for at least a month.
Each patient is given their personal schedule for different therapies. There is physiotherapy, occupational therapy, meditation, a therapist to help you back to work, a sports therapist and hydrotherapy.
Unfortunately as CFS is not understood I was given a programme of three quarters of an hour occupational therapy, followed by an hour of physiotherapy in the morning. After lunch an half hour of mediatation, an hour of hydrotherapy then another hour of physiotherapy. If you are a sufferer of the condition you will realise that my body was unable to take this amount of exercise. I collapsed after just four days.
The physiotherapist told me if I was at the centre I had to do the exercise and refused to listen to what I had to say. She admitted knowing nothing about the condition. Luckily I saw a psychiatrist who spoke English and agreed that the condition couldn't cope with such extreme therapy and it was cut down.
After I returned home I improved with the help of my husband and I saw my GP who referred me to a local physiotherapist. Even though he didn't speak English I was able to explain the problems and with the help of a copy of a paper written by an eminent doctor on the subject which had been translated into French for me we agreed upon a physiotherapy programme that suited me.
He used a TENS machine and I use my one at home for the pain. The meditation in rehab was good and I find that useful as well as the breathing exercises.
I have trawled the internet and found a support group in France for CFS/ME and associated disorders
http://asso.nordnet.fr/cfs-spid/home.html this is just a support group. Click on Permanences on the left hand side of the page and you will find where support groups csan be found.
If you prefer to use support groups in English http://foggyfriends.org, http://www.brainfog.org and http://www.meactionuk.org.uk are a few who offer advice and forms for interaction.
If you have CFS/ME and live, or spend some of your time, in France you can contact me on Charallais@aol.com and we could support one another.
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