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My boyfriend had once seen the last few minutes of a talk show on TV that was about ME. As I came home from work he told me that he knew what was wrong with me; I had ME. I didn’t know this disease and lay it beside me thinking that soon it was Christmas and then I can rest.
In December 1997 I eventually stopped working after I almost hit a car or tree a few times. Again I went to the doctor and he sent me to a specialist and a shrink; he thought maybe I was depressed but didn’t know it myself... NOT! A few weeks later I had to go back to the specialist to hear the results of some examinations.

I finally know the name of my disease
Meanwhile I started searching for information about ME. I found the Dutch ME-Organisation, they sent me some info and as I read it I knew what was wrong with me. What a relieve …. I wasn’t imaging it, it was real what I felt, I wasn’t crazy.
The specialist didn’t know what was wrong with me, the results were okay. Then I mentioned ME; he said that ME is not real, I was crazy and needed a shrink. Before I knew it I was outside. What next?

Different GP
I put an ad in the local ME-newsletter. Someone of my own town referred me to her doctor. I called him and he came to visit me, I couldn’t walk for more than 5 minutes. He came to me, saw me and said that it wasn’t normal for a young woman as me to walk as I did. He sent me to university hospital.

Finally the diagnosis
In May 1998 I went to see professor Pop, he took blood and urine. Three weeks later I had to come back for the results. After the first consult I had to stay in bed for three weeks because I was exhausted, so it was okay that I had to come back after three weeks, I needed those weeks. Professor Pop told me I had progressive ME and FM and he said I had to go for rehabilitation.

Rehab
At home I made an appointment for rehabilitation, but I had to wait for three months. Before these three months were over I was already fully bedridden for 2 months. My doctor arranged an ambulance so I still could go to this appointment. Later on the rehabilitation specialist came even to my home-address, because even going with the ambulance was too much for me. I had to practice to sit for 5 minutes, otherwise they couldn’t take me in for rehabilitation. I couldn’t sit for 5 minutes, because I did get a blackout and then I couldn’t move or talk anymore. My doctor then arranged that someone came to me to do exercises on bed. She stopped after two months, because I did get worse of those exercises. At last I couldn’t even do 1 rep, because my muscles immediately went in a cramp. She gave me the advice not to go for rehabilitation, because with me it went the wrong way, so I didn’t.

Hospital
At the end of November 1998 I was hospitalised for neurological problems and because my doctor thought that maybe there was more then ME, because he never heard or read of someone who was as ill as I was. I was in the hospital for 10 days for a MRI-scan, EEG, nerve test, muscle test and examination of spinal fluid, all these test were okay. As I came in the hospital I already was totally bedridden for six months, I could only move myself in a wheelchair for 4 meters. On Friday afternoon I came in and that was the last time I could eat. The next day I almost choked in my food, because my swallow-muscles refused service, so I couldn’t swallow. This happened because I had to walk to the toilet, I made it only once, after that no more. I have asked several times for a wheelchair to go to the toilet, but they refused because they thought I could walk if I wanted too. My boyfriend and my mother have asked several times for a wheelchair for me, but no I didn’t get one. On Monday I finally did get a wheelchair after my mother has yelled to the nurses.

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