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Coma
Eventually in 1999 the doctors thought I would die. I was in a kind of coma for three months, I was merely ‘awake’ for 1 hour a day. The other 23 hours and more I was a sleep or passed away; I call it this way because I don't know how to call it, but I have never felt as if I had slept... I just weren't there somehow. I couldn’t swallow, merely 3 tiny little zips of water a day, I was paralysed, I couldn’t speak because I couldn’t make any noise, often I even couldn’t breath anymore. All the muscles were so tired that they refused service, they didn’t know how to work, I had no control over my body. Actually it was waiting till my breathing stopped forever, many times I even hoped that this would happen.

I don't want to anymore
The way I ‘lived’ those 3 months and if it would stay like that then I didn’t want to life anymore. It was no life anymore, I lay in bed waiting for dead... the salvation. I even cried and prayed to God that please he had to come for me. I wasn’t able to do anything anymore, just lying in my bed. Again I was hospitalised, of course another hospital then in 1998. Again all sort of tests were done, but again everything was okay. They came to the conclusion that I really do have ME. In this hospital they were all very nice, also the specialists. If I needed more painkillers I just had to ask for it. After 14 days I could go home. The specialist told me that he couldn’t do anything for me and that at home I could come more to rest than in the hospital. He arranged an ambulance to pick me up.

A bit better again
At some point I could swallow, move and talk a bit again. The specialist told me that when my body wasn’t that tired anymore everything would start working again. I can’t explain why, at some time it just went a bit better. It still took 6 months before I could eat properly again and you could hear that I said something. My voice is still after a year not the way it should be. If I want to telephone I have to shout a bit, so that on the other side of the line they can hear what I say. I am still not that better that I can walk again, no I am still fully bedridden for 24 hours a day 7 days a week. They still have to wash me on bed and have to put me on the commode-chair and clean me.

This was my story in short, I hope you have some help of it.

My symptoms (not all, that is too much to tell): of course tiredness, muscle pain, joint pain, infections, epileptic seizures, cramps, paralysing seizures, memory loss, lack of concentration, Irritated Bowel Syndrome (IBS), blackouts, dizziness, nausea, allergies, difficulty talking, fever and so on. You can better check the symptom list on my site, because I have almost everything that is mentioned.

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