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But what do you think? Right, a week later we got an appeal from her Legal Aid in which she denied everything and just rock-hard lied. The week before I already almost called CWI (the agency where you have to be to fire your employee) to take everything back. I just couldn't do it anymore, all those letters, all those forms etc. I was completely exhausted, sick and I just had it. Then as on Monday 21 June her appeal came, I somewhat collapsed and told Henk that I would call CWI to cancel everything. Henk is a bit more calm in this kind of businesses and so he called the SVB-bank. They take care of the financial part of the PGB and the contracts and stuff, they were also the ones I called for information and they were the ones who advised me to fire her immediately. I first had to call her and ask her again if she was willing to take in account my MCS and if she was willing to use products which I can tolerate. She said that she didn't want to and so I told her she was fired as of immediately and she said 'that's fine with me'. We luckily taped this phone call, because now she denies everything. At the SVB-bank they connect us with a lawyer. We had asked for help with answering all the forms and writing a letter to CWI. CWI apparently didn't think my request to fire my employee wasn't clear enough and she we got a letter with many questions from them. Together with this lawyer we went through everything. As Henk read aloud the appeal, the whole case suddenly changed. We immediately had to copy everything and sent it to her, because now it was her word against mine. Apparently I am automatically insured for those things as a PGB-owner and so they took everything over for free. Oh, I was so happy, what a relieve... and I immediately completely collapsed.
The whole time I were bearing up, because it all to be arranged and filled in. Then as they said the liberating words that they would take over I didn't had to bear up anymore and I could crash. I couldn't talk anymore, I was sick as a dog and talking made it even worse, even to the point that I almost had to vomit. So I had to talk with Henk by msn, this was the only way for me to ask for stuff like food, water etc. My body was so completely exhausted that breathing wasn't something automatic anymore and so I often noticed that my body again had forgotten to take a breath. Also talking and breathing at the same time didn't work anymore. Normally you automatically breathe while you talk, but my body didn't. I were awake 1 little hour followed by 3 hours of sleep. I started sleeping more and more, while I normally sleep bad or not much. In the beginning I liked it, because finally I slept till the next morning. The time I woke up however, got later and later. First it was 14.00h, then around 16.00h or a bit later even around 21.00h.Sleeping also got deeper and deeper. On itself that's okay, but at one point it became a coma-like sleep. I didn't react anymore and I also couldn't react to anything anymore. In the time that I was in that coma-like sleep, I also couldn't eat or take my meds/supplements. This is nothing to worry about when it is for just a couple of hours, but at one point I slept for 30 hours! After those 30 hours I was awake for 2-3 hours in which I drank a bit, peed and drink some liquid porridge (swallowing was again very hard to do). A bit later I was barely and only with a lot of effort awake for 1-2 hours. So it again was almost like in 1999; again all the time paralysed, not able/hard to talk, difficult breathing, difficulty swallowing, not able/hard to react etc. I started to get a bit afraid. Afraid that it again would be like in 1999 and 2002 and this is something I didn't want to go through again... not a third time.
Then Saturday night July 10 I woke up 'too early'. I actually had to wake up at Sunday, so I was a couple of hours too early. I also felt different, I felt as if something had changed and I also could stay awake a bit longer. After a few hours I got back to sleep and the next day I again wake up, so again too early. This time I could stay awake even more longer. Monday I could move and talk a bit again and so I improved slowly again and it luckily didn't get a third time although it was very close. If the rate had put through and not would have changed, I would have gone through it a third time a week later. Maybe it's because of the durogesic patches? The other times I didn't had them and had to do it with tablets for the pain. Because I then really couldn't swallow at all I back then also couldn't take any painkillers and so the pain got even more worse. This time I also couldn't swallow any tablets, but because I now have patches for the pain it wasn't a big deal that I couldn't swallow any tablets. Henk could still put those patches on me and for this I didn't need to be consciousness. Severe pain eats energy and makes you feel pretty miserable, because the pain wasn't that bad due to those patches maybe that's why it wasn't exactly like 1999 or 2002?

July 2004 part 2

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