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It's been awhile that I have updated here about how I am doing now, so I will do this now.
Since dr. Tisscher treats me I am actually doing better. I do have (severe) relapses from time to time, but on the average I am doing better than I have been for the past years.
Meanwhile I have improved so much that I can walk again for about 10 meters and sit up 2-3 times a day for a half hour. During the (severe) relapses I am almost back to fully bedridden and so I than also can't walk anymore, but I can still go to the toilet with my wheelchair en cross-stitch a bit. Besides I don't think that you can improve without having a relapse from time to time and so I try to see the relapses as something good, a period of rest to remind me that I really really should watch my limits and that I can't do whatever I want. Of course it's hard to think like this always, but it's my way to not get depressed. You see, I can't stand the thought of being that ill and dying again.
Here in the Netherlands you have something that's called WAO, it's some kind of insurance for people who work and when they become ill they still have an income. The government wants to change this WAO. Now you get a percentage of WAO when you still can work for some hours, but they want to dismiss this so that the WAO is only for people who are totally unfit for work and will this be for at least 5 years. The insurance-doctors have a so called black-list which they work with. The diseases mentioned on this black-list aren't real diseases and so these people won't get WAO. Also ME/CFIDS and FM is on this list. This means that when I have my re-examination (probably this year) I will probably get thrown out of the WAO, because I have ME/CFIDS and FM and so in their eyes I am not sick and I can work. Well I really can't work and so I will have not enough money (income) for my ecological food, mineral water and medicines/supplements. So I am really scared that I will become fully bedridden again and that I again can't sit/stand/walk/talk or what ever. This makes me somewhat frightened for the future, because I absolutely don't want to be as ill as I were and surely not due to the government, because I than won't even have enough money to feel a bit better!!!

At the moment I have a severe relapse, but that's my own fault. Wednesday 28th May my (internet)friend Domie and her new friend had come to visit me and brighten me up from my severe relapse. Around 11.30 hrs they arrived. We first sat in the living room where Domie tried some trousers of me. Domie has namely lost some pounds since she has new meds and because I had some pants which where too big for me, she tried them and yes they fitted. After that we went outside, while the men were working on her computer. Because it was very hot I lent Domie shorts and a shirt... this is easy when you have different sizes in the closet, for I have been 75 kg and now I am about 52 kg (this is my normal weight) and everything in-between. Outside we have been blabbing with one of us falling away sometimes and then the other chatted alone for so long. In between the men came also outside and so blabbed with the four of us. At some point Domie and I were really exhausted and we went upstairs to rest a bit. We rested for an hour and after that we chatted for another hour before we went downstairs again. During that rest-hour a had a small epileptic seizure. I hadn't had this for almost a year thanks to the homeopathic remedy for polio. So this is for me a sign that I really have to be careful and do easy. I asked Domie not to tell Henk, because he then would have sent them away because I had to rest but I didn't want to end the day yet. And so as we went downstairs we did as if nothing had happened. Towards the evening we blew a fire in our Mexican stove. Actually I can't tolerate this very well due to my MCS, but it's so relaxing and cosy staring in the flames, that I just went for it. Around 22.30 hrs they left and I immediately went to bed, tired but satisfied. It was a lovely day and I had the feeling as if I were on a holiday in some exotic country. I do have a relapse from it, but I take this for granted.

In 1997 I discovered gardening, in fact too late because I then already hadn't much energy for it.
In the spring of 1998 I discovered ice plants. I have been planting them sitting in my wheelchair. As I was finished I immediately had to lay down, but I did it. A couple of months later I was even more happy with it, because meanwhile I was fully bedridden but I could see the flowers I planted from my bed at the window. Since then ice plants are for me some kind of symbol and each spring my mom planted them for me in the basket in front of the window. This year I did it my self again, sitting in my wheelchair and after it immediately laying down. The beauty of these flowers is that they have really intense colors (intense yellow, intense pink etc) and that you can't see in front which color they will get. What I also like about them is that they open in the sun and close in the night to open again the next day. It are really strong flowers which bloom from May till September, I think. Maybe that's why they are some kind of symbol to me; colorful, sunny and strong.

June 2003 part 1

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