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Then I was too exhausted and couldn't handle it anymore so I asked my mom if I could lay down somewhere to rest. She said that I could use their bedroom upstairs. Henk helped me upstairs and there I cried for a while. Because of all the frustrations I of course couldn't sleep, so a short time later Henk helped me downstairs again. We eat a bit, my mom was just setting everything ready and then we went home. The family said that we only had come for the food. On the way back home Henk and I talked about all this and we were terribly mad at the family. Henk didn't want to let my family in our house, but I had more trouble with this. Anyway after that day they never let hear or see something of them, so I luckily never had to make the choice 'family in or not'. The worst thing is that I can't look back at that birthday of my farther with good thoughts. And this is what I want to tell my family sometimes and sometimes not, what they did to my that day and that while they are family!!!! Now I am so far that my family isn't my family anymore.

The last few months my day is as followed:
somewhere between 10.00 en 13.00 o'clock I am enough awake to move again and open my eyes, at this moment I call Henk that he can come to get me. First he gives me my electric toothbrush, so that I can brush my teeth while lying down, still I manage to brush my teeth for only one minute. When I am finished I spit it out in a cup and Henk cleans it. Then he gets my wheelchair en helps me in the wheelchair, he puts my slippers on my feet and he rolls me to the stair elevator about 3-4 meter further on. There he helps me on the chair of the stair elevator, sometimes I self can put down the button to go down and sometimes Henk has to do that for me. Arrived downstairs Henk helps me in the wheelchair which stands ready there and so he rolls me to my hospital bed in the living room, where the cats already have warmed up my bed and there he helps me taking off my slippers and lye me in bed. First I hug my cats and then Henk gives me my laptop (which I got from my health insurance and I am very happy with it). I download my emails, try to read them and answer some, try sometimes to work at my site, play sometimes the games mahjong or rivers. Henk also sits then behind his computer, in between he gets something to drink for me. Even drinking is exhausting for me, that's why I drink too less and Henk has to urge me to drink. As my help arrives she washes me on bed and cleans my bed (while I am still in it, that's the advantage of my help, she has been a nurse so she knows how to do such things). After this Henk and I watch a bit TV and I try a bit to cross-stitch sometimes. At 17.00 o'clock I go upstairs again to rest, so the whole ritual starts again (in wheelchair, on stair elevator, in wheelchair, in bed). Sometimes I sleep, sometimes I can't sleep. Henk comes to get me around 20.00 o'clock (so again the whole ritual), so that we can watch a film together. I rather stay in bed at 20.00 o'clock, but I don't like this for Henk, so that's why I 'stand up'. I can't follow the film we are watching, so I just look pictures. Around 22.15-22.30 o'clock, when the film has finished, we go to sleep (again the same old ritual). The next day it is al the same. I don't find it boring, I am too tired fore that. I rather stay at one place, but where??? If I stay downstairs, Henk can't turn on his computer or the TV till I am awake a couple of hours later. At noon, when I have to rest, we have the same problem, it has to be as quiet as possible. If I stay upstairs I am bored, I think, because I still don't have a TV upstairs (this is because of the finances). Upstairs I can listen to spoken books, but that is only possible for about an hour and then I get sick of the noise.

Although every time going upstairs/downstairs is exhausting for me, but what else can I do??? Although, if I keep worsening then I later will be forced to take a decision. For now I keep doing it and will hang on the way I do now, later I will see when it is time. Henk and I just struggle on like this, luckily we still have fun and enjoy each other in spite of the misery and I still can enjoy the small things in live, even the dark and wet weather here at the moment.

September 2001 part 2

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