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Meanwhile the pgb-examination of December 16th has taken place.
Overall it was a nice lady, but well everyone can act nice so that says nothing (unfortunately I have experienced this several times).
She went on from the point of their information from last year’s examination. I liked that, because now I heard what they thought about my illness last year. The examination/conversation was very long (1,5 hours!) and was really exhausting. Already after a half hour I could barely keep my eyes open and follow it and at one point I fell asleep. Luckily she didn’t mind and even understood it! So she just let me sleep and went on without me.
She said that she saw that I was barely able to do something, but she founds that Henk could do more. Because Henk also has some health problems (ME – he can barely walk 500 meters – and epilepsy (grand mal) despite medication) we think Henk already has enough with me and the cats. Considering the conversation we apparently couldn’t make her clear that also Henk has to make choices between things that must and things that give relaxation. Luckily our spd-consultant noticed this and helped us. He told her that for them, healthy people, stuff like doing the dishes is nothing. That doing the dishes is something you don’t need to think about, you just do it in between other stuff, but that this isn’t the fact for (chronic) pretty ill patients. So he understood real well that Henk rather worked on his computer then doing the dishes, at last the computer is relaxation and a big outlet for Henk. A human just can’t do only stuff that HAS to be done, a human also needs relaxation and a moment of rest. And for chronic ill people and the partner who lives with a chronic ill patients is an outlet and rest really important. At last they have much more stress due to the illness then a healthy person, because a chronic illness is not just something. Also the fact that Henk has grand mals despite his medication is a sign that he needs enough rest and sleep. Everyone with (a partner with) epilepsy knows that not enough rest and too much stress can provoke an attack. Besides this the attacks of Henk are so severe that after an attack he isn’t responsive enough nor is he able enough to do stuff and that’s not only annoying to him but also to me. My pgb-help/carer is not available 24/7 and so Henk has to do everything when she is not in, but this is not possible if he has had an attack that day.
I wonder if we could make that clear to her and also my spd-consultant wonders if she sees that Henk can’t do more then he already does.
At least she has arranged that my current contract of 22 hours goes on till March 1 2004. They want to ask for information with my doctors before they take their decision. Because due to the holidays they won’t get it in before January 1 2004, the contract actually end 1 January 2004. So I am glad that I don’t have to concern about this. It’s now waiting for their decision and then later on maybe again filing appeal. I do hope I don’t need to this time, because all those appeals are really exhausting for me/us and bring a lot of stress and frustration.

Yesterday (23 December) I got the decision from my health insurance about the daisy-player and as suspected it is denied. I can go to court, but will it do something…? I also got a phone-call this week of someone who arranged a daisy-player for me after reading my website! I can’t tell you who it is, because maybe that person will get in trouble but I think it is so sweat and I am really happy about it! Now I still can keep ‘reading’/listening spoken books, thanks to this person!

December 2003 part 2

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