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Wednesday 3 October, 6th week declining scheme:
At 15.30 hours Henk came with the telephone upstairs and woke me up cause the gp was on the phone. I told the gp about the paralysis and he thought the same as I… namely that it is because of the exhaustion. This week the tramadol will be 2 instead of 3 and the neurontin will become 4 instead of 3. I now take at 11.00 and 23.00 hours the tramadol and at 11.00 - 19.00 and 03.00 hours neurontin, at 03.00 hours I take 2 neurontin instead of 1.

It’s now Saturday while I write this and I must say that it’s tolerable. I don’t have a complaint due to the neurontin, but I do have pain and because of keep on losing weight I have of course more pressure pain. A while ago I lay comfortable at my air bow mattress, but now not anymore… but what can you do against it. I suspect that this is because I don’t have much fat anymore around my bones, I namely weigh just about 44,5 kilos!!... at least that was last Saturday. I don’t know what it is now.
 
Because I have been too sick and my laptop was gone to the fabric end October I couldn’t keep up everything precisely. What I write from now on is what I have written in my agenda and what I remember.
 
Wednesday 10 October, 7th week declining scheme:
The tramadol will become one a day and the neurontin will become 3 times a day 200mg.

That day, 10 October, begins my ‘record of not being able to open my eyes’. I namely haven’t been able to open my eyes 40 hours straight-ahead, while I was awake in between. I wasn’t awake for long in between, but I was awake sometimes for at least 30 minutes and then I was again too tired to stay awake. During this period, those 40 hours, I also wasn’t able to speak was barely ‘present’ and I barely could move. I actually had a descended consciousness that lasted 40 hours!!! As I eventually could open my eyes again after 40 hours, I could keep them open for one hour and then they were closed again for 8 hours. After those 8 hours it was normal again. Those first days it was hard to take just 1 tramadol cause I had a lot of pain, luckily this went better after a while.

Thursday 18 October I took my last tramadol, but I couldn’t manage without it. Saturday 20 October Henk gave me a tramadol, he couldn’t stand it anymore. I was hallucinating from the pain and I hurt myself by trying to tie up my legs. If I had a knife with me I preferred to cut of my legs. The next day I tried again without tramadol, but it was all the same again.
 
Wednesday 24 October I had to raise the neurontin to 3 times a day 300mg and still try not to take the tramadol. But it I didn’t succeed. Eventually the gp said at 1 November that I then should take that one tramadol for a little while together with 3x a day 300mg neurontin.

On Monday 3 December the scheme is adjusted: 1 tramadol stays (luckily!!) and the neurontin will be raised to 3x a day 400mg. We try this to see if I notice any difference with the past weeks.
 
Today Friday, 14 December, is decided that I keep doing the scheme above. If the pain doesn’t become less the coming weeks we will decline the neurontin again. If the pain gets more we know that the neurontin does something. If the pain stays the same we know that the neurontin does nothing.
 
I have gained a bit of weight, I now weigh 46,8 kilos. Unfortunately I have weighed a bit more before that so I again have lost some weight the past weeks. I can’t say how much weight I have gained cause our scale has broken and we had to buy a new one; at this new scale I weigh 46,8 kilos. The last time that I have weighed myself at the old scale I was 44,5 kilos.

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