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As suspected I slowly started to crash after I have put my site on the net and sent the newsletter. The next day I of course noticed it even more. For me it mostly goes in 3 days:
» the day after I went past my limit with something (a phone call, updating my website etc.) I feel more exhausted, sicker, dizzier, more nauseous, even more severe muscle weakness etc.
» the second day it all is even somewhat worse and
» the third day is the worst and depending on how much I have past my limit and how I felt before it will depend how long that third day will last (a few days, a week, a month?) before I slowly will improve somewhat again and will be on the level of day 2 again, then day 1 and hopefully then back on the level from before passing my limit.
I don't know if this is the same as with outer ME-patients, but this is the way it goes 9 times out of 10, but well I then just say you are young and you want something *LOL*. I do want to mention though that passing you limit isn't really healty when having real ME and so you mustn't do this too often, because then you have a great risk of getting worse and worse and who know even permanent… so watch you limit! This by the way is also the reason why CBT and GET works contrarily with the real ME-patient.
And why keep I saying ‘real ME'?
Well, because nowadays the diagnosis criteria is pretty weakened and here in Holland is due to the group from Nijmegen (who promote CBT and GET as THE therapy for ME-patients) even fatigue the only must! All those other complaints are not necessary, while just some of those complaints make a difference between ME and for example chronic fatigue or burn-out etc. The complaint ‘malaise after minimal physical or mental exertion with prolonged recovery' is just that what distinguish us. Fatigue is yet the least that borders me compared to my other complaints.

But well meanly we are a month further and again a lot has happened.
Monday 8 November was the hearing at RIO for my appeal against their decision about my PGB (household; class 3 = 4 – 6,9 hours and personal care; class 5 = 10 – 12,9 hours a week).
My team leader from the Private Nursing and my father went for me to the hearing. Of course it again meanly was about psychic, that I refuse to rehab etc. First of all ME is not psychic, I do think though that ME also has influence on you psyche as actually with any (chronic) disease. Second I don't refuse to rehab. In 1998/1999 there would be an admittance in a rehab-centre. Before this I already had asked my gp for physiotherapy on my own request and he approved. Because I am fully bedridden (back then also already) it became physiotherapy on bed. The meaning was twice a week, but unfortunately I couldn't handle this physically. The physiotherapist came, did some exercises with my legs (passive and active) and as she came back later that week I could only do 1 exercise with 3 repetitions before everything cramped and my leg again was in coercion cog (correct English). So it became once a week, but each week I could do less and less. First it only were cramps till coercion cog, a bit later there were also paralyses and so it became once per 2 weeks. The physiotherapist herself made contact with the rehab-centre where I would be admitted to ask what they do with ME-patients, how there schedule looks like etc. They answered that they don't look to how the patient feels, but that they just have to do what the schedule says. As she said that her patient suffered from paralyses and stuff, their answer still was that they also don't listen to that. The next time she came to me she told me all this and urgently advised me no to go there, because there I only will get worse and worse. After 3 months the physiotherapist herself quit with giving me physiotherapy on bed, because I could do less and less and only suffered more and more from paralyses, coercion cog and I got worse and worse.
By the way the demand from the rehab-specialist was that I could sit up at least 3 times a day for 5 minutes and if I wasn't able to do this than I couldn't be admitted. Also to this demand I couldn't suffice, because within a few minutes I would faint and then couldn't talk or move for hours. The rehab-specialist also caused me chronic mucilage grant membrane lighting in both my hips during the exam.
So my answer to rehab was well thought about and taken with help of experts (physiotherapist and gp). Of course you don't find all this in the dossiers from RIO.
During the hearing RIO did admit though that they were forgotten to count hours for preparing my meals. Normally Henk always did this and because he is gone someone else has to do this and this they were forgotten… conclusion: I get an half hour a day for preparing meals, well that's at least something.

Thursday 11 October was the legal suit. I have appealed for temporary care at the court, because my objection from the beginning of this year against the decision from RIO about my PGB still is not finished and decided yet and this time I really can't wait that long because 15 December is the end of Private Nursing and by that time there actually should be arranged something decent as for personal care/nursing.
Again my team leader and my father went for me, this time to the court. Of course RIO again started about psychic, but what seams… the judge doesn't stand behind this, she thinks that ME is a PHYSICAL disease!!! Really I was really surprised as I heard this later on from my father and team leader… should it now finally all come okay… finally justice?!
RIO gets a week to come with a decent proposal.
RIO asks my team leader a schedule of my care moments, which she together with the other nurses formulates. I type it in my computer and print it out and my father personally delivers the letter. The team of nurses by the way came at a minimal of 6.5 hours professional care a day, that's something else then those 1.48 hours of care a day from RIO!!!
Wednesday 1 December the judge will with his judgement about the proposal of RIO.

November 2004 part 1

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