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Today, 20 November, there was a letter from RIO at the mail… a copy of the letter they had sent to the court… their decision.
My parents were still at my place and they let my team leader read the letter out loud (I was still upstairs in my bed so I wasn't there). All three were shocked from the letter and they were very disappointed and my team leader also felt deeply offended, because RIO raised that she is lying! Really it is true, my team leader would lie according to RIO !! Their decision has actually stayed the same, except for those 3,5 hours a week for preparing meals which they had forgotten!!! Those hours for preparing food by the way are counted as household instead of care.
Around 13.30h my team leader carefully came to wake me up (considering my severe reaction to stimulants like light and sound) and told me about the letter from RIO . Honestly said I even didn't get angry like usual, rather despondent, I had somewhere, however, expected it, I fight already 4 years against the RIO... yak what am I tired of fighting all the time, I have fought already since 1998 against organisation such as the RIO, Home care, health insurance etc., I really have more than enough it! Everything what you say will be distorted and used against you or they simply ignore what you say.
I still haven't heard anything yet from CVZ whether or not I am approved for fokus apartment. For me is certain, however, that if I am not approved for Fokus and if RIO keeps refusing, that it then ends for me. Living with my parents is not an option due to several reasons which I don't want to mention here and so there is nothing left… at least, I don't know anything anymore. If someone should now a solution then I really would like to hear it, because I preferable stay alive but I really don't know how to do that being fully bedridden with 1.48 hours of care a day… yes, I am desperate and sick and exhausted of fighting.

Somewhere around 12 November I by the way finally got another wheelchair for upstairs. The wheelchair upstairs is a push-wheelchair and so without hoops to move yourself, so there always has to be someone to push me in my wheelchair from bed to stair lift and the other way around or on a ‘better' day to bring me to the toilet/bath room. Before Henk always did this, but he is gone. Problem is however that the doors upstairs are very small and so the wheelchairs has to be even smaller to get through and the hallway upstairs is also very small and so the foot support also has to be removed otherwise is taking the turn impossible. So Kersten (the rehab shop) had to look for a real small wheelchair, which also shouldn't be too small for me to sit in (luckily I am not too heavy at this moment with me probably being around 50- 55 kilo ) and which has a very short turn circle. Finally they have found 1, but the hoops had to be removed and so I have to move myself by moving the wheels itself. It is doable, but I have to watch out that I don't get stuck between the spokes (correct English?) each time when I have to slow down. The doorsteps upstairs are a bit high despite the ramp made by the contractor due to WVG-adjustments (this also was only misery back then with that contractor, you can read about this at ‘Special moments - Misery with WVG-adjustments').
Well that wheelchair is in my bedroom, also at night when I sleep (or at least try to). Since that thing was there I already felt funny; more exhausted, pretty sick, bursting headache, severe throat pain, absolutely not able to sleep and if I sleep each time very vivid nightmares, pretty out of breath etc. After several days I suddenly came to the idea ‘maybe it's that new wheelchair and so my MCS and not the ME', it namely was brand new, it smelt, it seemed as is I smelt something of tar. So the wheelchair from my bedroom and into the bath room and yes all my complaints got less. So I called Kersten the next day and asked if they didn't had the same wheelchair in their depot but then several months or years old. No they hadn't, but she would call other establishments and yes a bit later she called back that she had found 1 and that it would be delivered the next day. However some parts have to be replaced and so they would be new again, but I could try it and if it still would make me sick I had to call her again. Unfortunately it were among others the rubber wheels who had to be replaced, but well I'll try it for several days or a week and else I will call again. Really nice though that they fixed it this quick. What is less though is that it took months before I finally got another wheelchair, but it appears that WVG has forgotten to pass it on to them (once again); somewhere in August I namely had called WVG to tell them about my new situation and so also my problem upstairs with the wheelchair and only since half November I have got a different wheelchair.

Since a few weeks they are building a garage, making a terrace etc at someone across my house. Luckily only in the weekends, but unfortunately each time with a lot of noise and that's just 1 of the stimulants I can't tolerate. So also a few days ago, I startled awake around 11.00h. They were working with a machine which pushes all the sand real hard together so it gets firm. Of course this machine made a lot of noise, but not only this, it also trembled through till in my bed and this caused me more pain. Except for that machine they were also working with a machine that cuts metal or something. So a lot of noise and so I again suffered from the (for me) normal complaints with noise sensitivity such as heart rhythm impairments, extremely dizzy, disorientation, feeling sick as a dog, heavy sweating, bursting headache, conscience descending and paralysis. After a few hours it all started getting a bit better till my father came in at 13.30h to wake me up; he immediately put on the lights and said loud ‘wake up, come on wake up, I had to wake you from mom, hop get out of bed' with the result that I again fully crashed. The whole day I felt really sick as a dog (despite domperidon, for sickness, I couldn't eat and almost had to vomit), I was completely exhausted, had even worse muscle weakness then normal and I even couldn't talk for hours… at least my voice was so soft that my parents barely heard and understood me and it also was pretty unintelligible and in no good Dutch. For days I have had more trouble with light and noise then normal and also the pain and exhaustion was worse then normal.

November 2004 part 2

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