Back

During the night I had to vomit several times and also had to sit on the commode-chair due to diarrhoea and I was still shaking heavenly with every little movement. This was Tuesday 27 April. Thursday they came to draw some blood for cholesterol and stuff. Of course that lady was wearing a lot of perfume. So Henk immediately opened all the windows and gave me my mcs-mask, but as I told before it didn’t help much and so I got even more sick then I already was.
Luckily drawing blood doesn’t take long and so she left real soon, but oh boy it took forever till the perfume-smell was finally gone. Luckily I felt a bit better on Friday and so I could have my cats upstairs for a few hours. Oh how I missed them and not only I missed them, they had missed me too apparently. Luckily I also could work a bit on my laptop again and have the tv on and the blinds a tiny bit open so I bit light could come in. However I was still too sick and exhausted to go downstairs and so I stayed upstairs. Meanwhile Henk slept in another room for some days now, because I get very very nauseous and have to vomit of his turning in bed. Sunday my parents came and 1 by 1 they came upstairs for a few minutes. My mom also cleaned my bed, because I were too sick/nauseous for this the past week. I sweat enormously and so I really needed clean sheets… it feels so good a fresh bed.
Wednesday (meanwhile one week upstairs with little light and a minimum of sound) my mom put a sheet in bed to protect the mattress (between mattress and slats bottom (correct translation?)). It was an old sheet and so I thought it would be okay. Unfortunately I got sick again; again vomiting, diarrhoea, fever, shudders (I even were shivering from the fever) and also shaking/ trembling got worse again. Thursday I still were pretty sick and felt miserable. Meanwhile I kept smelling some kind of ‘stench’, some kind of hospital-smell. Then at night I suddenly remembered the sheet to protect the mattress and so the next day I immediately let it remove by Henk. First the stench got worse, but after a couple of hours it got less as did my complaints. Apparently it contained something chemical which provoked my MCS-complaints. According to my carer those old sheets should contain glass fibre. I don’t know if this is true, but if so I am not surprised of my reaction. Of course this fuzz has also caused a ME-relapse again and so I were upstairs even longer.

May 25 we got a phone call from RIO. We are working on rent subsidy and now VROM wants an explanation that I really need care. I don’t know if you guys know rent subsidy and if it’s the correct translation, so I will try to explain it. Here in Holland when you have less then a certain income you can ask for help paying your rent (it’s also depending on the amount of your rent). If you fall in the group of people who get rent subsidy, you still pay the full rent to your landlord but every month you get a certain amount of money (depending on your income and your rent) from VROM on you banc account. Anyway my spd-consultant is working on this and so he asked for the papers at WVG, RIO and VROM. WVG is where you have to be for stuff like a wheelchair, power chair, second toilet in your house etc. About every community has his own WVG. The government has made up some rules, but every community decides for itself who to grant a wheelchair and who not. Where I live I am lucky, they are very easy, but there are WVG’s where you as a ME-patient won’t get anything because your disease is not provable.
RIO says that there is no care-situation. The women from RIO who said this thinks that if Henk would be gone for some reason (end of relation, passing away) that I can still live at home on my own with help of PGB. She doesn’t realize that Henk is busy with me all day long and that if he wants to go out for some hours we have to look for a baby-sit for me. At the moment I have 20 hours of care a week (including hours for household), so that’s about 3 hours a day. Should Henk drop out, I should have enough care with those 3 hours a day according to RIO and for the rest of the day I just have to see how to manage. As I said that I needed help with peeing, pooing, eating and stuff she said ‘do those things on regular times’. As if I can pee or poo on a regular time, say every Monday and Friday at 1 o’clock! Often even eating isn’t possible on regular times, because I am too nauseous to eat or too exhausted or woken up later then ‘normally’ etc.
So now we have to pass this on to my spd-consultant and then depending on what WVG says (RIO only advices) we maybe have to appeal.
We asked her if she knows something from the hearing and it appeared that also this was decided negative. That decision will now be sent to CVZ and they decide if they agree with RIO or not. Then they sent their decision to RIO and then I will get the decision on paper. If CVZ should agree with RIO then I again have to (can) appeal or something.
Here in Holland you really get nuts of all the appeals you must hand in, especially if you have a disease like ME, FM or MCS and this while you have a right to have stuff like a wheelchair, enough care etc. and people with for example MS, cancer etc have much less trouble with their requests.
I absolutely don’t want to discriminate, but if you have an accepted disease they understand and believe you and you have less trouble with requests. When having an accepted disease they also offer you psychic help while with a not-accepted disease they don’t, but if you ask for it they say ‘you see, it is psychic’.

May 2004 part 2

Next

Sitemap