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As you maybe can remember I were examined by RIO end last year for my pgb-contract. Partially I have satisfied about it, but also not. As for care I now have more hours, but for household I have less hours. The reason for this is that I can use Meals On Wheels or (frozen) ready meals. However due to my many food allergies and especially my allergy for tap water this is not an option to me and so I did appeal. I got a nice letter from dr. Tisscher in which he explains why Meals On Wheels or ready meals are no good for me.
Meanwhile the hearing has taken place in April. Of course I couldn’t be there and so my mom (she cooks for me) and Henk were there. Both had the feeling as if they were some criminals who were being judged. They sat across 6 people of the hearing of which 2 understood the situation.
Henk got only 3 question, because he got angry each time… this because they kept saying stuff like ‘it is all in her head’. There were 2 pushing towards admittance on a psychiatric ward.
I haven’t heard anything yet, but considering the above I doubt I have a chance.

I had asked my health insurance for a voice amplifier and what do you think… they approved!!!! They asked for the hospital papers from 1999 in which it says I do have voice problems. We asked for those papers at the hospital and luckily that specialist did make a report. I doubt btw that they would have approved a voice amplifier if I didn’t had that report. I am curious how it will be with a voice amplifier. Hopefully I can then make a phone-call once in a while and stuff.
I do regret tho that no one has ever told me about a voice amplifier before, at last I do have voice problems since 1998. It is a pitty that you have to find out everything yourself here in the Netherlands, but hey I get 1 and that’s the most important.

Now I am going to try to get a face mask from my health insurance, because I get more and more trouble with my MCS. Meanwhile I react to almost everything and I am not even save anymore in my own house from chemicals of for example people walking by with perfume on. We can’t even vent due to all those chemicals outside and it will be even getting worse in summer; people hanging the laundry outside, doors open while cleaning the house, neighbours sitting outside with perfume and smoking, odours of paint etc.
I do have a so-called air-supply, a mcs-mask with active coal filter and 2 ionisators/air cleaners, but unfortunately it’s not sufficient enough. It never did that much that I didn’t get a reaction, but it reduced the reaction a bit… unfortunately not anymore.
A face mask is some kind of a helmet with a hose which is connected to a motor unit with several filters. It will probably not be very comfy in bed, but it will protect me from chemicals. And of course I do hope that when I some day hopefully have improved enough I can go outside with my electrical decline wheelchair (power chair) and who knows I can visit my parents again or go to a zoo or stuff.

I have not much luck lately and so I have a big crash again.
First my brand of multivitamins (Klaire Laboratories) isn’t available anymore and so I had to search for another one. On advice of someone else I tried the brand Plantina, but unfortunately I react on it with more pain and apparently more muscle weakness. I first thought it was due to ME and that I maybe had overdone it, but not. Since then I unfortunately can’t walk anymore at all or stand for a few seconds, before I could walk 2-3 meters but now I can’t anymore. By the way the company Plantina was so friendly to sent me some tablets for free so I could try before buying considering my many allergies.
After that something private happened where I rather not want to talk about… sorry. After 2 weeks as I was a bit recovered from this I really wanted to go outside once more… it would be the last day with nice weather for some time. So Henk rolled me in my wheelchair outside and within 5 minutes I were back in my bed. I did knew I would get a relapse from this, because sitting is for me past my limits but such a big crash I really hadn’t suspected. Not long after I was back in, I got really severely nauseous and had the feeling I had to vomit. I was shaking all over my body due to exhaustion and of course I have to go to the toilet at such an impossible moment and yep… diarrhoea. I always have constipation with false diarrhoea (after the constipation is diarrhoea), I only suffer from diarrhoea when I have an allergic reaction so I already found it weird. I was just back in bed as I started to vomit. Because I hadn’t eaten yet it only was bile. I also never vomit except when having a severe allergic reaction, so also this was weird. As I were 5-6 years old I was pretty sick and vomited a lot, since then I only seldom vomit (by the way it was probably back then as my ME started). I closed my eyes for some hours in the hope I would feel better, but not. I was so severely nauseous that I couldn’t tolerate anything around me anymore, no light, no noise, not even my cats and so Henk brought me upstairs. For years now I can’t tolerate (much) light and sound/noise, but now it really was very extreme.

May 2004 part 1

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