There has happened a lot. To start with I first want to tell that I actually wanted to update my website in December together with a Christmas wish. The first week of December I also had the update ready, but it was so negative that I didn't want to put it on the internet because from nature I am not that negative. Back then however I totally had it, on 7 or 8 December I even almost committed suicide. A few days later I decided to take some time-off and so I didn't work on my website anymore and I also went on no-mail at some Dutch lists. I meanwhile had worsened already; mentally I was slowly doing better (in opposite to the last sentence on the previous page I did make my 34 th birthday on January 15). This also because just then there was a mailing at ME-CFIDS-CFS_SEVEREies_United (only for the very severe ME-patients) with the question if you can or can not die from severe ME. Thanks to this mailing it came clear to me that I actually don't want to be death at all! I just DON'T want those DAMN disease plus everything you get for free with it! I am just too nosy at my future life. Who knows I will improve somewhat later on or maybe they find THE medicine for ME and who knows who and what will come at my path. In short; I am way too nosy to die *LOL*
Physically however I keep worsening. Well it's no wonder when you have to keep going over your limits for months because you have to arrange everything by yourself like appeal against RIO, charge someone for the hearing, put the phone bills on your name, the same for your rent etc., then as ME-patients you will have to pay for this some day. I have paid for it several times already in between, but because each time there was something else that had to be arranged I had no time to really pay it off and so each time I got again an adrenalin-rush. Now that I have finally real rest, there is no need anymore for an adrenalin-rush isn't and so you/I crash… and severely I can say. Slowly but surely I detoriated back to the level of past summer and eventually I could barely be awake 3 hours a day. In those 3 hours I could barely do something; with some luck I could work on my computer for 15 minutes and for the rest I just lay there staring in front of me with my eyes open or closed if I couldn't keep them open. Also talking was hard again and my voice volume very soft. I don't want to say that I am doing a bit better again cause actually it still isn't better physically (I even suspect that this will take many more months before I will be on the level of before all this fuzz), but unfortunately my adrenalin has to run again. On the next pages you will read why.
Well what has happened despite all that sleeping?
At the beginning of December I got the TV back and so I could watch some TV again.
Wednesday 1 December I could phone the judge for his decision concerning my request for temporary care. They told me that my appeal was approved, but I didn't know what they meant by that because RIO had made a proposal which I didn't agree to. So she checked if she could see what was written, because it was already finished to post. It appears that household care is raised to class D (= max. 12.9 hours a week). But this I already knew, because during the hearing at their place they already had admitted they had made an mistake and that they had forgotten to calculate a half hour a day for preparing meals. So this was nothing new. Then the personal care: this stays the same (class D = max. 12.9 hours a week = 1.48 hours a day).
In short: it didn't bring me much, except that it has cost me a lot of energy and give me back a lot of stress, frustration and angriness.
This decision (class D for household care and class D for personal care = total minimal 20 till maximum 25.8 hours PGB a week) has with retroactive effect entered as from 1 September for the duration of a half year. On 1 March this decision will be expired and so I meanwhile again have requested to be retested (you have to call for this at least 6 weeks before the decision will expire). This time I had to request it at CIZ because RIO has changed the name. My gp already said 'that's an easy way to get rid of your bad name' *LOL*
Tuesday February 15 at 13.00 hours they will come to retest me; 2 women of which one is THE physician.
The 3 months period of Private Nursing which for me is being paid by someone else are meanwhile over. I kept 1 of the 3 nurses and she now works as a freelancer for me (my PGB). Together with a colleague she has started her own Private Nursing Agency here in the Netherlands. Till now she is the only one who works for me, but as soon as we know what the new decision of RIO/CIZ will be and it is positive than I will hire at least one more freelancer and she will work for me through Zorg Holisme. Till now my parents help a few days a week for some hours, but the meaning is that this will be 0. My parents are gone since Friday December 17 and now only come on the days Josette (that's the name of my PGB-nurse) isn't here. They then come for a few hours to help me out of bed into my hospital bed downstairs, give me some food and help me back to my bed upstairs. As long as I am not able to stay awake long enough there is no problem, however if I am able to stay awake long enough I have a problem as for going to bed upstairs because then no one is here to help me. And for among this kind of problems I need a second person who comes to help me upstairs to bed at night and of course also for the days Josette isn't here.
There are by the way different reasons why I sleep at night upstairs and am during the day downstairs in the hospital bed. Among others because downstairs it is already light real early in the morning (no blinds) and I can't tolerate light and noise really well so early in the morning. Besides I also sleep bad and I can wake up from the least noise or light (despite eye mask and earplugs). Then there is also the problem that Josette/my parents already is/are here before I am awake and able to tolerate noise and stuff. This way there also can be cleaned and vacuumed without that me having trouble from it (dust, smell and noise). If I namely are exposed to for example light and noise while my body isn't awake enough then this means a very bad day for me with on that day and the following days even more sensitivity to light and noise. A quiet start of the day (waking up quietly (for example no noise and light) and waiting till my body works again (among others being able to move and talk again)) is very important to me.
