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The next day, Thursday 23 May at 11.15 hours, two ladies came to check me – I have asked more nursing hours and so they came to check if I really need them. First of all 11.15 hours is much too early for me, my time is around 13.00-14.00 hours and second it was of course busier because they were with 2.
Anyway I had an epileptic seizure while they were here. According to Henk it probably started around 12.00 hours. Both ladies also were wearing a lot of perfume and due to MCS I can’t stand this, so this could be also a cause for that attack. Both ladies have seen the attack and hopefully they now think different and will give me more hours. According to Henk they said as I was having this seizure that a nursing home with rehabilitation would be something for me. Henk luckily doesn’t think so and he said that they should call our gp – he thinks the same as us about a nursing home and rehabilitation. Till now I have tried physiotherapy twice and both times I only got worse of it even though we tried to stay within my limits. It’s due to physiotherapy that my limits got lower and lower. Anyhow due to that epileptic seizure I could eat for the first time that day at 22.00 hours – not by myself, Henk had to feed me. Around 23.30 hours finally my arms worked a bit. As I had to go to the toilet at 03.00 hours that night I noticed that my legs still didn’t work properly! So this time it has taken a long time before I could move ‘normal’ again, normally it takes about 6 to 8 hours and now minimal 15 hours!! If this is due to yesterday that I had such a weird day??
Anyhow I still don’t feel okay today, Sunday 26 May - I am extremely exhausted and I hate that weird feeling in my head. Maybe I should call my gp tomorrow?
 
It’s now Friday 31 May and I finally feel well enough to update my site.
Past Monday, 27 May, I thought that that strange feeling finally was gone, however after I was awake for about 1 to 2 hours it started again, luckily this time less heavy. I then have decided together with Henk that I will not use the medicinal cannabis anymore for a couple of days. Not because I think that this causes it, but because it maybe will have some influence on it. So Sunday night I have had the last marijuana. On Tuesday I had contact about this with my gp by telephone and he also thinks it’s a good idea to quit for a while with the marijuana and see what happens.
Well, I have felt even worse since Tuesday; I was even more exhausted, extremely nauseous, I had a terrible headache, again I suffered a bit from food aversion, I also noticed that again I had pain in my stomach and oesophagus immediately after eating… and so I again didn’t eat much anymore and could do less more than resting and stare at the TV now and then.
Thursday night I started again with the medicinal cannabis and today I feel much better already. All the complaints are slowly reducing so that I finally can write this report. So it appears that the marijuana helps me in different ways.
I now first will keep the normal dosage (1x200ml) to see how it goes and if everything goes well I will start Sunday or Monday with 2x200ml. So I raise the dosage 1,5 week later than planned, because on Wednesday as I wanted to raise that weird thing happened to me. For the security I hadn’t had marijuana that day and also not the next day. I am curious how it goes.
 
I have been weight by Henk. How he did it? Actually very simple; first he steps alone on the scale to see how much he weighs, then he took me in his arms and stepped again on the scale. After this you subtract both weighs and now you know how much you weigh… I weigh about 43 kilos. I can tell you that I surely won’t do this a second time… boy that hurts. Well, at least I know now that I have lost 4 kilos since the last time I was on the scale.

On Monday 3 June I have started with taking the medicinal cannabis tea also at noon. By way of precaution I started with 100ml in stead of 200ml. This went without any problem, so on Tuesday I have raised the dosage to 150ml. This also went okay and so I now use since Wednesday 200ml medicinal cannabis tea when I am up and again 200ml before I go to sleep. Of course it is still too early to tell if I notice any difference, but since then I sleep really well. I do wake up a couple of times per hour because I have to turn due to pressure pain, but I now sleep since a couple of days till the next day. I am not awake anymore for hours!
Since I started again with the medicinal cannabis I feel much better as for nausea etc., as for tiredness and pain it’s still the same.

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