..and as usual, much has happened.
The move and all the bureaucracy it entailed, as well as the awkward Course times were too much for me. I wake up naturally at 6 in the morning, then used to do my exercises/1.5 hour Routine when I still had energy.. but having to get up at 5 to be on the Course at 7 completely messed up my sleeping rhythm. I couldnt sleep anymore, at least I used to wake up at 2 and that was it.
As had to be exspected, a classroom full of Afhgan refugees with questionable views on women ("women arent worth as much as men" being one of the verbatim quotes here..) wasnt exactly making me feel at ease. The rest of the class was ok, 2 nerds, one bitchy woman, a lot of former car mechanics or the like. The place was gloomy.. dark, dirty, some really bad teachers (I called one of them Mr. Psycho.. a sociopathic character at its best).. no way to find something remotely healthy to eat and taking Food with me resp. preparing it beforehand was impossible due to all the appointments I had before, in between and after the Course hours.
It was a mess.. my counselor hadnt booked me into the Course properly when I arrived on the 2nd, the jobcenter froze my benefits as a result of that.. etc. etc. etc. All not good.
Within the past month I had 2 fairly classic MCAS episodes and am now home with a throat infection. Somewhere amidst all this madness, I quit the Course. Somehere in between, too, I experienced my 4th anaphylaxis. I read up on the medical definitions since I lacked ways to explain it to the doctors, and so far I have had two at stage 3 and 2 stage 2. stage 4 would be an actual anaphylactic shock.
The 4th one was quite different than the others, though. When you almost suffocate and your whole Body cramps up, I still felt vital, aggressive and kept on fighting it. But this time, I was really weak, and had had hot flushes for a couple of days. It felt like my heart would stop beating. Like my Body had finally used all its resources and didnt put up a fight anymore. I thought this was it.
I spent the rest of that day making my peace with this world. What is good though is that now I do not have to be superwoman anymore.. and I find words for whatever is happeneing to me at a given time.
Since I do not get help here with my MCAS, I have written to some qualified doctors abroad. Let's hope they respond and give me an appointment. I am willing to travel to them and pay to get another diagnosis from a valid source, and hopefully some backing. Which I will Need because next week, the jocenter will try to shift me to the health fund, and I might have an appointment with a doctor there. And, trust me, those "doctors"- at least most of them- do not give a rats ass about a Patient with a strange, fairly new disease that is still being regarded as a rare disease. At least around here.
Abroad they do know that the numbers of People afflicted with it are on the uprise. Here, most dont even know what MCAS stands for.
The move and all the bureaucracy it entailed, as well as the awkward Course times were too much for me. I wake up naturally at 6 in the morning, then used to do my exercises/1.5 hour Routine when I still had energy.. but having to get up at 5 to be on the Course at 7 completely messed up my sleeping rhythm. I couldnt sleep anymore, at least I used to wake up at 2 and that was it.
As had to be exspected, a classroom full of Afhgan refugees with questionable views on women ("women arent worth as much as men" being one of the verbatim quotes here..) wasnt exactly making me feel at ease. The rest of the class was ok, 2 nerds, one bitchy woman, a lot of former car mechanics or the like. The place was gloomy.. dark, dirty, some really bad teachers (I called one of them Mr. Psycho.. a sociopathic character at its best).. no way to find something remotely healthy to eat and taking Food with me resp. preparing it beforehand was impossible due to all the appointments I had before, in between and after the Course hours.
It was a mess.. my counselor hadnt booked me into the Course properly when I arrived on the 2nd, the jobcenter froze my benefits as a result of that.. etc. etc. etc. All not good.
Within the past month I had 2 fairly classic MCAS episodes and am now home with a throat infection. Somewhere amidst all this madness, I quit the Course. Somehere in between, too, I experienced my 4th anaphylaxis. I read up on the medical definitions since I lacked ways to explain it to the doctors, and so far I have had two at stage 3 and 2 stage 2. stage 4 would be an actual anaphylactic shock.
The 4th one was quite different than the others, though. When you almost suffocate and your whole Body cramps up, I still felt vital, aggressive and kept on fighting it. But this time, I was really weak, and had had hot flushes for a couple of days. It felt like my heart would stop beating. Like my Body had finally used all its resources and didnt put up a fight anymore. I thought this was it.
I spent the rest of that day making my peace with this world. What is good though is that now I do not have to be superwoman anymore.. and I find words for whatever is happeneing to me at a given time.
Since I do not get help here with my MCAS, I have written to some qualified doctors abroad. Let's hope they respond and give me an appointment. I am willing to travel to them and pay to get another diagnosis from a valid source, and hopefully some backing. Which I will Need because next week, the jocenter will try to shift me to the health fund, and I might have an appointment with a doctor there. And, trust me, those "doctors"- at least most of them- do not give a rats ass about a Patient with a strange, fairly new disease that is still being regarded as a rare disease. At least around here.
Abroad they do know that the numbers of People afflicted with it are on the uprise. Here, most dont even know what MCAS stands for.
