Yesterday I had a meeting with the social help, household help and autism assistance. We came to conclusion that I get a helper for household for 2h per week (which I find a bit less since for grocery shopping you need already an hour) and a testing period with the autism assistance to see how much and what support I need. So far so good. What has bothered me a lot during the conversation, is that they always said I should do this autism specific therapy to “remedy the social consequences of autism” and to “learn structures”. Well, I don’t need that! I can do plan things very fine. I just can’t do my household because of chronic pain! The guy from social help then said “Well, then you are wrong here because this would be a case for care.” Oh come on! Don’t pretend this is the first time you heard me saying this! From the first day when I made the application for ambulant assisted living I very clearly communicated what kind of help I do need! Even my therapist wrote a report what we have worked together and that selfcare, structures are not my problem!
About to “remedy the social consequences of autism”, it would be nice if you would listen to the actual autistic person! I told them several times that I do not want and need “more social contacts”. I am happy as the way it is. Their argument: 3 people say something different. They stick on the report from the (incompetend) doctor from social psychiatric service and the report from MDK and the last person from “help for care”. Again, listen to the actual autistic person! It might be that you as neurotypicals need a circle of friends and daily social contact, but that doesn’t mean that it will work for me too.
I’ve always been a loner. Since I was in kindergarden I never had desire and intentions to connect with other children and make friends. I was more happy to play alone; read a book or do a puzzle. 10 years ago I do had a circle of friends and it got so bad that one day I collapsed and vomitted. Just because of the overwhelming social stress. That was when I cut everyone out of my life. It was an act of selfcare. But people don’t understand it. In the past I got misdiagnosed with social phobia and was called an asshole and arrogant by so called friends, because of my loner behaviour.
I don’t have social phobia. I’m not afraid to go out and meet people. I find it super strenous, stressful and exhausting. Yesterday we were 5 people, including me and my mum, and talked for 30 minutes. In the end of the talk, I felt how my brain was shutting down. It got more and more strenous to follow and process the conversation and I got semiverbal so I only responded with “yes” and “no”. When I was back home I slept for 2h to recover from it. People are so draining. They literally suck my energy off very quickly. I’ve always been a person who has a need for a huge amount of alone time. It is perfectly satsfying for me to only meet my friends in person 1-2 times a year for a few hours. The rest of the time I love being home alone. It sucks and makes me sad and mad that neurotypicals don’t understand that I do not have the same huge desire to spend time with social contacts like they do. And I find it quite cross-border like to say that I have to need it like other people. It’s a shame that being an introvert and loner here is still seen as form of menatl illness. I do not need a cure. Or to “go out more and doing stuff with friends”. It’s exhausting and literally makes me physical sick. It also is poison for my tumour disease. Because stress makes it get worse.
I remember years ago when I had to go to the psychologist to get my invalid pension. She asked me if I “don’t get bored” if I’m staying home all day. I looked at her and said “I don’t understand the question.” I still don’t. Why should I get bored? I have enough to do here and am happy with my computer, books and TV. Why don’t people get this that I am happy being a loner?!
Autismus ist keine Krankheit. – http://wp.me/p6TZTP-1k
Once again an account sent me a comment to buy illegal Cannabis and Tilidin! Those drugs are now legal in Germany but they fall under the BtMG (Betäubungsmittelgesetz)! That means that they are only allowed to prescribe via specific doctors and have to be ordered at the drug store. To sell those drugs without prescription is illegal and very dangerous! Please, do not buy your drugs illegal! Especially if you are chronic pain patient. You don’t know what’s inside in those pills and they can damage you badly and irresponsible! If I get anymore such comments where I get suggested to go to a link to buy drugs illegal, I will report you! This shit is not ok!
For about 2 weeks now I experience a pulling inflamed pain and cramps in my abdomen. It feels similar to menstrual pain. Since I’m not dealing with this shit anymore, I know it’s the tumour. The lymphangioma cysts in my intestine are bleeding again. It would also explain why I’m so heavily tired, weak and struggle with loss of appetite and nausea again. Last summer I had almost 70kg and now I’m down to 63kg. It must be the stress of the last months… Every time I get stressed out, the lymphangioma reacts to it. It starts growing, bleeding and I get more vulnerable for infects. 2 days ago I was at the hairdresser. Just that nothing more. And in the evening I got already a sore throat and nauseaous stomach cramps. Yesterday I spent the whole day in bed, and even today I still was mostly in bed because I felt too weak to get up. Fatigue syndrome. Caused by the bleeding cysts. Unfortunately I can’t do anything to help it. It’s 11pm here and I’m drinking a tea for stomach and intestine troubles. I also took one more of my Tilidin pills to at least keep the neuropathical pain under control. I hope I am able to sleep later.
A very tired and done-with-life
P.S. In Germany Cannabis just got legalized and I hope I soon can try it out if it helps me with the symptoms of the lymphangiom flare.
“Why do you care?
What does it matter
if we’re going to die
And I have to listen;
If I want to,
5.2.17 © LJ Meindl
… I have those moments again where I have the feeling that no one understands me. When I talk, discuss with people, they somehow always interpret things into my words that I never said. NT’s (neurotypical people) get harder and harder to understand for me the older I get. One must think, it should get easier after time, ’cause I learnt how socializing works. But it seems that’s not the case. Instead I get even more confused about social interactions and start to wonder why the hell I’m still bothering with this. Lately I think more often about the time 10-12 years ago when I cut off my complete local friends system. I did it because I had a severe burn-out. Those ‘friends’ never understood me or cared about me. They got mad at me for not contacting them every few days, or when I had to cancel invitations. It is not my fault that I doesn’t need that much social contact. I’m perfectly fine staying weeks long all alone. But, the human being is (unfortunately) a social creature, so no matter what, we still try to get social with other human beings once in a while. Sometimes I wish I could get rid off this need…
That I’m still fighting to get my assistance doesn’t help the depression either. The social help thinks that because of my severe disabilities I need the support from a nursing service. Problematic is, that those first, mostly have no clue about autistic people, and secondly, would only do things like help with washing and dressing up. This are things I can do alone. I need a support who does grocery shopping for me, helps me in household and comes with me to doctors and offices. Actually this falls under the social help, ambulant assisted living. But, ambulant assisted living would be only approved for a limited period because it’s for people who should learn to do this things alone.
So this is upsetting me much as well. This struggle now goes for over half a year and it seems that there’s no end coming soon.
Everything gets harder every day. For what do I keep fighting? Why am I still bother to stay alive? I don’t have anything to live for. It feels like I’m just staying alive for those people who love me, what are not much. I’m just so done with this fucking world and life…