Yesterday I had a very strenuous appointment with the social help. To sum it up: we’re still trying to find a company who would help me with the household. But the autism-assistance is working well now. He helps me a lot with promoting my crowdfunding for the service dog. But I’m losing the thread.
Actually I wanted to talk about how strenuous such appointments are for me. I only can have one appointment per week because it’s so exhausting for me. Already going to the supermarket, which is a walk from over 2km, is so hard that I need a 2h sleep straight afterwards. If then I even have an appointment where I have to use public transportation, it’s getting worse. I quickly get an overload, even though I try to shield myself with headphones, listen music, and my sunglasses.
So I come already having an overload to a meeting with 5-6 people to talk about what assistance I need in daily life.
Yesterday I was already dead. But today I still am very exhausted, can only do basic self-care things. Even writing this blog post is a struggle because I feel how tired my brain still is and that it’s difficult for it to function. I think this is called brain fog.
After such events, that are easy peasy for neurotypicals, I need a few days to a week to recover and to be able to fully function again. And yet, people wonder why I don’t have/want local friends and don’t like going out much. That’s why. Also because exhaustion gives me physically symptoms such like nauseous and it increases my chronic pain.
Now I have free time until Tuesday, and I most likely will spend this time in bed.
A very tired and exhausted Luka
Another PTSD thing. So actually I have two different traumas. This one happened to me around 2008.
I wanted to go to see my favourite band HIM. It was my first gig ever and I didn’t want to go alone. So I asked in forum if anyone near to me was going too and if I might join them. Also I mentioned that I was disabled and would need some support.
So I met this girl, I can’t remember her name anymore, at the train station and we went together to the venue. Had to wait an hour or so before the gates opened. So it got more crowdy behind us until we were in the middle of a crowd. Again I mentioned my disability and asked if we could go to the side or let the fans run in first. She refused because she wanted to be in the first row. She told me “to run” when the gates open and I told her again that I was disabled and couldn’t run. Her response: “then just hobble!” I stared at her with open mouth. I couldn’t believe her ignorance! I tried to find a way out of the crowd, but on the ground were empty bottles that fans just had thrown away. Then the gates opened and the horror began. Fans started to run inside, I was pushed, stumbled a few meters before I fell over a fucking bottle and hit the ground. Fans kept running inside, were jumping over me, their feet hit the ground only centimeters away from my face. The only thought that was running through my mind was: “You’re going to die now.” Suddenly I was grabbed and carried to the side, someone helped me up and asked me something. I needed seconds to realize it was the security. I tried to sort my mind and replied to his question if I was okay with “I don’t know.” Maybe he hasn’t heard me or my voice broke, he asked me again. “I think so”. I said this time trying to sound like I mean it. With a last brief look at me, he said: “Then walk slowly.” And I stumbled inside, I found a seat, sat down and began shaking. My whole body was a shake. The security guy hasn’t really checked on me if I was injured. He didn’t even noticed how I had a shock. It seemed like he didn’t care about my safety at all.
I don’t remember anything from the gig anymore. I still have nightmares from this event and before every gig I attend to, I go through the same panic again. I feel sick to my stomach and shake.
Last gigs I wrote emails to the hall managers, asking for safety support, told them this story. From one I didn’t even got a reply. The other one was nice and promised to give me safe place, but when I was there, I felt like the security didn’t take me or my disability serious. I was stared at during the whole gig, saw how one of them talked to the guy at the backstage door that he should watch me and kick me from my place in case another wheelchair user would arrive. The other gig was in Helsinki, and it got so crowdy that I got a panic attack again. I couldn’t breathe, it was hot and felt like I would collaps. I couldn’t really sit because fans were standing on the bench, and standing myself caused me huge pain.
As much as I love going to gigs, I wish organizers and security people would be better educated about disabled people. They only think: disabled=wheelchair user. And that’s very problematic for those of us who don’t use a wheelchair, where you might not be able to tell their disability, and way too often they assume that “it can’t be that bad” or that I’m “not really severe disabled” because I’m a young punk guy with a cane.
Dear concert organizers and security guys, trust me when I say I need a safe place, away from crowd and a seat because I can’t stand for longer time. I’m in no way asking/trying to get “special VIP-treatment” or some shit. I just want to be able to actually enjoy a concert at a safe place!
To be honest, this situations made me question if I will go to a gig ever again. Because I don’t feel safe and I can’t deal with this ableistic shit no more.
My therapist told me to try to visualize the chronic pain. Actually I should draw something, but I’m better in writing. One night I had this inspiration:
Living with chronic pain
Is like this annoying guy that is always there where you are. He follows you around everywhere, is looking over your shoulder, watching everything you do, is standing in your way, pokes your ribs to remind you, he’s still there.
All you want, is some time without him, to rest up, but nope, you turn around, he’s there. You open your eyes, he’s there.
He never leaves, no matter how often you tell him to do so, no matter how often you scream at him.
The chronic pain is always there and never leaves you alone.
That’s how it feels for me.
Vor 2 Wochen habe ich mir eine CBD E-Zigarette für 49,90€ von KanaVape bestellt. (KanaVape) Ich hatte vorher schon 5% CBD Tropfen von Hemptouch probiert. Diese wirkten sehr gut und schnell, allerdings kam ich mit der Dosierung nicht klar. Man sollte 2-3 Tropfen 2-Mal täglich nehmen. Da diese unter die Zunge geträufelt werden sollte, war es schwierig für mich die genaue Dosierung zu treffen. Ich spür da nix 😀 Da das CBD aber sonst so gut wirkte, habe ich mir gedacht, dass ich mit inhalieren besser klarkommen würde. Also den KanaVape bestellt. Lieferung kam schnell und Bezahlung per Überweisung klappte auch. Der KanaVape kam mit einer Patrone, die es in Natur Hanf oder Minze Geschmack gibt und kein Teer oder Tabak enthält!, und mit einem Akku den man per USB aufladen kann. Der Akku soll für 500 Züge reichen, eine Patrone für ca. 200 Züge. Die Nachfüllpatronen sind einfach zu wechseln, da abschraubbar. Kein eintröpfeln von Öl, wie bei manch anderen E-Zigaretten. Das macht es leichter wie Menschen wie mich, die Probleme mit der Feinmotorik haben.
Kleine Überraschung bei der Lieferung: eine Probe von einer Hautsalbe von Hemptouch lag bei 😀 Riecht sehr streng nach Hanf also nicht unbedingt fürs Gesicht geeignet.
Über den Tag verteilt nehm ich immer mal wieder 3-4 Züge. Das CBD schmeckt man nicht wirklich aber es hilft. Schon nach 30min spüre ich wie ich entspannter werde, die Muskeln sich besser entspannen. Vor allem abends hilft es mir beim einschlafen, da ich so gut runter kommen kann. CBD hilft mir bei den entzündlichen Tumorschmerzen im Bauch. In Kombination mit meinem Tilidin wirkt es sehr gut. Ich habe seltener Bauch- und Beinkrämpfe und fühle mich insgesamt entspannter ohne mich zugedröhnt zu fühlen. Für mich funktioniert der KanaVape ganz gut und ich hab mir schon eine Nachfüllpatrone bestellt.
There is nothing else
It surrounds me,
fills me out.
Like a heavy weight,
it lays on me,
and in my veins.
I can’t breathe.
It feels like a fire,
burning my nerves.
There is nothing else
3.10.17 © LJ Meindl All rights reserved.
Sisu is a Finnish concept and cultural construct that is described through a combination of various English terms including stoic determination, grit, bravery, resilience,and hardiness…
Sisu is a grim, gritty, white-knuckle form of courage that is typically presented in situations where success is against the odds.
I died more than once
in this life.
But I got Sisu.
I’ll keep fighting,
For my rights
a life worth living.
The road might be long and hard,
but I know I can make it.
My soul is strong.
Even though my body looks weak.
I got Sisu.
28.09.17 © LJ Meindl All rights reserved.
I think I haven’t told yet that I started to work with M. from autism assistance. We went together to the hairdresser twice, gladly by car so I didn’t had the stress with using public transportation. It went all fine and he was very curious about me being trans, so I explained some things to him. He was asking very respectfully and got it quite good what being transgender means.
Yesterday we were at the hairdresser again and there was a woman with a baby. It was very hot so the baby of course made some noise. M. asked me if I had my stimming cube with me but this time I left it at home because I thought I won’t need it for a quick visit. After the hairdresser we went together for grocery shopping. I needed drinks, packages of water and ricemilk. Since he was with his car, I used the chance. Otherwise I would have to order it online and have to pay delivery costs. So I saved some money. But it was super strenouns day. So back home I slept kinda 2h and went to bed at only 19:30pm.
Next week we meet again and make a plan with all the things I want to do with him. Like going swimming, creating a household plan, trying drumming and so on.
Meanwhile because of my depression caused by feeling helpless and useless when I’m in a bad shape, my therapist suggested I should get myself a dog again. I really do miss having a dog with me and think it’s a pretty good idea. My pain doctor would see it the same way, I think, because he often tells me that I should move more and also go for a walk when I’m actually not feeling so well. It’s a devils circle. When I’m in moderate pain and I actually would like to go out, I immediately think that outside is often stressful for me, that my pain will increase when I walk too much, so I always don’t go out. A dog will break this bad habit, because he *must* go out.
Also problematic for me is that in the last past ten years my walking got worse. I often feel very insecure on my legs, even with cane, especially when little dogs come barking running to me, I fear that they will jump on me or run between my legs or attack my cane. This is huge dangerous scenario for me because this will most likely bring me to fall.
I knew they were service dogs for people with wheelchairs or epilepsie and so on. While researching I discovered mobility service dogs. Those dogs wear a special harness where one can find stability. You can even use this to stand up from seats and to help with taking stairs. Here you can see such a service dog who helps a young girl walk:
Service dog Rocky – child mobility/balance
In this video you can see how a mobility service dog helps in various situations:
Collies for Mobility and Support Assistance
I’m really curious if this would work for me, because it would give me much freedom back. Because of my paralysed leg and that it has happened often that I couldn’t get off a seat in public transportation, and need help to enter and leave train, bus, tram, I only leave my home with my mum. Which is, of course, a not so nice feeling. It makes me feel dependent. Like when it’s a nice day, I’m feeling good and would like to take the bus to a park or shopping centre, I always have to ask if she has time to come with me. Or when I need to spontanously buy food. I can’t go alone because I don’t trust my legs no more.
With a mobility service dog and the special harness it might be possible to do these things alone again. That would be awesome! I would be more idependent, gain self-worth and self-confidence.
I emailed a school for service dogs and am waiting now for a consultation appointment to see if I fit the requirements for a service dog. Unfortunately the training to become a service dog is very expensive and I have to see how to get money. The school says on their homepage that they help with finding sponsors and assist with crowdfunding and so on. I hope it will be possible so it doesn’t stay a dream.