Was mich am meisten daran nervt, chronisch krank zu sein, ist das Fatigue Syndrom auch chronisches Erschöpfungssyndrom genannt. Besonders nach heftigen Schmerzepisoden, die sich über Tage hinweg zogen, kommt es sehr häufig. Die letzten 3 Tage war wieder schlimm. Ich konnte kaum laufen und schlafen. Vorgestern benötigte ich 300mg Tilidin was weit über meiner Normaldosis ist. Aber ich hätte sonst absolut nicht schlafen können. Leider bekomm ich von den Medis oft Alpträume. Sowas wie erholsamer Schlaf habe ich nie gekannt, auch nicht in der Kindheit. Für mich ist das ein Mythos.
Gestern bin ich mal wieder einkaufen gewesen. 3km Fußmarsch bei Schmerzlevel 8. Ich habe mir Blumen für meinen Balkon ausgesucht; das wollte ich selbst machen. Sonst lass ich lieber für mich einkaufen, weil ich die Strecke und den Stress beim Einkaufen durch Reizüberflutung nicht schaffe. Mittlerweile habe ich ja zum Glück eine Einkaufshilfe.
Jetzt hab ich das Problem, mit dem Fatigue Syndrom und das ich mich nicht absolut nicht konzentrieren kann. Brain Fog. Jeder Gedanke fühlt sich zäh an, wie dickflüssiger Sirup. Es ist unglaublich schwer einen vernünftigen Satz zusammen zu kriegen. Deshalb überlege ich jetzt ob ich mir Ohropax reinmache und mich hinlege. Bin heute absolut nicht funktionstüchtig.
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
So I decided to make new pages only for the crowdfunding for the service dog. You can now follow, like and share on Facebook and Instagram! When I’ve reached the first goal, and have adopted a puppy, I will post regularly updates about our life and training there 🙂 I will post in german and english.
Service Dog For Luka (Facebook)
Service Dog For Luka (Instagram)
You still can doante here: Leetchi Crowdfunding and the text is now also in english, you must scroll down.
So, in my last blog post I told you that I was thinking about to fet a service dog. Today someone came for a consultation appointment. He told me many many stuff that I still have to process. But it was very nice and positive. He said that nothing speaks against for a service dog. He also liked that I live at a forest so I don’t need to walk far to let the dog go run.
On the weekend he will send me a cost estimate for the dog and the training. He said it will be between 6000€-14000€. That’s a lot of money! Especially for me as someone who gets invalid pension. So I’m thinking about to make a crowdfunding on leetchi or something. Also I can try to contact sponsores.
If you want to support me already (I need money for medications) you can send me some via PayPal. Every Euro helps!
You can also buy my book “Black & White” : Amazon or from Epubli.
I really hope I can get the money together so I can soon get my service dog 🙂
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.
Why don’t you see me?
I’m standing right next to you.
But you talk with your friends
and I am out.
It’s like, I’m invisible.
People see through me;
Pretend, I’m not there.
What can I do,
to be seen and heard?
Your affection never last long.
If you meet someone else,
I am forgotten.
Do I even mean anything to you?
It’s like, I’m invisible.
People see through me;
Pretend, I’m not there.
What can I do,
to be included?
Always I’m left out;
Why? I don’t know.
I just want to belong.
© LJ Meindl 11.07.17 All rights reserved.
This post is kinda an addition to the one I wrote yesterday. The trigger for it was that a friend unfollowed me on instagram. Which is not his blame but it does triggers many things for me.
Ever since when a friend has left me again, I felt like it was my blame. I wasn’t interesting enough, haven’t showed enough what friend meant to me, haven’t shown enough interest in their lives or whatever.
Yesterday I fell in a dark hole again because of this. I feel worthless, boring, just not enough and that no one wants to be my friend anyway. The tactic I taught myself to cope with this: build a wall and be like “Okay, then I don’t want you either. I don’t need you.”
It’s hard for me to trust. Where shall I know that friend is serious with me? I always assume the worst. I was hurt too often.
I always feel like I have to give something special to make someone wanting to be my friend. And I don’t have anything. I can understand it; I am boring. I’m weird autistic and due to my chronic illness, my life is not special or interesting. Why should anyone wants to be friends with me?
I feel like, I want to give up on friendships. To only use social media now to promote my poetry and books. And not any further connections. Because why should I keep trying and getting hurt, when I can’t hold friends anyway?
I know, I actually should work this, but at the moment I don’t see a reason why. What sense does it make? Well, tomorrow I’m at my therapist again. I will talk with him about it.
(It seems I don’t even have spoons to talk about it properly.)