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.
I hate the noise,
I hate the lights,
but music is
what led me here.
I’m longing for to see you
just one more time.
I go through
my personal hell
through the pain and endless darkness
I’ll go through
this personal hell
to feel the fire in my heart
I feel so restless, so fucking scared
but your music makes me
and I’m in heaven.
And, I go through
my personal hell
– through the pain and endless darkness
for you, I’ll go through
this personal hell
to feel the fire in my heart
Dedicated to The 69 Eyes.
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.
I am so tired
Of fighting every day.
keep I fighting?
A few minutes
Being able to write?
I am so tired
Of the daily struggle.
How can I enjoy life,
If all I know is pain?
It determines my life,
Everything I do
And want to do.
My dreams stay dreams
Because of this illness.
I am so tired.
I just want to rest.
24.11.16 © LJ Meindl All rights reserved.
I can’t anymore. The daily pain feels more and more intense, it exhausts me, is tiring. And now there comes kind of fatigue and insomnia to it too. For several weeks I can’t find sleep in the night anymore. Often I try for 2 h to fall asleep and nothing seems to help. Often it is because of pain, I start moving around, trying to find a position that feels halfway comfortable. I tried to comfort myself with taking a hot bath before, had to increase my dosage of Tilidin to 15-20 drops, what is still under the bottom line of dosage, but actually I should not take more than 10 drops my pain doctor suggested. But I can’t stand it anymore! 2 weeks ago my pain was so intense I couldn’t stand up straight anymore and could barely move. Every position hurt, no matter if I was sitting or lying. I took every 6 hours Tilidin, started with 10 and ended up with 20 drops but it didn’t help at all. In the end I was so desperate that I combined it with dolormin extra, which has 684mg Ibuprofen. I know this is not a solution for long time therapy but I couldn’t stand it anymore. I felt like I was dying. And this combination worked so fine, I did it the next night again and woke up almost free of pain for the first time in 20 years. I’m temped to keep taking it together with Tilidin but it’ll probably destroy my already hurt liver.
So I’ve been at the pain doctor a few days ago, but I had the feeling that he didn’t noticed how bad I’m really doing. There plays my autism through and makes it harder for me to show my feelings and emotions how they really are. I felt like he couldn’t help me but giving me a new prescription for Tilidin. At the first appointment, when he heard my story and the severe different pain I experience he asked me if I have tried cannabis. Unfortunately it’s still illegal in Germany. He wanted to prescribe me some but can’t. What fucked up law is this? He suggested to me that I go looking around for anyone who can give me some. I have to become a criminal if I wan’t to get rid of my pain. Because of that I don’t have friends here, it’s not that easy to find someone. And I never had experiences with Cannabis. I don’t know what kind of sort I need, nor how much or how to consume it to get the best effect. My physiotherapist wanted to ask around in her circle of friends if anyone knows how to use it for pain treatment. So far without results. On Tuesday I go to physio again and want to ask if she just can get me anything. I don’t care anymore. I’m willing to try everything now. I’m desperated and I can’t stand the pain anymore. I only want it to end. And I don’t want to keep experimenting with Tilidin; I’ll probably end up like Prince…
Even if the law for medical Cannabis will get legalized, one of the conditions is that you have to tried everything else before. So in my case I wouldn’t get it anyway, because my pain doctor refuses to try out Morphine and Fentanyl, what I also don’t want to. If I get from Tilidin alredy so fucking drugged and sedated, the effect on Morphine and Fentanyl will be even stronger. And I wouldn’t have any improvement in life if the pain might be better but I’m so drugged that I only sleep all day.
All I want is a medication that reduces my chronic pain but keeps me awake, clear enough in mind that I can live my life again. I haven’t left my home for several weeks. Only for appointments. When I get back, I’m so exhausted and in pain that I need rest for several days to recover. And I’m talking about simple things like the weekly grocery shopping. I would love so much to just make it down to the forest in front of my home for a 15min walk. But this is already too much for me. While I’m writing this here, I have inflamed pain in my whole abdomen. My lymphangiom. Plus burning pain in my leg and now my back starts to hurt as well so I’m already sitting too long in front of my computer. I feel so done, exhausted, tired and desperate. I just can’t anymore. I want to give up.