Assistance update

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.

Personal Hell (poetry)

Personal Hell

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
for you.

I’ll go through
this personal hell
to feel the fire in my heart
for you.

I feel so restless, so fucking scared
but your music makes me
smile again,
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
for you.

Dedicated to The 69 Eyes.

Can’t sleep…

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

Luka

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 (poetry)

I am so tired
Of fighting every day.
The pain,
The fatigue.

For what
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.

Exhausted

CN Depression

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.

Life updates

Dear diary,

lately in much stress here. Now after my name and gender change I have to run to all the offices to get my papers changed. Also now I finally can start applications for new things. Next week I got an appointment to open a bank account for me. Yes, I didn’t had an own bank account. To this day my mum was managing and still do all my financies. I never could deal with numbers. I have troubles to understand the working with money. Like I can’t plan who much I need for a week. So I don’t know how much money I have and how much I have to pay for bills, so I can’t count how much I have back then to live.
But now I finally want to start this together with my mum.

Another thing I did, was filling out an application for personal budget. That is support money that I can use for helpful things that should make my every day life easier. I’m planning on to hire an assistance who helps me with grocery shopping, my household and takes me to doctors appointments and social help and stuff. Until now my mum does this all for me. She also helps me to use public transportation since due to my disability I need help to enter/leave train, bus etc, and also helps me if there come sudden changes into public transportation. In this situation I’m lost without help, because my brain just get into shutdown mode.

So for this I had an appointment with a doctor from social help who should check what help I need. He was totally ignorant and incompetent. We brought all my medical reports, he knew I get permanent invalid pension and that I take strong painkiller for my chronic pain. So, nevertherless he told us that he “doesn’t understand” how I can’t do my household and all. I even had to tell him my daily routine where I told him about intense pain and the rest I need even if I don’t leave my home.
His assistant was not even better. She kept asking why I don’t go to therapy in autism center to “learn” how to do my household. Not even that she completely ignored all my disabilities, she really insisited that my autism would be treatable! My mum and me told them that we were at the autism center the counselor has sent us to the autism assistance because this is what we needed. The only “therapy” they do there is for socializing, like how to begin a talk, keep it up and become friends and so on. And I can do that pretty well. At least online ;)In the end she looked up a therapy and diagnosis from 10 years ago, social phobia. I then told her that it doesn’t matter because it was a misdiagnose what was refuted by the new autism diagnosis. She then said “Social phobia, autism, whatever you call it, it’s just a diagnosis.” I almost forgot myself! That she doesn’t know the difference made me so mad! Social Phobia is acquired and treatable whereas one is born with autism and it’s treatable!

The doctor also asked me about my transgender therapy I’m still doing. I don’t know what this has to do with that I need an every day life support? In the end he wanted to do a medical examination on me what I refused because I think from the medical reports, my personal description of the symptoms my disabilities and what I’m struggling with, should have been enough. Also I had the feeling he only wanted to see a transgender body.
He was a very unsympathetic person…

You see, I have a lot of stress here and have to fight again for my needs. Why does they make it so hard for people with disabilities to get them the support they need to have a lifeworthing life? Life is already short enough, especially for chronic ill people, so why do they make it even harder?

Luka

Near Death Experience (Poetry)

(I wrote already about this but felt like I wanted to re-write it and put more details into it.)

Near Death Experience

When I sank into darkness
there was no fear.
The high pitched sound
of the heart monitor
hurt my ears
and, I looked up
to see what was going on.

The doctors fought for my life;
I saw my body on the operating table
but, I didn’t care.
This body wasn’t needed anymore.

A dark figure next to me
distracted me,
held out his hand for me
to come with him.

Death.

I felt no fear,
no discomfort,
no pain.
Everything felt wonderful.

A bright lovely light
appeared behind him.
It was welcoming me.
But before I could take his hand,
he stopped.

Looked at me with confusion
and back to the doctors,
who kept fighting.
The heart monitor
stopped it’s annoying sound
and beeped now in my heartbeat.

He said:
“It’s not your time yet.
You have to go back.”
But I shook my head,
stood straight in front of him.

“I don’t want to go back.
There’s so much pain.
I wanna stay here
’cause here I’m fine.”

Death sighed,
knowing that I won’t change my mind.
So he gave me a promise:
“When it’s your time,
I will be here again and take you by the hand
into the light.”

I agreed, and went back into life.

02.09.16 © LJ Meindl All rights reserved.