Talk to me (Poetry)

Talk to me

Your disregard hurts me.
I thought we were friends.
My heart is scarred,
it can’t take another wound.

Communication is the key.
Where shall I know,
what’s your problem
if you don’t

Talk to me.
I tried being a good friend.
But I can’t read your mind.
Talk to me,

In the past,
you made me feel welcome.
Giving me advices
and care,

that I was seeking,
from a good friend.
Talk to me,
tell me what has changed.

My scarred heart bleeds,
over a lost friend.
If you would just
talk to me
and heal my wounds.

© 16.09.18 LJ Meindl All rights reserved.

Chronic Pain (Poetry)

Chronic Pain

Another sleepless night
filled with pain.
Like a fire
it runs down my side, my leg.
Muscles, nerves,

These are the nights
I’m so tired of.

I don’t want to anymore.

Sleep and rest,
is what I desire.

But I’m kept in agony.

27.05.18 © LJ Meindl All rights reserved.


(CN dissociation, trauma, mention of csa)

There’s one topic that doesn’t let me rest and always comes up from time to time. Dissociation. Dissociative Identidy Disorder (DIS) also called multiple personality disorder (MPS).

A few months ago I suddenly had a flashback from a situation in my childhood that has caused me much disstress. Childhood sexual abuse. Two situations I have had always remembered but downplayed like “it was an accident”, “It wasn’t serious. I was just overreacting”. After the flashback I started having nightmares more often, seeing, living, these abusive situation again and again. I told my therapist about it and we decided that I write the memories down, since this often helps me to release and calm down. Now I have less nightmares but I’m not sure if it’s because of writing or if I’m blocking back the memories again.

The flashback was weird for me. I never could remember my childhood well. Just a few situations have stuck with me like when I taught myself reading at age 3. Other stuff I didn’t even remember when I saw photos of the event.

In my 20s I came over a forum for multiple personalities after I researched some of my symptoms. It started after my near death experience. I wrote about it here. Recently I did some more research about MPS and I think this feeling what I experienced may be a form of it. I already had dissociation when I was little, as I know now. Like I can’t remember certain parts of my childhood but do get flashbacks of events. On my first school day there happened something odd. After the day, when we were on the way back home, I had a feeling of I just woke up. As if I was sleeping until then. I had a feeling of not really being there, although I remember parts of the time before. But it felt like it wasn’t me doing things but someone else, as if I was just watching me doing stuff. I know this is a symptom of dissociation.
Later there came moments when I didn’t recognized myself on a photo or I couldn’t remember when it was taken. Over all the years I had often moments that I now find odd but I have seen them more as “I’m getting forgetful”, “I probably haven’t drank enough today” and so on. Like things disappeared. One moment I had something in my hand and thought about to put it somewhere to find it later and then I couldn’t find it anymore and not remembering where I put it. Or recently I was sure that I had opened the lock from the door but it was still locked. It’s only small things I didn’t remembered so it never occured to me it could be MPS.
In the forum I found, people told me that they had big blackouts, like for a few hours. It’s never been like this too me. I’m missing seconds and minutes.

But I know there’s much different forms of MPS. I know that some people are aware of their other (I like to describe it as souls) souls in them and others not. When I was 12 there it started with the memories that felt like memories from someone else. I started to see a young man. What’s different to for example shizophrenia is, we are aware that our “halluzinations” aren’t real. So I’m not really seeing him like seeing things with my eyes, but I imagine him. Like a kid who has an invisible friend. He’s a finnish guy, his name’s Heikki. I don’t know but this name just popped up in my head so I call him that. He told me he protects me and that he will always be here for me. It does makes sense, when I think on the childhood traumas. That I don’t remember them is sign for me that there must be someone else, who has lived this in my place. I haven’t met them yet.
But I kinda know some stuff about Heikki. He’s alloromantic gray-ace gay and a musician. He’s a very nice loving person. Oh and he’s a goth! He lived somewhere in Helsinki; his memories aren’t that clear yet but when walking through the streets, I have the feeling I know the places well. Like home. Since he’s a finn, it makes sense why this language feels so familiar to me. As if I had amnesia and have forgotten it.

This is the first time I’m talking about him although he’s kinda with me since I was 12. Back then it felt like I had two souls, that’s how I described it for myself after it started. But I was scared to be seen as crazy so I didn’t tell anyone about him. I thought “maybe I just have too much fantasy”. I used him often in my stories where he always was my best friend, taking care of me, protecting me, supporting me.

It’s weird and I’m not entirely sure if I have MPS or if I’m just fantasizing. Sometimes I have the feeling as if he’s talking to me in my head. The voice sounds different then than my actual thinking-voice. I’m not sure how to figure it out. I feel like I still block him because it really scares me (although he is so nice!).

Well, soon I’ll be back in Helsinki and I’m already curious if I get some De-javu moments again.

Aces are LGBT+!

Aces are LGBT+!

Cn ace exclusion; ace hate; rape mention!

On twitter is currently (again) a discussion going on if asexuals and aromantics belong to the LGBT+ community. Other LGBT+ people think we don’t belong there because: “Aces never have been oppressed like we real lgbt people have been!”

  1. Being LGBT isn’t about oppression! It’s not a competition! It’s a community for people who are not cisgender and/or heteroromantic AND heterosexual!
  2. Asexuals and aromantics are (as the names already say) NOT heteroromantic and heterosexual! Therefor they are queer and belong into the LGBT+ community.
  3. The full acronym is LGBTQAP! L=lesbian. G=gay. B=bisexual. T=transgender. Q=queer (but also for questioning people). A=asexual and aromantic.P=pansexual!
    See? We are already included in the acronym!

Now let’s talk about how “less” we are oppressed.

Between 12 and 17 I’ve been in hospital so I didn’t had a normal puberty as others. I couldn’t think about if my assigned gender matches me or who/if I was attracted to people. This only came from when I was 17. I soon noticed that instead of others my age, I had no interest into dating. It doesn’t make sense to me. But when I told this my friends or family, I constantly been told that I was “a late bloomer” and that I was “just shy”. Since I didn’t know that something like asexuality and aromanticism exist, I then tried dating. I thought, “Maybe the feelings come later.” This was dangerous. My first boyfriend raped me, and I needed 15(!) years to understand it was rape. I thought that this was how sex feels for everyone. That every woman just endures it and actually didn’t like it, but that it was a requirement in a relationship. I’ve even been told by other women that I “just need more experiences” or that “he wasn’t the right one”. But I didn’t want to make more experiences or dating someone else. But I did. Because I wanted to be normal, because I thought if I just try hard enough, I will learn it.
This has damaged me long term. In fact, asexuals have the highest rate to receive corrective rape! (Along with afab enbys I think).

When I was in my 20s and finally found out that asexuality and aromanticism existed, I was afraid to come out. I was afraid that people will see me as sick, because “everyone has sexual feelings”. That I would be send to a doctor, and that they would force me on medication or through therapies to “cure my sexual trauma”. Because in this society it is seen as not normal to not be sexually attracted to anyone. That this something to “fix”. That people who are not attracted must be depressed and suffer.

You know who else was (and still is) seen like this? Every other LGBT+ people! There are still conversion therapies to try to change gay and trans people! There are still doctors who want to prescribe medications to turn people straight!

So tell me again how asexuals and aromantics are not oppressed and don’t belong to the LGBTQA community! If you still think so, you are not better than the cisallohets who have oppressed YOU all your life! Don’t become an oppressor!

Touched By Death (Poetry)

Touched by death

There’s this feeling
that only I can recognize.
I see it on your face,
your soul was

Touched by Death.
You’ve left the living world,
for just one moment.
Everything was different.

It’s not a dream,
nor are you crazy.
I’ve seen it too.
That’s why my soul feels yours.

We are connected
by an ancient might.
Not much people
will ever get chosen.

We are the ones,
that got touched by death.
We are the ones,
who live a second life.

© 27.11.17 LJ Meindl All rights reserved.

Fatigue Syndrom

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.

Was ist ein Lymphangiom?

Als ich den Blog gestartet hatte, habe ich schon mal erklärt was ein Lymphangiom ist. Allerdings auf englisch. Nun möchte ich es nochmal auf deutsch beschreiben.

Kurz nach meiner Geburt wurde eine Geschwulst an meiner linken Hüfte entdeckt. Damals hielt man es für ein Blutschwämmchen, oder auch Hämangiom genannt.
Mit knapp anderhalb Jahren hatte ich deswegen meine erste OP, wo ein Teil davon entfernt wurde. Danach wurde ich jahrelang mit Kyrotherapie behandelt.
Was man damals nicht wusste, der größere Teil dieses Tumors befand sich in meinem Bauchraum, unsichtbar. Erst als ich immer wieder ohnmächtig wurde und über ständige Rückenschmerzen klagte, schickte man mich zu einer genaueren Untersuchung ins CT (Computertomografie). Dort entdeckte man dann den 20cm großen und 6cm dicken Tumor. Ein erhebliches Ding wenn man bedenkt, dass ich damals gerade mal 12 war und stark untergewichtig.
Ich wurde dann nochmal operiert. Da man dort noch nicht genau wusste womit man es zu tun hatte, verblutete ich. Ich war für ein paar Minuten tot und hab es nur mit Hilfe von 3 Blutkonserven gerade so geschafft zu überleben.
Das Problem war, dass ich eine seltene Mischung von dem Lymphangiom habe: ein Haemolymphangiom.

Haemolymphangiom, ein Mischtumor, der zusätzlich hämangiomatöse (von den Blutgefäßen ausgehende) Anteile aufweist.

Somit habe ich die seltenste aller seltenen Lymphangiom-erkrankungen 😀

Zystische Raumforderung an Kopf und der Hals (zusammen ca. 50 %), Axilla (13%),

Rumpf (8 %) und Extremitäten mit 11%. Seltener sind Lymphangiome im Abdomen, Retroperitoneum, Mediastinum, Knochen oder Skrotum zu finden.

Bis 2000 wurde ich regelmäßig mit Lasertherapie behandelt. Zwischendurch auch mit OK-432. In Narkose natürlich, da man an den Tumor ja nicht einfach rankommt und das Mittel direkt hinein gespritzt wurde. Prof. Waldschmidt hatte damals extra meine Eltern um Erlaubnis gefragt (musste er ja auch) um dieses “neue Medikament ausprobieren” zu dürfen. Somit habe ich dazu beigetragen, dass nun viele Menschen mit Lymphangiom damit behandelt werden.

Heutzutage ist es so, dass das Lymphangiom bei mir im Darm, Milz und Leber sitzt und sich eine Zyste and der linken Hüfte befindet. Oft habe ich Bauchschmerzen, Darmprobleme mit Übelkeit und wenn die Zysten aufplatzen und bluten, Schwäche und chronisches Fatigue-Syndrom. Die Zyste an der Hüfte macht ab und zu ebenfalls Probleme. Bei Wind und Nässe schwillt der Tumor an und drückt etwas auf den Beinnerv. Manchmal wird auch die linke Bauchseite unterhalb der Narbe dick und es fühlt sich insgesamt entzündet an. Da hilft dann Wärme (wie ein heißes Bad, Heizdecke, Wärmeunterbett) und Ibuprofen. Da bei einer OP als ich 14 war der Femoralisnerv im linken Bein verletzt wurde, ist es teilweise gelähmt und seitdem lebe ich mit chronischen Nervenschmerzen. Dafür nehme ich Tilidin, was mäßig hilft.

Aufgrund dieser Erkrankung, der Lähmung, Skoliose und meinem Autismus bin ich seit 2008 Frührentner.


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

Lymphangiom and infects

Currently I’m sick again. It’s not that bad, just a little cold but for a chronic ill person like me, even a small cold can be heavy. Because my tumour, the lymphangiom has the bad habit to react to infects. When I get sick, the lymphangiom cells get inflamed, they might swell, fill with blood and pop open so I’m bleeding inwardly. My cysts are everywhere in my intestine, spleen and liver but gladly they’re small, so the bleeding isn’t dangerous. It’s just annoying because it makes me even less energetic, more exhausted and gives me light nauseous than usual.

When I was a kid, I often was called “lazy” for not going to school with “Just a little cold”. But it wasn’t “just a little cold”. It affects my whole body when I’m sick, and therfor need a longer time to recover.
This is something what I’m still thinking about considering my planned Hysterectomy. It is more risky than usual and I definietely will have  alonger recovery time. But I think, I can’t live a happy life if I keep my uterus.

So now I’m cuddled up here, pumped full of meds and trying to fight this cold.