Zebraeable

Photography, disability, paintings and cats. Lots of cats.

[zebrasachsen]

A collection of my happy place. <3

[zebrasachsen]

My photography came to a screeching halt when I moved to Munich due to the fact that the camera I used belongs to my father.

But the motives don‘t stop coming to me. so I decided to get a new phone with a better camera. I needed a new phone anyway, so why not make the camera a priority.

[zebrasachsen]

Oh ye, how much has changed

It has been so long since I have written anything on this blog. I also only have time to write anything, because I am home sick with the flu.

Where to start?!

I finished my training and got a job with a great company now. I love my new job and I really hope that I can keep it, even though

second fact I moved all across the country and my body is still adjusting to the changed climate and decides to come down with sicknesses and migraines way too often.

Because I have been clinically diagnosed with EDS - finally - and get proper treatment now, which involves pain treatment that actually lets me take part in normal life activity. I walk without a cane, I can go out with friends, if I choose to do so and can go on walks with my kittens.

The biggest change(?), well improvement has been that I am finally living with my viking. We got engaged a couple of days ago and life is glorious.

I am so very happy. I miss my family up north and my friends, who are scattered all over Germany, but I finally get to live with the most important person in my life.

So yeah, I needed the break from my blog to sort out health, work and life in general and it got me to this happy place.

[zebrasachsen]

It’s winter time. First real snow of the year and the cats try to sneak every beam of sunshine that they can get.

[spooniedollie]

Tis the season where my joints are crying every morning

Even under a soft blanket and super warm pajama bottoms

[zebrasachsen]

Shitty week

This week was horrible. Not only because of political issues, which I won’t even get into, but my personal issues are a mess.

This entire week my joints were all over the place. Before I was halfway recovered from subluxing one, another already went haywire.

Migraines popped up all the time and on Friday it was so bad that I lost my ability to talk and had visual impairments. While still at work.

My final exams are coming up and I didn’t get any studying done. Either I am lying in bed from pain or I am lying in bed crushed by depression. I am terrified that I will fail and that means I won’t get to live with the love of my life for another 6 months.

I am also not done with editing the wedding pictures since I took way too many and my depression won’t let me see beauty. I look at the pictures and they all look plain and meaningless. I only see blurriness and what I did wrong.

On top of it all the former landlord of my partner decided to be a massive jerk and turn illegal. He is demanding a huge amount of money from us that he got no claims to. So I will go see a lawyer tomorrow, because I have neither physical nor mental strength left to deal with the situation.

I am starting to cry even from kitten videos. I might not have hit rock bottom yet since I am still able to somewhat communicate my struggles to my partner, but I feel myself curling up inside. It’s like my brain is trying to protect me from everything that is happening, but all it does is shutting in the knowledge I need for my exams.

I tried to pick myself up yesterday and got all motivated to get stuff done. Two hours in my spine and pelvis got so tangled up that I had to call my father to strap me into my support belt and use my cane.

Since my body started speeding up on degrading two years ago, I always managed to make jokes about it and laugh it off. Right now is the first time that I actually can’t find anything amusing anymore.

My heart does cartwheels all the time just from the stress.

[zebrasachsen]

I actually was booked as a wedding photographer a while ago. Sadly my illness has kept me from editing all the pictures yet, but just being there was so much fun. (Despite the onsetting pneumonia...) The couple was in their early fifties and so madly in love. I feel very lucky that I was allowed to be a part of their wedding and have a part in making it their big day.

[zebrasachsen]

My dad actually managed to capture one of the rare moments when both of the kittens are peacefully snuggled up on my lap at the same time.

I love those moments. They are the closest I ever get to meditation.

[zebrasachsen]

Spoonie: My appointment with the specialist is months from now.

Non-Spoonie: Why are you waiting so long to go?

Spoonie: ...No, no. That's the soonest they could get me in.

Non-Spoonie: Can't you just go somewhere else?

Spoonie: -.-

[zebrasachsen]

The view from my bed at the pain clinic every morning.

The best part about hospital.

[zebrasachsen]

In my favourite park Lütetsburg was the lightshow “Illumina” and my dad and I went out for a photo stroll.

I chose a few pictures that I liked the most to show you how magical it was.

[youngchronicpain]

when you’re having painsomnia but you’re in too much pain to get out of bed to find your medication

[zebrasachsen]

Since I was in the pain clinic I am officially “clean”.

No more pain medication for me. Like none.

Not that the pain is gone in any stretch of the imagination.

They did inject some kind of artificial disk into my spine to keep my extra-joint in check, but it dissolved in less than two weeks. Also my subluxations are still happening full-time.

So basically I am as always. Just in more pain. All the pain. Oh god, the pain.

Not sure whether it was their intention, but I turned to drinking Absinthe to numb myself for a couple of minutes. Seeing as I am also getting sober ridiculously fast, it could become expensive real quick.

The only thing the pain clinic really did for me was getting my migraine medication back in place - my neurologist had prescribed me double the dosage an adult should take and I was obviously going insane - and confirmed that I should see an EDS specialist.

Then they send me home with withdrawal symptoms - whatever -, another clean mental health record - yey - and no way to deal with the pain of subluxed joints. What the actual fuck.

They saw me sublux the extra-joint in my spine and how it crushed my spinal cord so bad that I couldn’t move anymore and had no feeling in my legs anymore. “Yeah, you might wanna get that removed, seeing as you nearly died from getting the artificial disc.”

Sweet, cool, how shall I deal in the meantime? Nobody knows.

I was so happy when I got out of the clinic, because I thought I could deal without pain meds. Two weeks at home, in my real life conditions and I relapsed twice into Opiates, because I could not walk anymore. That’s the kind of pain I am talking about.

“Normal subluxations” suck and hurt, but I am dealing with that kind of pain okay as long as I feel secure.

I don’t feel secure when I am on a walk in the park at night and the extra-joint slips. It crushes my spinal cord and I lose the feeling in my legs. I start stumbling towards the exit, my legs and back start cramping. I feel like I might fall, it is dark and a panic attack is setting on. I can’t even stop for a second to catch my breath, because all that keeps me going forwards is the muscles in my bones remembering how to walk. I make it to the car and sit down, convulsing with spasms that go up and down my back and legs.

I didn’t even take an Opiate then. It was a Saturday. Tuesday evening my sick leave was up and I still had sore muscles from the cramps, the extra-joint hadn’t relocated and I had 9 hours on an office chair before me. I was so tense that it set on a migraine. At that point I took a Tilidin just to be able to stretch out on the bed and not start convulsing.

The other relapse was yesterday. I got dressed for a family gathering. My uncle’s birthday. I put on a pantyhose and all of a sudden my extra-joint just went on a joyride through my spine. I have no idea what happened, but I actually managed to get dressed, not ruin my make-up with tears and popped a Tilidin. Got through the party and went to the cinema afterwards. Halfway through “Finding Dory” my extra-joint decided to relocate with so much noise that two rows in front of me turned around.

I am not lying, I miss the drugs for their other effects, too. I have been seriously questioning myself over whether I need them for pain relief or emotional support, but I arrived at the conclusion that I really need a way to deal with the physical pain.

I got a great net of support, which has been carrying me through diagnosis, asshole-ish doctors, pain therapy and beyond. I can tell them when I feel a craving for drugs as a withdrawal symptom. They would never support me to take an Opiate then. I explained myself to them every time I relapsed so far and they supported my decision and only pushed me towards pursuing a solution.

I am scared. Spine surgery is a scary thing and it seems like the only option. The extra-joint is right above the pelvis on the inside of my body (facing my bowel basically) and it is a very bad place to operate on. Also my subluxations might make it necessary to have extra surgery to stiffen the spine completely. I need to talk to this EDS specialist, who lives 900 km from me, and then go look for a spine surgeon that I trust.

All while having my final exams in November and January, moving early next year and not seeing my partner for six months.

To get finally get back to the gif: Could you at least let me sleep, pain? Pretty please?

[tea-spoonies]

Subluxation Chart

[silentwinged]

The head pain’s connected to the neck pain; The neck pain’s connected to the back pain; The back pain’s connected to the rib pain…

Sing along, you all know this one…

[zebrasachsen]

Waiting for hospital

The closer my stay at the pain clinic comes, the more anxiety unfolds, the slower times seems to pass and the less I can wait.

My doctor accused me of simulating pain, being a drug addict and insane again. Even though I got a copy of the letter from the pain clinic saying I am in intense pain and my psyche is not affected by my illness. (Plus the letter from the psychiatric ward she sent me to also confirming that I am mentally stable and absolutely okay.) - Fucking cunt. Also Tramadol is the strongest pain medication that exists in this universe. There is nothing stronger. I am making up the existence of stronger pain medication. Uh-huh.

The letter from the hospital is so encouraging. They actually wrote down what they want to look into, including rheumatic diseases again, muscles, bones and mostly nerves. (They were not impressed with what my doctors did so far.)

Buuuuut at least I got a key for the elevator at my school now. (I have school once a week in addition to my work for deepening my ‘training’.) Before that I would have had to walk three stories to my classroom or wait around for someone to take me along. Now I can at least spare myself the crying and panic attacks before school - that’s quite nice.

[chronicallyclever]

When a doctor says there is no reason for my pain...

My Reaction:

[zebrasachsen]

me, mentally: don't talk about your illnesses don't talk about your illnesses don't talk about your illnesses

person: hey! how've you been doing lately?

me: oh well...*talks about illnesses*

me, mentally: FUCK.