Hi. Hello. It’s been a while, hasn’t it? I’ve quite thoroughly neglected my own site for the last two three years (oh god) FOUR years. (I’m now finally getting back to writing again, so the third time’s the charm, right?) Is it because I kept growing weaker by the day and was unable to go out and about to take pictures? Yeah, kind of. Is it because I’ve been anxious about writing in general because I get the feeling that I should be working on my BA thesis instead? That too, definitely. It has been a rough couple of years.

The Physical

A bit more on growing weaker. Aside from the usual vulnerability to infections due to my medication, GVHD has been kicking my ass by giving me sclerodermatous skin. An autoimmune disease to match an immunosuppressed individual. It, thankfully, is not the regular kind and it just applies to my skin. Some parts of my skin where it applies can’t grow hair and have abnormal skin pigmentation. Oh, and the main thing is the hardening and tightening of the skin. It started in my neck and kept creeping elsewhere for a good while before it was noticed. My neck kept tiring increasingly fast and I started having trouble walking longer distances. The movement of my arms and legs is rather inflexible nowadays. I stayed at a rehabilitation ward for a couple of weeks to regain some walking ability, but I still could not walk more than a hundred metres or so. Still can’t – I have to use a mobility aid to move any real distance when I’m not home. Still better than how things were until two years ago. At least now I don’t need to have a wheelchair to commit to a longer distance. All this has been treated via various methods with some success. Recovery is a very slow process, but there is improvement nonetheless. And whenever there’s been improvement, it’s been followed by setbacks undoing the progress gained in walking ability. Repeatedly. For years. I’m doing very well this year though, as I’ve been given asthma medication to help with the pitiful state of my lungs (which then makes exercise easier). Will have to see what the rest of the summer brings.

Another thing that I remembered as I am writing this is the fact that they found osteonecrosis in my right knee. So the bone had at some point lost blood flow and it’s irreparably damaged, occasionally causing pain and keeps gradually getting worse over the course of months and years until I need knee replacement surgery. I’m definitely jinxing it, but thus far it has been relatively tame and hasn’t caused horrible pains. The knee bends pretty poorly though. I’m starting to get pains in my knee just thinking about this.

The Mental

Mentally I was a complete wreck and I was finally introduced to the mental healthcare system. It’s actually very good once you get your foot in the door. I was officially diagnosed with moderately severe depression and then given therapy and medication that helped me to manage it. Bupropion, for anyone curious. I don’t get any side effects from it, even when dose has been increased. It’s nice being able to do things other than just sleeping half the day away. From there I also got into official testing for autism and ADHD, but nothing really came out of it other than “yeah, well, we all have these tendencies to some extent and we can’t be sure if your traits are caused by your somatic illness”.

***Tangent: I think it’s silly how much they focus on the childhood symptoms of it when it’s literally the most controlled and structured part of your average child’s life: full weeks of school for a decade under the supervision of your parents, followed by another extremely structured 2-3 years. It’s only really AFTER these that you have to try to manage your life without external forces enforcing a routine.***

Anyway, despite the inconclusiveness of the result, I attended a group for learning to cope with the day-to-day of ADHD and autism. I thought that since accepting psychiatric help for the first time in my life helped, I might as well try this too. The group had about some fifteen of us, with most of them having received diagnoses. Attending really helped affirm my position for myself: I may not formally belong to the spectrum or any form of ADHD, but I sure as hell have the typical:

1. hyper focus flow states,
2. obsessing and dedicating a few weeks on a topic or project before tiring of it and finding something new,
3. forgetting or neglecting bodily functions until the point of feeling ill,
4. issues with perfectionism and getting stuck on the little details,
5. difficulty with time management and task prioritisation,
6. rationalising away from self-appointed punishments or bypassing the task to the reward,
7. tendency to push simple five minute tasks for weeks and months,
8. difficulty keeping eye contact,
9. tendency to overthink social interactions,

etc. ad nauseam. I think you get the point – I functionally have ADHD. I’d like to have an official little certificate stating it to be so, but I’m fine with having been given the tools to come to terms with my situation. So in essence I’m self-diagnosing, which I’ve historically derided. I still think that you should go to the healthcare professionals for diagnoses, but when you look, walk, and quack like an ADHD duck, you might just be an ADHD duck. And an odd duck at that.

The Existential

It’s been a long four years. Stagnant progress in physical rehab, barely any progress in studies, no progress with my BA thesis. Mentally I’m in a significantly better place. While I’m hopeful for the future of my physical condition and I can see myself being back to full-time study in a year’s time, I can’t help but dread the future. I don’t have a clear vision of what I am to do “when I grow up”. I’m not sure if I’m eligible to become a teacher as I’m not (after my request) required to show a sufficient knowledge of Swedish (as I would essentially have to learn the language from scratch). Even if I am eligible, I’m not even sure if I want to at this point. Teachers are poorly paid, mistreated, ill prepared, and abused by local governments by chaining work contracts instead of being given full employment – which is illegal, mind you. You either accept the abuse or you don’t get work at public schools in that region after you challenge the local government. Then I have my immunosuppression angle that gives me anxiety as well. Schools are breeding grounds for seasonal infections, each one of which can be risky for me. I try not to fuss over chances of getting sick, but working at a school essentially guarantees that I will get sick. I’m not sure if I can live with that. On the other hand, I’ve been looking into programming and making games, which has been pretty fun, but I’m not sure I could do this as a job. Or could I? I’m trying to do a little bit of experimentation over the summer to see if I can get anything made. Anyway, my point has been that I can’t see a clear image of where I fit in the job market. I do want to work, of course. I’d go insane if I didn’t try to do something “productive” at least every now and then; I deal very poorly with limitless free time. I’m hoping that getting back to full-time study helps me regain some confidence in my abilities, but for the time being I can’t help but dread as my visions of the future are blurred beyond recognition.

The Content

That was a bit of a ramble, wasn’t it? I’ve honestly missed just rambling on in long-form posts where I can make my thoughts known in as (in)articulate a form as I wish. All I hope is that it’s still readable despite the train of thought style of it. Other than this post, I’m trying to put in an effort to posting more regularly again in general. I read through some of my posts of yesteryear last night and I was reminded that I can damn well write if I just let myself. And I’ll enjoy it as well. So I’ll try to give myself more opportunities to write more. If this fails, I guess I’ll see you again in another four goddamn years. lmao

P.S. I got engaged during this time as well. Just thought I’d mention it.