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cPTSD and Dissociation // Flókin Áfallastreituröskun og Hugrof 07 Apr 2024

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Sumir hafa kannski tekið eftir því að síðustu 6 ár eða svo hefur lítið gerst hjá mér þegar kemur að útgáfu tónlistar, tölvuleikja og annara verka. En það er því að öll einbeiting fór í eitt stærsta verkefni sem ég hef nokkurntímann unnið að. Þó að undirbúningurinn hafi verið töluvert lengri þá byrjaði eiginleg vinna á þessu verkefni að ég held 2018. Hvaða verkefni er þetta? Ég og mín heilsa.

Árið 2018 byrjaði ég að finna fyrir allskonar einkennum sem að erfitt var að skilja. Í þokkabót eru ein einkennin minnisvandamál sem líkjast helst einkennum fyrstu stiga alzheimersjúkdómsins sem gerir þetta svo flókið því ég þarf svo oft að byrja á byrjunarreit vegna minnistaps. Á Reykjalundi heyrði ég fræðing segja mér einmitt að erfitt væri oft að greina alzheimer í ungu fólki því oft er hent á því minni sjúkdómsgreiningu enda algengari hjá fólki á mínum aldri. Til öryggis var ég þó tekinn í alzheimer próf og blessunarlega var svarið neikvætt. Ég er ekki með alzheimer.

Svo eru mörg önnur skemmtileg einkenni sem ég þarf að berjast við, en oftast tengist það inn á það að það er ójafnvægi í drif og sef kerfum taugakerfisins. Drif og sef kerfin virka oftast á víxl og eitt hvílist meðan hitt keyrist. Eitt sér um að láta okkur gera hluti, en annað sér um viðhald á líkamanum, eins og til dæmis ónæmiskerfið, líkamsklukkuna, svefn og fleira. Þegar kemur ójafnvægi á þessi kerfi þá getur eitt kerfið byrjað að taka algjörlega yfir, og í mínu tilviki er það drifkerfið. Líkaminn minn fær mjög lítinn tíma í viðhaldsvinnu, og því til dæmis er ónæmiskerfið hjá mér orðið ansi lélegt. Sama gildir um svefn, meltinguna og annað. En þýðir það að ég er alltaf á fullu? Nei, þvert á móti. Svipað og þegar maður keyrir bílinn of lengi á of háum snúningi þá á endanum ofhitnar hann. Bensíngjöfin mín er föst niðri en ég kemst ekkert áfram.

Hvað er ég með? Allskonar samansafn af greiningum og öðru en það sem heldur utan um þetta allt er það sem kallast flókin áfallastreituröskun eða cPTSD (complex post traumatic stress disorder) í bland við tíð hugrof. Þessi tíðu hugrof valda oft minnistapi. Venjulega er sagt við mig að meðferð við PTSD og mögulega cPTSD geti tekið um eitt til tvö ár. En þegar maður blandar hugrofunum við þá þarf svo oft að byrja á byrjunarreit og því getur meðferð tekið fjölda ára.

Það eru núna komin eitt til tvö ár frá því ég fékk rétta greiningu, og sex ár síðan þetta byrjaði allt saman, og ég er ennþá að reyna að ná botninum svo ég geti byrjað að vinna mig upp. Ég er búinn að vera óvinnufær í 3 ár. Þetta er langhlaup og ég er rétt að byrja. Þegar ég fékk réttu greininguna leið mér þó eins og ég væri loksins kominn af stað frá ráspólnum.

Hvað er flókin áfallastreituröskun?

Sumir kannast mögulega við áfallastreituröskun eða post traumatic stress disorder (PTSD). Í stuttu máli er PTSD nokkurskonar viðbragð líkamans við miklu áfalli. Frægast er mögulega hermenn og fólki er koma úr stríði með “shellshock” en það er einfaldlega gamla orðið yfir PTSD. Annað dæmi er tildæmis fólk sem lendir í bílslysi, verður vitni að dauðsfalli, fórnarlömb kynferðisofbeldis og fleira. Complex PTSD kemur nokkurnveginn á svipuðum stað niður nema að í staðinn fyrir eitthvern hnitmiðað stórt áfall þá eru þetta oft margir minni viðburðir eða minni áföll. Staðinn fyrir eina hnífstungu þá erum við að tala um þúsundir pappírsskurða.

Þið kannist mögulega við það þegar fólk lendir í áfalli þá eftir X marga mánuði nær fólk að vinna að vissu leiti úr áfallinu. Þetta er ekki bara eitthvað sem við gerum meðvituð heldur er þetta einnig sjálfvirkt í undirmeðvitundinni og í öllum líkamanum og taugakerfinu. Í sumum tilvikum þó að við teljum að við höfum náð að vinna vel úr þessu þá er taugakerfið ekki sammála.

Þetta er ekki endilega bara andlegur sjúkdómur heldur er þetta mjög svo líkamlegur sjúkdómur, því að taugakerfið sem þetta hefur áhrif á stjórnar svo ótrúlega miklu í líkamanum okkar. Svefninn, Melting, Ónæmiskerfið og svo framvegis. Ein skemmtileg aukaverkun af þessum sjúkdóm er að líkaminn fær ekki að sinna reglubundu viðhaldi á ónæmiskerfinu og því verður ónæmiskerfið veikara og því lendir maður verr í öllum pestum. Væri hægt að líkja þessu við þegar það er svo mikið að gera hjá manni í lífinu að maður hefur ekki tíma til að laga til, slá grasið, þrífa… og svo framvegis.

Hugrof?

Hugrof er áhugaverður hlutur því öll upplifum við það, en ólíkt kvíða, þunglyndi og streitu þá vita fáir hvað það er. Kannastu við það að vera að keyra langa vegalengd og síðan fatta að þú manst ekki eftir síðasta hálftímanum eða svo. Það er eins og líkaminn hafi verið sofandi eða á sjálfstýringu. Heilinn gerir þetta til að verja þig að vissu leiti. Engin þörf að vera viðstaddur og jafnvel muna að keyra í mjög einhæfu landslagi. Heilinn byggir veggi á milli parta sálarinnar. Það er hugrof.

Þetta getur þó farið að valda vandræðum þegar maður blandar þessu saman við áfallstreituröskun, kvíða og álíka. Síðustu 60 mínútur hjá lækni voru streituvaldandi, best að gleyma því öllu. Mikilvægar upplýsingar? Alls ekki, henda bara öllu.

En það er ekki beint rétt að segja að minningunum sé hent. Þau eru bara hólfuð að í sína parta af heilanum. Svo tvemur vikum seinna þegar maður hittir lækninn aftur þá vakna minningarnar mögulega aftur upp. Vandamálið er bara, mun maður muna eftir því að maður er hjá einhverjum lækni yfir höfuð?

Þetta veldur því að í staðinn fyrir að taka nokkra daga í niðursveiflu getur það tekið mig vikur eða mánuði að komast í gegnum niðursveiflu og vinna mig upp úr henni. Því ég veit oft ekki af niðursveiflunni eða gleymi góðum húsráðum til að vinna mig í gegnum sveifluna.

Eins og að vera að smíða hús en maður gleymir alltaf hvar húsið er staðsett þannig að maður byrjar alltaf upp á nýtt á nýjum stað. Eða kannski gleymir maður því að maður var yfir höfuð að byggja hús.

Hvað ætli séu margir húsgrunnar sem ég á á víð og dreyfð um landið?

Ég byrjaði að skrifa þessa stuttu grein fyrir um það bil ári síðan. En hugmyndin er mögulega margfalt eldri. Gæti líka verið að ég hafi byrjað á þessari grein margoft á síðustu 6 árum en man bara ekki hvar grunnarnir eru. En í þetta skiptið náði ég að klára þetta stutta ritverk og vonast ég til að það muni virka sem varða fyrir mig. Næsti byrjunarpunktur þegar ég fell.

Vonast ég til að skrifa í framtíðinni meira um þetta. Til dæmis er margt áhugavert sem ég hef þurft að breyta hvernig ég vinn við tölvur útaf hugrofunum. Hef ég þurft að stilla stýrikerfi eftir mínum þörfum algjörlega á eigin vegum. Það eru til allskonar verkfæri fyrir fólk með sjóntruflanir, vandamál með fínhreyfingar og framvegis, en ég sé enga innbyggða stillingu fyrir fólk með hugrof.

English

Some people might have noticed in the past 6 years that not much has happened on my front in the regards of music, video game and multimedia production. The reason for that being that all of my attention and time got devoted to the biggest project I’ve ever worked on. There is quite the backstory to this but one can say though that actual work started for real in 2018. This project is called my health.

In the year 2018 I started experiencing a whole smorgasbord of symptoms which were hard to understand and pinpoint. To top it all off one of the main symptoms were memory problems that can be described as similar to early stages of alzheimer. This makes the whole process of healing a lot more complicated as I’ve often had to start from scratch because of this. When I went to the occupational rehabilitation center Reykjalundur I was told by a specialist that because of this Alzheimer can often be hard to detect in young people as my current problems are more common and therefor people can sometimes me misdiagnosed. To be on the safe side we decided to go through some tests to make sure that I did not have Alzheimer. Good news are, I don’t have Alzheimer.

There are loads of other fun symptoms included in this fight, but many of those are related to the imbalance between the sympathetic and parasympathetic nervous systems. Those two systems often work exclusively to each other. One rests while the other works. One of them takes care of maintenance while other makes sure we do things. Examples of maintenance work is our immune system, the body clock, sleep, rest, et cetera. When those two systems are in imbalance one of those systems will take over. In my case the maintenance mode is put in the back seat and therefor my immune system, sleep, and similar things don’t get the resources they need to function properly. Does this mean I am always on “full throttle”. No. Just like with cars and other machines, if you drive them too fast for too long they will overheat. My acceleration pedal is stuck to the floor but I am not going anywhere.

Then what do I have? I have a wide variety of diagnosis but the one that sort of put them all under one hat is is cPTSD, or Complex Post Traumatic Stress Disorder, in mixture with frequent dissociations. These dissociations are the ones that often cause memory loss for me. Normally treatment for PTSD and possibly cPTSD can take one or two years. But if you mix frequent dissociations into the mix you will often need to start from square one and therefor treatment can take many more years.

It’s now 6 years since this all started for real, and two years since my proper diagnosis, and I feel like I am still trying to reach the bottom so I can start working my way up. I’ve been unable to work for about 3 years. This is a marathon, and I am just starting. But at least when I got the correct diagnosis I feel like I’ve at least gotten away from the starting line.

What is complex Post Traumatic Stress Disorder

Some people might recognize the term Post Traumatic Stress Disorder or PTSD. In short, PTSD is the body’s response with a traumatizing event. Most famous is probably “shellshock” experienced by soldiers and civilians who’ve lived through war. Another examples are people who end up in a car accident, witness a death, abuse survivors, etc. Complex PTSD is in a way a similar diagnosis except instead of one big traumatizing events you will have many smaller traumatizing events. Instead of one knife stabbing you have thousands of papercuts.

People who experience a traumatizing event often manage to recover (to a certain degree) after X amount of months or years. This happens both conciously, but also unconciously in the background throughout the body and the nervous system. In some cases we might assume that we’ve conciously dealt properly with the trauma but the body and nervous system might not agree.

This is not necesserily just a psychological disorder but because of how it affects every corner of our physical self one could refer to this ias a psychological and a physical ailment. The nervous system that is hit by this controls and maintains so many things about our body. The sleep, the digestion, the immune system, et cetera. One fun little symptom of this all is that the body can’t do regular maintenance work so the immune system becomes weaker and weaker making you more suspectible to various flues and other diseases. You could compare this to being so busy that you don’t have time to clean your apartment, mow the lawn, cook good healthy food, et cetera.

Dissociation?

Dissociation is a fascinating thing, but we all experience it frequently, but unlike stress, anxiety and depression very few people realize what it is. Are you familiar with driving long distances and then after half an hour or so you realize you don’t remember driving for a while. You zoned out. It’s like the body was on autopilot. The brain does this to defend you to a certain degree. There’s no need to be present or remember all the details of some very bland road landscape. The brain builds walls between parts of the soul and memories. That is dissocation.

This can start causing problems though when you mix this with PTSD, anxiety and similar things. The last 60 minutes at the doctor’s office are now anxiety inducing, it’s best to build a wall around those memories. You don’t want to remember all the useful details of that visit. Not at all. You might not even remember the doctor at all. Throw it all away.

It’s not entirely wrong that the memories are thrown away though. They are just walled in with each part of the brain. So the next week when you meet the doctor there’s a chance the memory will resurface. The problem is, will you remember you are seeing a doctor in general?

This can result in instead of few days in a downward spiral, it can take weeks or months to recover. Because often I won’t even notice or remember the downward spiral, and will also forget all the tools and habits I have to fight the downward spiral.

It’s like building a house but you keep forgetting midway through a project where the house is located, or even the fact that you were building a house at all. So you keep starting a new house project in a new place.

I wonder how many unfinished houses by me are spread around the country.

I started writing this short article about a year ago. The idea is possibly a lot older. It could also be that I’ve started this article multiple times for the past 6 years but I just can’t remember where the drafts are located or that I started them at all. But this time around at least, I managed to finish it. And I hope this will work as a checkpoint for me. The next starting point I will start at when I fall.

I hope to write more about this in the near future. For example there are many interesting ways I had to adapt to how I work with computers because of dissocations. I’ve had to customize my operating systems and hardware after my needs similar to how one would adjust their software and hardware if one has problems with sight, motor skills, and such. In my case though there are no built in accessability features for dissoccation. I need t obuild that from scratch.

Kito Carnage v3.1 rereleased in 2019 06 Oct 2019

After 19 years from its birth, my first ever game creation, the multiplayer level Kito Carnage for Bungie’s Marathon Infinity sees a little rerelease. Not much has changed since the last release in 2005 other than I managed to save it from the grasps of the near dead compression format stuffit’s .sit. This release therefor features the mighty old .zip format instead for the sake of compatibility.

Check out the project page here or download it directly: Kito Carnage v3.1.

Volodka released on App Store & Play Store 22 Mar 2015

The game Volodka with sound design by yours truly has been released on Play Store and App Store for the set price of zero! Go get it and obliterate your friends in this fast two player game of stealth and speed.

K. Fenrir releases his debut album 18 Oct 2014

The debut (self titled) album by K. Fenrir has been released, containing nearly 30 minutes of harsh industrial noise mastered by yours truly. This project was both an interesting experience in mastering noise along with learning how to use completely brand new equipment and workflow of mine. It was both nerve wrecking, hair splitting, and extremely enjoyable to get the hang of it, and I am quite pleased with the end results.

Head over to K. Fenrir’s bandcamp and show him your support.

Do you have a release in need for fine tuning and mastering? Get in touch.

Isolation Game Jam 2014 18 May 2014

On the 25th of April a group of people from all over the world appeared on my doorsteps, with bags only holding clothes and computers. Ready to make interactive experiences at the Isolation Game Jam at Kollafoss. It was (most likely) the first ever game jam to be hosted in north Iceland, and to be honest, probably the first ever game jam to be hosted outside Reykjavík. It was also the first event by the newly formed organization Leikjasamsuðan.

It wasn’t until Kyle Halladay from Canada arrived first on the farm I realized that this was really happening. I don’t know how but I somehow managed to trick 7 people to travel over half the atlantic ocean (from both sides) to make games on an old abandoned farm almost up in the highlands of Iceland. For those that are not familiar with the topology of Iceland. There are only settlements around the coastline of Iceland as the center is pretty much cold and inhospitable wasteland. I live close to the so called highland borders. Oh, and did I mention that the farm we used, Kollafoss, has no internet connection and barely any cell phone reception at all?

Kyle Halladay traveled from Canada. The Romanian Horatiu Roman traveled from his current outpost in Denmark. My old Gamedev classmates and friends Karl Bergendahl, Karl Lorant and Minnamari Helmisaari traveled from Sweden. Ágúst Karlsson and Ben Mathis of Snjohus Software took a quick ride from Reykjavík and brought their bunny mascot with them and a bowl of candy. (Snjohus Software was therefor the surprise sponsor of the Isolation Game Jam). Although with so few people we still maxed out the space available and in retrospect I feel like this was just the right amount of people.

After a lot of chatting two themes were chosen, “Electric Forest” and “Lost in Body Space”, although those were picked for inspirational purposes only. In hindsight I would think those would had not been needed. Horatiu Roman pointed it out to me that the landscape would had been enough of an inspiration. Perhaps that’s an idea to experiment with next year. Some beverages, some good clothes, and an evening on top of a nearby long dead volcano lavatap called Borgarvirki. (the panorama above is taken by Horatiu on top of said lavatap). Or perhaps a relaxing bath in the natural hot spring of Hveraborgir up in the highlands?

The schedule of each day went something like this: We woke up in the morning, had breakfast, took a little walk around the area, had some lunch, and then sat down and started working. At 18:00 we usually stopped and prepared a feast which usually resulted in us sitting by the table afterwards for hours chatting. In the evenings we did some gamedev work but it usually spiraled into chatting, drinking and screaming at each other as we impaled our computer avatars with arrows in Towerfall.

Dreampipes

Ágúst and Ben made Dreampipes for phones/tablets with Karl Bergendahl and myself contributing sound effects to the game. It is not available online yet but something tells me that if they decide to finish it, it will pop up at Snjohus.
[Click here for a screenshot]

Abstract Forest

Minnamari Helmisaari made a really interesting visual experience which she called Abstract Forest with sound effects from Karl Bergendahl.
[Click here for a screenshot]

Active Mike

Kyle Halladay built Active Mike, a game about shouting at your computer with sound from Karl Bergendahl, and visual contributions from Minnamari Helmisaari and Karl Lorant. There’s a build up on Karl Lorant’s blog.
[Click here for a screenshot]

Sheepy

Horatiu Roman was inspired by all the sheep that he made a game about sheep herding the Icelandic way. With explosives obviously. Ben, Karl Bergendahl and Minnamari Helmisaari contributed to that game, Sheepy. The plan is to release it on Google Playstore in the near future.
[Click here for a screenshot]

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