Category Archives: Journey

Is This the Final Frontier?–Starting Trauma Informed Therapy

It’s not the first time I’m in therapy, I’ve been to more therapists and psychologists than I can count since I was 12. I do occasionally try to count them, but some have been pretty much repressed from my memory at this stage, and I have actual memory loss on top of that.

As I began to realize I probably have C-PTSD and wanted to unravel that mess, I realized that I probably needed a trauma informed therapist to help me figure it all out. So I reached out to a fairly local one, and asked for their availability.

While I wont be talking about any specifics about our sessions, I will probably end up writing about things around it, things it made me ponder in the inbetween and made me realize about myself. Maybe? Or I don’t publish this, I don’t know yet. I’m probably going to ask where the limits are. But instead of distracting myself about those details… let’s get some thoughts down.

I think I expected a lot more to happen already in the first session, probably because when growing up every time I had a first session with a therapist I had to go through my life story to catch them up, and it was often involving a lot of crying. This time that’s not quite what happened at all, so I came out of it tired, but not totally exhausted. I still tried to give myself grace and rest a lot during the rest of the day though, so there was TV shows, and naps, and gaming, and cuddles on the sofa with partner and doggo.

Putting word to things you know but can’t talk about is incredibly valuable, and knowing that I’m in a safe space where I can do that, and figure things out is also very good. I am very privileged that I can spend the little income I have on going to see a therapist privately, and my brain is like “It’s only x / month”, while in the past that would’ve been way too much money.

In our first real session, but our second meeting, I was able to ask for something I needed, twice. That felt revolutionary. I often just believed I had to deal with what I was given, but this time I realized that, no, this is a give and take realtionship, and if I don’t let them know where my limits and boundaries are, it’s going to be hard to have a working relationship with them.

It does feel significantly more different than it has in the past, maybe I’m just in a different place, and have other pieces of my puzzle in place, like my ADHD diagnosis, and my pain diagnosis, so I can be more goal oriented to keep moving forward, instead of confused about what’s wrong with me. And now I get to pull at some of the threads to see what’s what around the things I already know of, and see how it overlaps (yes I love my mixed metaphors, deal with it).

I want to talk about the boundary I set with my thereapist, but I want to wait for a while as well. So that’s what I’ll do. In another post maybe, in the future.

Before moving on I want to say this: You can make great things happen if you allow yourself to take just a tiny bit of space, with the people who are supposed to help you, even when you’ve had really bad experiences with it in the past.

A few weeks have passed since I wrote this first draft, and I’ve since asked my therapist about their thoughts about me writing. I had kind of created a blockage by not asking, so I didn’t write nor edit even though I wanted to.. The result and response was perfectly in line with my needs, luckily! So, I will definitely keep writing and then decide how much I’ll publish.

I think I celebrated a bit too quickly about not feeling too bad after the first meeting, or it changed after the second. I kind of don’t know, because my sense of time gets really screwed up when I shut down. This was the long way to say, I’ve pretty much been in quite a bad state since the week following that first meeting, and had some other stuff come up too causing some stress and anxiety and exhaustion. It’s definitely something I think I could talk about more, and have on my Mastodon account.

At this stage it became important to me to give myself this space to feel like shit, while also trying to take care of myself and our household. Over the past few weeks. This interlocks a lot with my physical disabilities too, which occasionally makes it tricky to untangle what’s going on and how to manage it. Because I know that when it’s only mental health things affecting me, going outside is one of the best medicines, but when physical health gets in the way of that it can get really difficult to come back to some semblance of normal, whatever normal looks like for you.

I was reminded that I’d spent pretty much the past year always focusing on my baseline, to such a degree that I forgot I was doing it. It just became routine, even if it had its ups and downs in regard to success, I always kept coming back to it with a lot of compassion for myself when I was faltering, because the easiest way to come back was to give myself that space, that break.

Another subject for another post, again. So yeah, there’s a lot to talk about, and I expect we’ll keep talking about it over the coming months and years as I continue therapy and untangling the mysteries, and the traumas and processing and learning to forgive myself for the struggles I’ve had.

I am hopeful that this therapy will help me greatly, but I doubt it’s a miracle pill, it will require a lot of work, but I truly do appreciate being in space where I can slowly work through things at the pace that feels right and safe for me until we get some more breakthroughs and then work through them.

Fearing getting better

When I lost my memories I also lost a lot of grudges, and I lost a lot of what I considered the negative parts of myself. I lost the ability to be mad for any extended period of time, partially because I just didn’t have enough energy, and partially because my brain just let go consistently.

As I’m slowly healing, over the years I’ve been given little boxes to unpack with memories, at least that’s how it feels. It’s like my brain has packed these memories away, and now that we’re moving house (both figuratively and literally) I’m finding boxes to open up, and realize that a lot of things have changed.

Like, I’m aware that I’m a very different person. I know I’m calmer, and I know that if I’m mad at you today I probably wont even remember it tomorrow. If we’ve had a bout I’m very unlikely to remember it, and if I remember it the details will be fuzzy.

Some people have used this against me, but mostly I’ve not surrounded myself with people who would use it against me under any circumstance, counting my blessings here.

Yet , I find myself fearing the possibility of that more angry me coming back as I recover more brain power and memories. What if I am only this calm because I can’t do anything else, what if I heal those scars and regain the ability to feel different again?

I don’t necessarily like the person I used to be, and I’ve told a lot of the people who’ve gotten to know me after (a year after I had lost the biggest chunk, and was still suffering quite a bit) that I don’t think they would’ve liked me back then.

I see glimpses of her when I’m tired and lose composure, I guess is the best way to describe it.

Composure.

I’m wondering if what started as memory loss, is now more calculated, yet I don’t think it is, because I still suffer a lot. but I do prefer this me to the old me.

It also means I’m afraid someone will “tell on me” and share something that I don’t remember, or have very hazy details on. But that’s not entirely true either. I know how I would handle that now if it happened. Their experience of whatever happened will be true, to them, and I can’t nor should take any of that away from them. I can offer my apologies not expecting forgiveness, and explain in what ways I’ve changed, but it’s rare that that’s anything anyone in that situation would want to hear. But I’m okay with that.

People do change, but that doesn’t mean their old behaviour shouldn’t be called out. It also doesn’t mean they have to be hounded about it, and expecting someone to show you change can be tricky too. It’s complicated and a bit I don’t think I’m able to elaborate on now, so let’s leave that thought unfinished.

I don’t have to be in connection with any of the people who knew me back then, just as they don’t have to be with me. A few I still am, and I think our relationships are better now than they were then, which is a blessing.

I have grown, I’m able to handle my RSD a lot better. And I got my ADHD meds, which help me immensely in that regard, and others. I will still get that initial bout and hit of the rejection sensitivity, but then I can calm down within minutes instead of hours. In the past those hours could lead to me ruining relationships I had with people who knew me.

Back then I didn’t know what I didn’t know and now I still don’t know what I don’t know, but for completely other reasons. I’m actually proud of myself for how much I’ve grown and learnt over the past few years. Not even believing that I will ever be perfect, but I will keep trying to do my best, and keep my mouth shut a lot more than I used to.

So. I guess the fear is unfounded, but today I got to put words onto it. And I got to face the fear. I got to see that maybe I didn’t only change because of the memory loss, but it also gave me a clean slate, so I could get a fresh start and rebuild into someone I wanted to become.

Finding myself in the darkness

This was written in the end of October, but I was unable to edit for quite a while. I didn’t publish this until today, because I wasn’t sure if it was going to stick, if I was going to find myself crying, wanting to run away, and die again. I think I wanted to future proof, before sharing this text that isn’t advice, especially since so much I talk about comes out as advice.


I keep having mental breakdowns. And it’s been getting increasingly harder to come out of them. I’ve felt a need to escape, to use all my remaining energy to just run away. From everyone and everything. All the while knowing that I don’t want to run away. So I stay and I suffer, unable to understand what’s going on with me.

Other than the glaringly obvious, that my meds is doing shit with my brain. I need to figure out what exactly. I know bits and pieces of it, it’s my new meds which are supposed to change things with my brain chemistry, there’s a reason I’m on legal speed. *laughs in ADHD* but also it seems to interact with my hormones and I don’t know how much of that is what. Then I have my anti-depressants on top and I don’t know if I need to adjust them down or up. If I had a choice I’d prefer to adjust them down to find out where I am without them but on the ADHD-meds. But that also feels increasingly dangerous as I’m currently in my worst depressive episode in very many years.

As you can tell, there’s a lot going on, and as you can tell by recent posts of mine, my mental health is not doing too well. But I’m alive, which is an achievement all on its own.

I’m slowly putting all the pieces together. Constantly referring to my life and my experiences as pieces of a puzzle. It’s tricky, and nearly impossible to figure out all of it in one go. On some days I’m living for the challenge and finding joy in pulling the threads—all balled together—apart, while on others it’s driving me mad.

I’ve always been an over-sharer, who a lot of people have looked at and laughed while I’ve been sharing my weird stories and experiences. I’ve been encouraged to get drunk and tell my tall tales, while everyone else in the room was nearly sober. And my friends giggled at me as I was having trouble getting from point A to point B. I would always go from A to D, maybe via F back to H, the C, I , and completely forget about B. This was my ADHD. My brain doesn’t work like everyone elses, and I just didn’t know until three months ago.

So yes, I’m going through the worst depression of my life, but it’s different this time, even if it’s just as painful. I have so many more tools in my tool box, at the ready. Unfortunately, I also have ADHD, so I don’t always remember what’s in that tool box, or where I put the toolbox, or I forgot to put the tools in there at all. Even though this is a metaphorical box, I have created a physical one, where I write down things on little cue cards, and they are neatly organized in a box. It took me 7 years to even start writing them since the idea came to me, a while before I even met my current partner. I have had the box since we started dating, I have had some of the cards since before then.

You see, I’m extremely self-aware, and sometimes I get completely lost, within myself, trying to fix things, trying to fix myself and people around me. If I’m trying to save someone else I don’t have to worry about myself, you see.

But sometimes, I get so lost that I have completely forgotten that I know how to swim, and that I know how to love. I’ve been threading water for so long, for so many years, that when the water is shallow enough for me to stand in, I forget. I don’t know. I’m that screaming child, because the water is too deep, and my parents are letting me go, and then I realize that I am able to stand in the water. That screaming, aches in me when I see it. I identify with it on such a deep level, because I keep getting so lost, unable to see the lighthouse at the shore line because I’m only looking straight up into the sky, and the sky is dark with clouds. And I’m freezing in the water. Ready to let go, and stop threading water.

I’m mixing metaphors, as we do, but I think you can understand how easy it is to just not be able to identify your situation. Over the past few months, I have been quite sure that I was going to die, not because of Covid-19, not directly, but because of my, what feels like a, very broken mind. I did not feel like I could see any way out of the darkness.

I didn’t hear my partner, asking me if I was okay. I’d always just respond with “yeah, whatever” or just not be able to say anything useful. A lot of “I don’t know”. Just saying I don’t know, is… usually an indication that we’re not okay, but we may not possess all the words yet.

I knew I wasn’t able to talk with my partner about how I was feeling inside, but I didn’t know why. I didn’t understand why. I thought this would be the end of me, or at the very least us.

I kept crying, but I didn’t want to cry. Crying is annoying, it bothers others, and I didn’t want to be a burden anymore. I am tired of being sick, and sick of being tired. I struggle to take care of myself on a good day, and I have so so many bad days.

What did I do to find my way back? I… I don’t know how it happened, I just know that it happened. I was cuddling with my partner, talking about my last bout of leaving the house and sitting on a bench, out in the cold night, not the rain this time. We had not been cuddling much in a very long time, for reasons. In the week prior I had began braiding his hair, giving us a few minutes of intimacy before he’d go to work every night. That ounce of intimacy reminded me, how good oxytocin can be. Yet, I had a complete breakdown that very same weekend. Again. So I was seeking comfort, before I could formulate what was going on. Saying that I was not okay.

As he was drifting off to sleep on his day off of work that week, with me right next to him I said, that I felt like I was invading his space, if he was falling asleep, and I should probably leave. He said to me, something that helped me find my way back again out of this darkness:

I’m falling asleep because I’m comfortable, I wouldn’t fall asleep with you here if I wasn’t feeling comfortable with you here.

And I realized, that I had locked myself into my head, I had created a distance by withdrawing because I thought that was what he wanted and needed. He had never told me to leave him alone all the time, but I thought that him being in his room meant he wanted space to be alone. So I left him alone, as it was the least I could do given that he works and keeps us safe and alive when I can’t work enough to pay my own bills let alone ours or any food on top of that.

No, I had decided that he was withdrawn, so I kept withdrawing. I didn’t ask to watch something together, I didn’t ask to sit together, I didn’t ask to cuddle anymore.

When he said those words I realized that I wasn’t alone. We’ve been together for 7.5 years now. We’ve been through some of the worst things in my life, but we’re still here. And we’re still building our home together.

I thought I wanted to edit this last bit out, because it was way too private, but as I read it again, I realize that I need to leave it in because it was important. Important in order to understand how easy it is to get obsessively lost within yourself, not seeing a way out.

I think it’s valuable to reach out to your friends. Whether you see them struggling or not, whether you’re struggling or not. Remind them and yourself that you are not alone, and maybe even help direct each other to the shore. The answer isn’t always “you’re not being treated right”, but it’s also not necessarily “you’re crazy”, it can be somewhere in between, or way out of orbit. This post isn’t a recommendation, or a solution for anyone else, this was my solution, for me, and it may not stick, but I did feel like it was a proper breakthrough in the most positive ways.


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Grief: A love letter

I still love you. And I miss you. I dreamt about you last night, and in the dream we found our way back to each other, even though my awake self know that will never happen. So naturally when I woke up I was incredibly sad about it, and writing this I’m crying about it.

I cherish the time we spent together, the lessons you taught me about people, life, and the treatment I deserved. You taught me that I deserved good people.

We weren’t supposed to love each other, it wasn’t in the agreement. But so quickly we both did.

We comforted each other in our bubble. Albeit temporary, it felt like it would last forever. Why would something so good ever end?

Back then it didn’t really end in a clear way, maybe that’s why you’re still so close to my heart. Why I still miss you when I think about you.

The definite end happened 1.5 years ago, and I don’t think I processed it. My life was so busy, so renewed full of energy, and I was reaching out to a lot of people I’d not been able to talk with in many years. You were one of them.

I could speculate on my own faults, but you asked me not to. I never took the time to grieve losing you, simply because my life was so busy then.

So this dream, this specific one, where we recognized that we’d not been able to reconnect for a while hit me hard. My dreams are often very vivid, and you were with me, we were together again, and when I woke up I lost you all over again.

Would it have been different if I hadn’t moved away 10 years ago? Or would it just have ended earlier in a much more painful way?

On our first and only anniversary, you said something wonderful to me. And that was that you wanted us to be able to keep our anniversary as a celebration of our friendship, years down the line.

Today I don’t even remember what date it was. Was it January? February? March? I know it was early in the year.

I know our relationship developed into more than it was supposed to, and it was hidden from most people. Some people even tried to protect you from me at gatherings, because they didn’t know we were together. They didn’t know how good we were together. Something I can both laugh and cry about today.

I still love you, and I miss you. And today I grieve.

I didn’t understand until a day later, as I’m finishing writing this and as I was online reading other things about grief. Grief is love, and I love you, so I grieve that I’ll probably never see you again.

Yesterday I kept fearing that something happened, this immense overwhelming feeling that you weren’t okay. But knowing that I shouldn’t reach out to you, it just became so intense. I couldn’t stop crying, and I didn’t know why. I didn’t understand yesterday, but today I know.

I’m grieving. Because I loved you, because you’ll always be in my heart. I’m grieving because I know we both think of our time together with love and cherish it. Cherish the lessons we both learnt about ourselves at that time. I grieve because seeing you again, reaching out to you, would risk tarnishing those memories.

I don’t think about you all the time, it’s not that kind of love. But I think about you, and hope you’re well and all the people around you are well too.

Our paths crossed for a few years, and it brought something we both needed to our lives, and I will always remember that.

Thank you. For everything.

Love, Marie.


Header image: “Sjö” by Magnus MWW is licensed under CC BY-SA 2.0

What a year 2019 has been!

This has been one heck of a year, for a lot of reasons. Very few things went as planned, but over all it has been a very giving and interesting year. I want to sum up some major plot points in my life, and reflect on it slightly. This may end up much longer than I intended, but here goes!

January through March

The beginning of the year was kind of hectic, I was still studying while very fatigued and I managed to hurt my arm just before an exam which made everything extra hard. I spent time with some of the other students who failed that same exam and we did our best to get through the re-exam. This hiccup meant I wasn’t getting my student loan in the beginning of the year, which was a bit painful. By a bit I mean very painful. Being without money caused a lot of internal, if not external, panic.

In early February, which was when that re-exam took place, my partner went home to the UK for Lunar New Year. I had completed my Bachelor’s paper the spring before, but needed one more course to complete the actual degree, I took those points during the fall. So, by now I had sent in to get my certificate and it arrived while my partner was away. It had happened, I had finished my degree!

When he came back to Sweden one of the first things he said to me was that he wanted us to move back to the UK. It was something we’d talked about a few times and decided against, until now (then). We had just found out that his sister was pregnant, which was also one of the reasons we decided to move. It’s very rewarding being around infants and small children in general, so this was a big draw for me.
Another one of the reasons for us not moving back to the UK was that I had not finished my degree yet, which was why we lived in Sweden to begin with. With me receiving my degree certificate, it meant that I was now done. Even though I was currently enrolled in studies for a lot of practical reasons (but that’s another post which may or may not happen).

In January / February I also worked on reviving the ForkTogether project with a few other people. We published a blog post about it, where we announced the new name, Florence, and got to work. This blog post will probably not talk much more about Florence, but it’s a project that’s very dear to my heart, and something I will keep working on in 2020, as well, and our latest update is here.

Overall my health was pretty bad at the beginning of the year, I had very low energy and I couldn’t really do much, walking anywhere left me exhausted unless I wore compression socks. Over Christmas, my mother had offered to buy me compression tights to make my life easier, but since I had been considering going to see a private doctor I, in turn, asked her if she would be willing to put that money towards helping me go see one, as a way to look for the underlying cause instead of just treating symptoms. She agreed. I don’t remember when I actually made the appointment, but I made it for April 9th, a day before my birthday. And it was in Gothenburg where my mom lives, so I planned to go see her as well.

I don’t remember much of what I did in March. I know I was studying this term as well, but I don’t remember what we did. I’m going to assume I was trying to study as much as possible, while planning for moving to the UK, and spending time with my partner before he went over there. The plan was that he’d leave early April.

April, and the beginning of change

April came, he left to the UK a week before my appointment and I went to my mom’s place. We went to the doctor together, who had scheduled two hours for me. I was finally getting checked out properly for the first time in probably 7 years. Yes, the care centers had done some small things to help, but a lot of the time they just let things slide and we had to start the process all over again, and most of 2018 I had just given up on the Swedish health care system.

My appointment was in the afternoon, so I had missed the slot for some of the blood tests, and they sent me home with a kit to bring to any lab at any clinic. However, this did not go nearly as smooth as I would’ve liked it to. I ended up having to go to two different places and none of them knew what to do with the kit. Turns out that the instructions got lost somewhere along the way, they were supposed to be inside. Eventually I got the blood drawn and I got to go back home and rest.

At the appointment my new doctor and rheumatologist had quickly diagnosed a few things which felt obvious, EDS (Ehlers-Danlos syndrome), and a high possibility of Fibromyalgia, she suspected psoriasis but mainly in the nails. I was also given cortisone to rule out other rheumatic issues. The blood tests would later show that I also had hypothyroidism.

Towards the end of April I received medicine for hypothyroidism, Levothyroxine, and it started making a difference within 3 days. Which was when I noticed it by biking. Biking had been something that while it was easier on a lot of my other body parts, like knees, hips and neck, it still always felt like I was dying. Not because I couldn’t breath, but rather because I didn’t have energy in my muscles. That said, breathing was hard too, but more like a weight on my chest. I had never been able to fully put it into words, and most definitely thought that I had worn myself down so much that I couldn’t bike because I had 0 fitness. This was something which had stayed with me for 5 years, at varying degrees. Logically I should’ve known it wasn’t my fitness level, since in the beginning of this happening to me I was going to the swimming pool regularly. (I could go on a tangent here on how I most likely have POTS as well, as it’s common together with EDS, which was somewhat alleviated by the swimming pool because of the extra pressure it put on my body, remember me mentioning compression socks?) Going to the pool was the few moments I felt sane. When I stopped going was when my health started to deteriorate more, and with less swimming, and less relief it was harder to go back to swimming and get that relief. Most of this I did not connect the dots on until quite recently.

So, it was the end of April and I could bike without feeling like I was dying. Mind you this was just the first step in getting stronger, as it improved over time. I had two other benchmarks which really helped me realize what a difference it made, the 2nd one is completely lost to me right now, but the 3rd one was biking on the highest gear without problem (I had been biking in the lowest gear for the past 3 years, at least).

In April I had also gotten in touch with someone who needed a dog sitter, and as such I met Hamilton. He became a staple of my daily life, and also helped me with some of the benchmarks in my health. I was still sick when I had accepted this, because I felt like if I’m home all day every day, unable to do anything, I may as well do that and make a small amount of money.

May and meeting Hamilton

In May I was still trying to stay up with school, and study. However about halfway through the month I threw both hands up in the air and said “FUCK IT, I need to live, and I’m finally able to do so”. I came to the realization that I had been residing in Malmö for 8 years, but I hadn’t LIVED in Malmö during most of that time. Now was my chance.

Most people that know me know that I’m polyamorous, it’s not something I hide, but for the sake of this particular blog post, I am not going to chronicle what I got up to once I got some underlying issues treated, and got energy back, while my partner was in a different country for 5 months (which is how long we stayed apart). I will however say that I was quite lovely to feel my sex-drive return, and me just being kind of high on life and willing to go out there and meet new people. And for the love of everything that is holy: Do not read this as I only went out to meet new people to have sexscapades with.

Anyways, I made friends with some more polyfolx, and went to two meetups, one which I arranged (for women and trans folx). The first one, the pub meetup, I met up with an enby whom I become close friends with on Facebook first. We talked about lot of things we had in common. And slowly it turned out that we were both the same age, and born in the same city. We doubled checked the early background, but we had not crossed paths in our youth, however we could connect to childhood memories with each other because of the spaces we had occupied while not at the same time. We had even moved the same path to end up in Malmö, and it was just very serendipitous moment to connect with them.

Towards the end of May there was a Poetry Slam competition in Malmö, the Swedish Championship. I went to that event alone, for 2 of the days I mostly hovered, and the 3rd day I dared to speak with people a bit more.

One of the evenings I went and sat at the bar at the afterparty afterwards, and just relished in the feeling that I could sit in a crowded and loud bar and not get completely exhausted from it. So I sat there alone and wrote for a few hours before I decided to go home.

The poetry slam did inspire me poetry wise, which is to be expected. I wasn’t able to get a lot of the inspiration channeled into anything, probably because at this point in my life I was all over the place. I was just about recovering energy and able to experience life, and after doing one thing I was always ready to go on to the next thing.

The last evening I made another friend whom I’m definitely still staying connected with. Another serendipity, we only started talking the very last night, but seemed to get each other very well and understand certain ways that the other thought or experienced certain types of things. It’s hard to explain, but I feel like we both managed to share an experience with each other that the other understood well.

The mornings I spent with Hamilton, and the afternoons and evenings I spent at the Poetry Slam. While the dog may not be written about a lot, he became very important to me during these summer months. He kept me company and forced me to rest when I needed it to. He’d insist on me sitting on the sofa with him instead of the computer. So I’d often sit down with a movie or series and have his big head in my lap. He was with me about 2-3 times / week.

June, July—Diagnosis confirmed

Now we’re up to June, as the Poetry Slam ended just at the beginning of June, and the summer really began to hit us. Very warm days started to come on, and I realized that Malmö is a very underrated Beach City. Like it’s less than a 20min walk from the city center (or central station) to the beach, by the ocean! And I began swimming regularly, almost daily, even starting a group on Facebook just for women (and trans people) looking for other people to go swimming with.

Now, I want to reconnect to some of my medical stuff that I was going through. I was following up with my doctor in early June, and while the cortisone hadn’t really done much while I was still exhausted from not getting energy from eating, I later asked my doctor for another course of the cortisone. This time my pain levels went down significantly. Unfortunately, while I was on this cortisone course I caught a really nasty cold. I had gone swimming in the ocean, which probably wasn’t the best idea, but I was just so happy to finally be able to live, and I had trouble stopping myself.

This cold lasted for almost a whole month (there’s more details here, but I lost my voice for 1.5 weeks among other things, and it wasn’t just one cold, but rather one cold and then a bacterial infection, bla bla), from end of June to mid-July, by which I received a course of antibiotics from my doctor in Gothenburg. I had noticed that the infection made most of my pain go away. And she was like, “okay that confirms you have an auto-immune”, at this point I was diagnosed with Psoriatic Arthritis.

I got prescribed Etoricoxib to take down the inflammation and reduce the pain. I think I was lucky to get prescribed this immediately, it happened that way because I already knew that my stomach was too sensitive for long term Ibuprofen. And considering I had just about recovered my stomach after 5 years of suffering with issues, I did not want to screw it up again. It actually worked very well, even if I’d complain in the afternoon that the pain meds stopped working. But days I did not take it were a lot worse, which helped keep me humble. It was prescribed to be taken every day.

So, the antibiotics helped me, and I began feeling better quite soon. My mom had noticed major changes in how much energy I had, but was still often very worried. However, she had her own benchmarks to notice what was up. She’d reflected on that after I was out and about I was still able to go with her to the store. In the past I’d rarely even been able to be out and about while visiting.

This had marked my 3rd visit to my mom’s place since the first doctors appointment. And it was lovely that I had the kind of energy where I could just pack up my bag and head to her place on very short notice. And I could go visit a lot of my old friends.

End of July, Seeing Old Friends

Speaking of visiting friends, in mid-July after this appointment and antibiotics I went on a big trip to visit friends and family, because I wanted to take the opportunity before I moved to another country.

For this trip, as I didn’t know if I was getting better yet, I only booked one leg of the journey at the time. I started in Gothenburg, since I had been to see my doctor. And over the next 2-3 weeks I went through 5 cities: Kristinehamn, Västerås, Stockholm, Falun, Gothenburg again, before I returned to Malmö. I had originally planned to go through Uppsala as well, but those plans had to change unfortunately, lucky I didn’t book all tickets in advance.

Through these cities I was visiting a load of old friends, catching up, going to museums, attending my first 40th birthday party of one of my friends, visited my grandmother’s grave, strolled through Stockholm on the hottest day of the year (thus far at least), went swimming a lot, worked on my tiny netbook (which a friend helped me install an ssd drive and Linux to revive it slightly), I got to spend time with my family, both my mom and my dad (who live in different cities) and my sisters, their family and kids.

At this point I was doing (and had been for a while) so much every day or every few days, compared to before I got any medicine, that my sense of time was very skewed. I had gone from being able to do one thing a week, usually going to class, and then spending the rest of the week at home, and now I easily did 3-5 things in a day, and rested to keep my balance. The biggest difference when it came to resting was that it could be enough to just lay down for 30min, in order to ground myself, or watch an episode or two of a TV series, before I was recharged enough to head back out on more adventures.

August, packing to move

Finally back in Malmö, it was already August, and it finally hit me. I was moving, and soon. I had only 3 weeks left, and it was time to get a battle plan together, I still hadn’t really started to pack that much stuff. At the same time I needed to wind down from my trip.

I honestly do not know how I managed to get through the last push of packing, selling and moving. I was lucky with a few things, I got the bed sold for a decent price, and a friend was just moving back from Sweden after a few years abroad, so she came by and bought a lot of my stuff.

There were some hiccups with the moving company, who wanted to come after I needed to be out of the house, and some fun things like that. Which were incredibly stressful.

At the end of it I just got through it thanks to pure stubbornness. I cried through some of the last of it. But the very last night, I was with one of my new friends, and we had really good food and watched a movie together (at their place because I was staying there), and they helped me just wind down, now that it was all over.

September, visiting Prague

In the middle of moving I went to Prague for a week, before I went to the UK. I was in Prague for 2 conferences, first something called Rebooting the Web of Trust, and the other conference was ActivityPub. This week I got to spend with old and new friends, but none of whom I’d ever met before.

It was an interesting week, which I definitely should’ve written it’s own blog post about, as I’ve not actually done much reflecting on Rebooting the Web of Trust, yet. And we’ll get to in this blog post why I haven’t nearly written as much as I would’ve liked to this autumn.

I made two very good new friends, people whom before that week was even over felt like I’d known forever, and they seemed to feel the same thing. And the other people who I spent a lot of that week with definitely are closer to me now than they were before.

I think one of the biggest things for me this week was, balancing and recovering from the moving stuff, even if I was in the middle of it, and busy with these two events. I was definitely testing my boundaries, and stretching them, in a way which was definitely risky.

I was invited to come to Prague as a speaker for the ActivityPub Conference. And it was a great experience meeting everyone, as well as finishing off the week in Prague with all these people working on different things within the same space. I even wrote a really big blog post about it.

Entering the UK

I arrived after a really long week, and a long day, at the Manchester Airport. In Prague I had tried to get on the wrong plane because I was just completely drained, and then I started crying because… well I was completely drained and stressed out. Luckily I caught the right plane, and I was finally seeing my partner of 5 years, after being apart for 5 months.

When I first arrived I just slept, for a week probably. I was just so tired. I kept being tired, and even into October I wasn’t feeling better. And I began to worry that I had screwed up, that I had burnt myself out even more by doing all the things I did during the summer.

Lucky for me it turned out that I was on a too low dose on one of my medicines because me and my doctor had experimented with a lower dose, but because of the move we hadn’t followed up to see how it was going. It was one of my anti-depressants that had been on a lower dose for quite a while, and I believe that the additional stress just made it harder to recover without that extra crutch. Towards the end of October I upped the dose again, and started to feel better.

In October we also had family wedding celebrations to attend to, and we both had it close to where we live, as well as going to London for a weekend. This mostly took up most of October both time and energy wise.

November, December, cold season

Early November the entire family caught the flu. Me and my partner caught it worst, and were more or less strapped to bed for over a week each, and he took much longer to recover than I did.

In early December I caught another bout of a cold, and I slipped down the stairs, and was sick for about 3 weeks. During this period, I was so tired of being sick, but I wanted to not repeat the summer’s mistake, so I did my best to rest properly and get better.

Just before Christmas I was finally rid of my cold, and able to spend it with the family (my partner’s) here in the UK, instead of going home to Sweden like I had planned. And on Christmas day the entire family got hit with the Winter Stomach Flu. This lasted for about 3 days.

And this is literally where the year ended. The last 3 months of it I was very low energy, and sick most of the time, or drained due to too low medicine.

If any of you wondered where I went during those months, that’s pretty much the explanation, and it’s made some of my projects suffer, and me emotionally suffer as well. Because I’m happy about being here and meeting a bunch of my new and old friends here in the UK as well.

Hopefully 2020 will be a much better year, and we’ll see more of each other now.

wibbly wobbly timey wimey

What’s been on my mind lately is how much my sense of time has changed recently. By the mere fact that I’ve gone from doing maybe 1 social thing in a week, to doing between 2-3 in a day. Which makes one week feel like several weeks, because my mind has not adapted to this new sense of time yet, this new development, how much I actually do in which span of time. And the stupid thing is, and I call it stupid because it is frustrating and just like even though I’ve had this change which should be for the better, it’s not really, it feels like it’s causing a lot of problems, while it’s the opposite of the problem I previously had, now the problem is the other way than it previously was.

Let me just explain what the old problem was. While I’ve been sick for the past few years, I had a really bad sense of time, for a few reasons. One of the reasons was that I would dissociate for hours, not whole days, but whole chunks in a day, several days in a row, where I just kinda disappear. I’ve referred to this in the past as losing time, and I’ve been asked if I have DID, which I’ve explored, but it doesn’t seem like that’s the fit. But I’ve also explored other things, there’s this possibility that I’m on the spectrum. And what’s really spoken to me recently is ADHD, because it presents differently in women than in men, and this is why I can never stick to one story in one straight line, my mind kind of gets distracted and I end up somewhere else. That actually makes writing really hard sometimes, because I can’t focus in just one place, I have to keep going off track. [This whole post was recorded first, then edited into a functional text with some distractions removed, and some kept but crossed out].

(So sense of time, let’s go back, anchor. *sigh*) While I was sick, for the past 3 years, because before that I was going to school several times a week, and I would, I kind of knew how time was passing, with the help of going to school. Some of these incidents have been before I started studying, mostly because I was sick then too, but when I was studying it gave me a pretty clear structure, every year, or every term you’d have a new schedule which would help me be aware of where I was, and where things was in that time-frame. In the past three years, while I’ve been recovering from extreme fatigue, I have felt like something that happened a half a year ago, like 8 months, or further away, still felt like just a few weeks. So I could come back to someone to talk about that, like it was yesterday, like it was last week. For me I had finally gotten to a point where my mind had successfully processed this information, to be able to have the followup conversation. Like say, when something bad happens between two people, right, you want to come back and apologize for what you’ve done, or figure out if there’s something you can do to discuss it, etc., but when you do this after 6 months, when you both are supposed to have moved on, because it was supposedly fine, you end up kind of dragging up old things which would’ve been better left alone. Which is a problem.

This didn’t happen very often, but it happened a few times and caught my attention. However, because I was very low energy, it was kind of hard to talk about and it didn’t happen very often, because I wouldn’t actually have a lot of interactions with a lot of people. In the meantime I did realize that it was happening, and I made a mental note of it, and try to gauge it a bit differently.

Fastforward to May of 2019, previous month, because we’re now in June. I went from being able to do 1 thing a week, like I said earlier, to be able to do several things in one day without a problem.
Thanks to the medicine, Levothyroxine, Levaxin (svenska), which helped deal with my hypothyroidism, which actually gave me physical energy for my body (my muscles). And apparently, I have for the past 3 years, done such a good recovery for my mental health that as soon as this medicine kicked in, I was ready to roll out. Just get out there and live life, and do things and get things done, and yeah… I .. Here we are. So I did, and with that in the past, these events, even if I knew it’d only been one night, even if I knew I’d only slept for one night. I’d done 3-5 things, which should indicate that it’s already been weeks, right?

Do you understand what I’m saying here? Suddenly my brain, which I know there’s a lot of plasticity in the mind, which is like the most fascinating thing on this earth to me. (This and deep sea, ocean, I… Are seas and ocean the same thing? Deep sea cretures… Anyways. Minds. The focus.) The time. The experience of time has dilated, I’m experiencing time time a lot faster, right now, than everyone else, because I am used to one week being a certain span in activity but one week for someone else would in the past have been a year for me. That’s how the difference feels.

And it’s really hard to like, I know I’m not the only person in the world who’s experience time differently. I think we have a lot of misconceptions about how time is, it’s always going to be subjective. And when your brain is constantly doing something, or constantly unable to do something, you’ll experience, feel and notice and think about that time so much differently than someone else.

I wanna connect this, with something I’ve been calling me being Hyper social. Which is where I’ll go out and meet someone, It’s fine, I’ll go home I’m a bit tired, and within a few hours I’ll be ready to go out again. I have always viewed myself as an introvert, so I’m so fucking confused right now, I know I still need to recharge alone. Get things down on paper is something I’m trying to use as a process right now. (Anyways I dunno, back to time, fuck if I know.)

Anyways, My sense of time is so screwed. I want to write something beautiful about it, maybe a poem, to get the nuances of what’s going on, and I want to write a poem about it. And how everything is just different, and how it’s impossible to show someone how it feels and explain, and like “hi friend, I’m sorry I’m spamming you”. I’ve ended up in a position where I’m spamming my friends almost 24/7 because it feels like it’s been a week, two weeks, 3 weeks, I’m talking with them again and again. I’m not asking “what did you do today” 50 times, but I keep having a normal conversation, like I would with my close friends, just send a message. “What are you up to? I’m doing x y z, bla bla bla, do you wanna do something?” but then when you’ve asked someone if they wanna do something, like 3 times within 5 days. And then you realize two days later, that it hadn’t even been a week. And this person had given you the clearest indication that they are not a very social person. They did not want to be very social, you could keep talking and maybe see each other once in a while, maybe once every two weeks, but that was it. And here you are having asked them if they wanted to do something, 3 times, within just a few days and talking a lot and just being like suggesting different things and like “but why is this person like withdrawing from me, I don’t understand, do you think I’m trying to be friends with you?” YES, because you asked 3 times in 5 days if they wanted to do something, when for you it felt like weeks had passed, and it had only not even been a week. When that Friday rolled around and I was like when I realized that it’d been so fucking long, I don’t fucking know.

Can I summarize this? Well, it’s a bit wibbly wobbly timey wimey right now. And I hope you can appreciate that. I still want to make a poem for it, but we’ll figure that stuff out later.


This poem was not sponsored by my patrons, but it could be in the future. If you would like me to be able to write more of them, feel free to head over my patreon and check out the tiers there, $2 will hopefully eventually start sending poetry straight into your inbox! (it’s a process)
Alternatively, check out my support page for more info.

It took 7 days

Before we get started here is some background information. I have finally been starting to get diagnosed, with the help of a private rheumatologist. This has yielded not only answers, that I have hEDS, fibromyalgia, and hypothyroidism, but also some relief thanks to medication (for the thyroid in particular). It’s that relief that I want to talk about today.


Today was that day. It wasn’t the 3rd day, where I finally had something tangible to compare how I was feeling to. Nor the 4th day where I again marveled at the idea that I could go through a day and do things without being too tired. Definitely not the 5th day, where this newfound energy allowed me to even consider the possibility to have an active social life again. And absolutely not the 6th day, where I was starting to get really excited about meeting new people.

No, it took 7 days, 4 if you account for the fact that it took 3 days for anything to happen in the first place.

It took 7 days for my body to play catch-up, with my new-found energy, which I will have you know, that I have not been pushing boundaries with.

It took 7 days, for my body to tell me FUCK YOU. Because I did small things like two machines of laundry, went out and sat in the sun for an hour with a new friend.

It took 7 days, for my body to completely reject the idea that having an energetic life again would be possible.

It took 7 days, for me to be reminded how precious this energy that’s returned to me is, and how well I need to take care of my body to continue living a life.

It took 7 days, for me to write a real blog post about a health update, as it required me to get hit back down on my ass.

It took 7 days, and even with the pain in every joint in my hand and fingers, I needed to share this experience with you.

It took 7 days, 4 days if you account for the first 3 days where I didn’t notice anything yet, for me to realize that having more energy isn’t necessarily a blessing.

It took 7 days, to be reminded that I have not been blessed with a miracle.

It took 7 days, for me to know that I am about to meet an entirely new life, and that I’ve merely just begun this journey.


This poem was not sponsored by my patrons, but it could be in the future. If you would like me to be able to write more of them, feel free to head over my patreon and check out the tiers there, $2 will hopefully eventually start sending poetry straight into your inbox! (it’s a process)
Alternatively, check out my support page for more info.

Mental health: Losing Time

I have lost a lot of time, both in the distant and more recent past.

I lost 3 years of my early 20s, as I got sick towards the end of my 19th year. I lost most of the year I turned 30, because I was in full time sickleave and I couldn’t speak or think properly for 6 months.

Since the first time, I’ve been occasionally better, I even worked for a while (a year, part time) and spent 4 years studying.

But I’ve also lost days, weeks and months at the time because my mind just shuts down. It’s a protective measure to keep me as healthy as possible, but it’s also exhausting. It’s exhausting because any time I think I have an ounce of energy I try to do those things I want to do, and my mind responds with shutting down.

It may seem like I’m here and active and social, but I also zone out and never really know what day or date it is. This is hazardous when trying to take medication to keep you balanced, trying to get your life back into order, or studying.

It affects my studying a lot as a week will have passed since we received our assignment to do in two weeks, which means that I will have to try and do it in half the time, which usually doesn’t work because my mind will shut down again if I try to push it.

Trying to work is a joke right now, that’s why I’m not trying, because I’d probably get really sick really fast. Yet there are projects which are close to my heart, and I like to get them going. Help them off the ground. But I can’t without it killing me, and I don’t want to feel like I’m dying again.

Yet here I am, feeling like I can’t go much further, and that the shut downs are getting worse. Now, everything up until this sentence was written a night when I was having a particularly bad PMS trip, and I’m not actually feeling like the shutdowns are getting a lot worse, they’re just not getting better.

I wanted to share with you all, so you can understand why it may seem like I disappear a lot, why I’m forgetful or don’t seem to have energy to plan anything. It’s also why I seem like I am a lot more talk than action. Losing time is one of the reason some actions don’t come to fruition for me, why some actions will take months or years.

This is why some projects can go very slow, because time kind of just fades away. However, this spring my goal is to be able to get a better grasp of the things I want to do, and make progress on them.

Thank you for reading.

Old Journals (for University)

Some courses have you keep journals, to examine your own thoughts and progress with the course. I think a lot more classes could benefit from doing things like that.

Today I found a 5 year old journal, from one of the first courses I took at University, which was Drama & Speech (but part of English Studies). What I want to do here today is share it in it’s entirety with you, as it was already digitized. Enjoy:

2013-09-03
First lesson. The goal of the lesson was how speech can improve with practice, but also daring to speak out loud. The first time you read a text it can be a bit uneasy, as you keep repeating it you get familiar with the text and get to know it. When you speak in front of a group or around people it’s very easy to get a bit quiet, especially at the end of the sentence.
We also got to try to open up our voices, with energetic exercises. It was interesting, even if the class as a whole still scares the shit out of me. Drama and public speaking has never been my strong suit, even if I still do the latter.
My weakness is definitely my own creative openness, I can be creative in my own time and alone but when around people with a set assignment and the premise of “Do this out loud right now” I really cramp up, and I just had to use my frustrations instead of a passion. I do however feel satisfied that I found an emotion to use. Something inside of me so I could take the first steps in this class to improve, and get through the class.
In a whole I feel the lesson helped me, even if just the slightest, to feel that I can speak in front of the group, my classmates without too much fear. For me this becomes a good first stepping stone to improving my future public speaking (I’ve held lectures and speeches in the past).
It could be very easy to attempt to avoid certain exercises because I would tell myself that I don’t need them. The lesson really helped me enhance the feeling that I will continue going in head first to these lessons to keep improving my speech capabilities.

2013-09-09
Today’s lesson was focused on breathing and trying to make sound come out of us. Focusing your breath, feeling where the sound came from and where it ended up. Which muscles do we use, and what difference does it make for how sound come out.
We received a vocal warm up exercise sheet which we should aim to do a few times a week.
In class today I almost started crying, I had to face fears about my voice that I never got help with confronting when I was younger. I used to be in various choirs, and on occasion they would tell us that we need to feel it in the stomach, I never did and no one ever helped me with it. The exercises and information we went through today definitely helped me face that fear, and was much more rewarding than any song teacher or choir I’ve ever been in. It strengthens me that I got to face this fear today, and it encourages me to keep working towards becoming a better public speaker.
I definitely still find a weakness in my own fears, but I see myself working through them each and every lesson we have.
My own ultimate goal is still to just generally become a better speaker, be able to talk so people can hear me, and hopefully listen. These lessons are definitely one step in the right direction, and it reminded me about a lot of other exercises that are generally good for body knowledge. Partly I need to work on more exercises like the warm ups, and feel “it” in my stomach, and partly I need to work to fight my own fears.

2013-09-16
Todays class had two big focuses. After having had a lecture, which covered a lot of breathing / vocal warm up as well as the rhetoric aspect of speech and to some extent drama, we continued with a few extra breathing exercises. The “elevator” breathing exercise had a huge focus on relaxing. For me most of these exercises come with a lot of tension, and fears. Most of it is irrational, I know that, and I have yet to figure out where all of it stems from, but each time I fight it I am getting a bit closer towards the answers that I need to develop further. The elevator made me relax my face (especially) so much that it caused both aches and nausea. This is due to that I’m always so tense so when I finally relax it makes me sick. In turn that makes it harder for me to actually engage in these types of exercises. I know that for the future these breathing exercises, even if I won’t use all of them, will come in handy. Similar to what I’m experiencing with all the years of different types of therapy, there’s lessons from all of it that I draw upon once in a while. The most important thing for me right now however is to get a lot more comfortable with it.
Before the breathing exercise we were shown a few exercises we can use to make it easier for us to memorize and work with our lines for the Dramatic reading. By using physical movement and activities together with reading the lines we’ll easier bind the lines of text into our head, rather than just walking back and forth, or worse sitting down in the sofa.
I do know that I will need all the help I can get with memorizing my lines, but right now I feel very confident that I will manage to remember them.

2013-09-23
Today we worked on emphasis as a means to learn a text. In this case we chose words referring to one or more people, or in some cases an important object to the story to emphasise. Using the technique we learned to dissect a text and figure out what we were actually saying. Who is this “they” referring to? The women we just talked about or the men? Were the living people referring to women as well, as was the remains after the men’s actions.
When speaking a part, or any text you need to know what you’re saying, not only learning the words.

2013-09-30
Speaking loudly and clearly, to be overheard while others next to you are also speaking. Grouped together with one other person having the to keep eye contact in order to make it easier to hear.
Articulation. Good deep breath.
We walked around in the room, all of us reading lines at the same time attempting to out speak the others, by being clear and articulate.
I learned that I’ve got a good base to build on, but I can definitely improve my articulation. I will do a worse job while I’m tired, exhausted or stressed. I’ll be out of breath before it starts under those circumstances.

2013-10-07
Rehearsal 1
This was the only rehearsal I made it to. It was a chance for us to perform the whole thing in front of someone, and be accountable for it. No messing around. This made all the difference. When it’s only the group working together a lot of giggling and silliness will occur, often more than once per run through of the play.
The weeks leading up to this I’ve been under a lot of stress, and I realized that the more stressed out I am the harder it is for me to remember my lines. Lines that had previously been fully in my head were now slowly falling away from memory. Luckily I could make the best out of having the play in my hands.

2013-10-21
The Performance
We finally reached the day of the performance. Even if I had yet to learn all the lines, due to a lot of stress, I figured out how to improve that area for the future. I ended up mostly rehearsing the lines during the sessions we had with the group, rather than reading them through over and over trying to repeat them without the paper at home, which was something I should have done to make them stick. I did do that in the beginning with Scene 10, and it stuck since then, those were the parts I knew the best. Even if it can sound obvious, it is something I learned and that I will have to keep reminding myself about.
Through the course I’ve learned that picking a piece of text apart, if you have the time, is a good tool. Figuring out what each piece is referring to, what it means and who it’s directed to. In this case you also got some space to play around with it, use the “Who Am I Speaking To” as a part of your performance.
I learned that getting outside of your comfort zone with a bit of drama can help you a lot in the future. Now I am less afraid, even if I will shake like a leaf, to take on and get up on a stage to talk in front of people or read something highly personal (like we ended up doing in the Personal Life Writing lecture later the same week as the performance).
When you pick apart a text there’s nuances you’ll find that might be missed otherwise. A piece of the text which is referring to the same object over and over, will get more meaning if you look over what it is trying to say. When it has more meaning to you it will be easier for you to express that meaning while reading it aloud. Much similar to the one line about “the point” read by S- B in my group.
Take the time to breath, I knew this since before and with the performance I got the time to re use it. If you plan your text properly you can of course use breathing and artistic pauses to help you get through your nervousness, or in my case you will just have to make due with what you got and add them in as you go and make it work.

As a whole this class has given me increased confidence in myself, and the fact that I can make myself heard if I need to thanks to some of the exercises. I know now how to prepare and plan for any presentation to make it more successful than in the past.
Thank you -.

Ages of Change

Dear friends who are 30 and over, what have you enjoyed about your current age? (30’s, 40’s, 50’s, 60’s etc.)

For me my late 20s and early 30s were revolutionary. Simply because I lost the ability to speak, think, write and a lot of memories. My mind shut down and I had some catching up to do, with rest. I had to reboot so to speak.

I lost a lot of memories, mostly about arguments which were pointless. I gained perspective about what’s important to me. And because I’m not fully well yet, I’m still looking at life quite differently. I can’t put exact words to it, I will try though.

Losing memories meant that I wasn’t holding a lot of grudges anymore, and that liberated me entirely. I got a chance to restart with people who wanted to (mostly if they came to me, because I wouldn’t really remember). I could sometimes remember the events, but not the people involved. Which was… Strange, but I got through it.

I found solace in not holding grudges though, and I still forget a lot of stuff, which means if we have a fallout I’m likely to forget. The details at least, which also can be detrimental. I get that. But for my own mental health, it works. It helps me let go and move on. I get that’s not always possible for everyone…

I’ve also learnt that we have to take on our struggles and battles differently. Just because it works for me, doesn’t mean it will work for someone else. Yes, I do preach forgiveness a lot. Because it’s right for me, and liberating. I try to preach less though, since I know it’s not right for everyone, as I already said. Processing hurt, and struggles is going to be different for everyone, which is also something I’ve come to understand.

I’m only 3 years into my 30s, and even if it’s been a struggle it’s also been a hell of a ride, which I wouldn’t trade for anything.

Have you learnt something about yourself?

Did your life change somehow?


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Featured image: Change, by Nick Youngson CC BY-SA