Category Archives: health update

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.

Google voice typing

I’m going to try to write a blog post with voice. Basically I missed a step on the stairs today which meant that I pulled my arm and it’s now really really hurting and it’s my writing arm which means that I can’t write cuz it hurts.

I know that Google has the feature to write for me when I’m talking, so I’m trying that out today. I’ve been considering dictating blog posts in the past but it has just never come around to try it out so I guess today is a prime time to do so.

Even writing the full stops and the new lines is really helping me think about how I’m writing these sentences. I am however not comfortable knowing when to use a comma. I mean I know how to use a comma when I’m writing but remembering to say it the right way at the right time it’s not really the same thing as taking a deep breath to add that in your text. It is quite different.

I tried to ice my arm but it feels like it made it worse or it got worse because I iced my arm while reading so I was still holding the book which put a bit more strain on it. It’s very typical of me to try and rest but do things I shouldn’t do when I need to rest, oh well.

I think this turned out pretty well maybe I can do it again in the future sometime maybe sitting outside and watching The Birds getting some sun on my face while writing an interesting blog post. who knows, you will if you stay tuned. thank you for reading and see you next time, wait read next time.


Photo by Marie Axelsson (me), cc-by-sa.


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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.

First week of work

I’ve been working with my new job for a week. This is the first day that I’m taking a real day off. I tried om Saturday, but I had fires to extinguish. 

I slept 14hrs, and woke up around 13.00. Sleeping this much reminded me that I’ve been neglecting my naps and rest time. I’ll elaborate on this, just have to go through a few other things first. 

Yesterday my live-in boyfriend pointed out that I have been working a lot more than I’ve clocked. Which made me realize that I need to compartmentalize my work more. 

So these things connect, obviously. I need to delineate what my work entails, so I focus on that during my work time. While doing so I also need to delineate my work time as well not just clock in when I’m already doing work my accident. 

This will free me up from stress, because this is my work box [work], this box entails (these chores). Then outside that box I chill and focus on my studying for that designated time. And take my god damn naps! 

My studies,  I’ve already compartmentalized, which has helped me a lot in staying healthy. Basically I’m just borrowing from what I learnt when I started school again in January, after a year sick-leave. 

Maybe I’ll do more updates like this! 

For reference, I have Chronic Fatigue Syndrome, which makes getting a job scary and exciting at the same time. 

Out of the Closet: I’m Fat

I have not just temporarily gained some weight, which I’m going to lose soon again. I mean, yes that may happen, but it is not sustainable from a mental health point of view to continue waiting for myself to have enough energy to “deal with my weight”.

here’s a short snippet from my twitter which kinda sums it up:

there it is, I’m fat. I admit it. I come out, if you so will. And I accept it.

the only way for me to be healthy mentally and physically is to accept myself just the way I am right now.

I got my health back

Yes, and no. It is partially true, and I notice improvements every day. I also notice where my limits are and take a step back, take a mental note and try to remember for next time to not make the same mistake again. But back to the good stuff, I got my health back!

On Monday I started school again, we had the same 2 introduction classes as last year (when I tried to start but ended up with sick-leave after 3 weeks). This detail is quite important, I attended more or less exactly the same thing twice but a year apart. There it was, black-on-white, I could compare what happened, how I felt, and what the rest of the week looked like.

Last year I came out of the two introductions completely exhausted, ready to pass out. The lunch break in between I had asked to sit quite separately from everything and everyone else with my friend, to get some quiet. I recall eating a lot of chocolate to get me through.

This year I came out of the two introductions surprised that I could come out of 4hrs worth of lectures and not be completely foggy. That I could come out of the first one and still be able to think. Over lunch I did avoid the loud cafeteria, but ate my food a little earlier and then took a 40min walk during lunch. I took time to practice the calm, because I had wound myself up a bit just before the lunch break. And I came home, still functional. And I cooked dinner.

The difference is so clear, that it scares me. I don’t think I’ve been feeling this okay at all since I started studying. Maybe at the beginning of the 2nd year, but I was still at a deficit. However, that summer I had gotten a good 4 weeks of rest and reset. But I wasn’t on the meds that I am now, so I was suffering from other issues.

I could’ve come out of this and talked about it earlier in the week, but just going through the rest of the week, getting to study my assigned days, getting through 2 assignments! Not even sitting with it last minute. As well as taking my break day on Wednesday. It just feels like all the pieces are falling into place.

Now, don’t get me wrong I can still get super exhausted if I don’t watch myself, currently I can allow myself to practice and find a way to live functionally. And I am still on part-time sick-leave (at least from the doctors side).
This whole experience also brings me back to 2009, when I was coming out of my long term sick-leave (3 years) and I met someone who had been in a similar situation, burning out. They showed me that I could come out of it, but that in order to do so I would have to find a regime that worked for me. That detail I wasn’t really ready for then, but I am now, and I’m doing it. So I’m incredibly grateful for having met them.