Tag Archives: chronic fatigue syndrome

When the world around you gives up and forgets you

While a lot of the work I do do is public and visual, all the work I can’t do, is for quite obvious reasons, invisible.

That I can stream may be indicative of the fact that I should be able to work. And maybe it is but I just can’t see it myself, maybe I haven’t gotten far enough to make something worth while out of it. This isn’t a text about giving up, but rather about feeling invisible, and it’s going to get personal and it’s going to suck. But here goes.

I most likely have Chronic Fatigue Syndrome or something similar or close to it, while I thought I was already diagnosed with it, it turned out I wasn’t diagnosed with the Chronic one, even though I can trace it back to being 17 years old, if not earlier. So there’s things I need to do to get the help I need to be able to live, things that I can’t get myself to do because I do not have enough energy. Energy in this capacity is often referred to as spoon, as per Spoon Theory, which tends to help people who struggle with mental health or chronic pain issues, explain why they do not have energy, or why they can’t take care of themselves.

I am a very sociable person, I’m just bad at reaching out to people who are important to me, and family in particular. I reach out to my family when I’m in trouble, and I wait until I’m in a deep hole I can’t get out of on my own. I reach out to friends who I have showed that I can pay back when I can’t afford to pay off some shit, especially since I thought I had a job, turned into me not having a job, and not having an income and now I can’t pay them back. No, this isn’t a begging for support, post. I’m beyond that. I won’t do it, it’s not my style. So I’m here providing content, if you may, so there will be a reason to support me, and the stuff I do.

Other visible things I am able to do, which you probably see that I do is the streaming, which I already touched upon. Streaming is something I can do from home, without having a shower (on my worst days), and push over that threshold of anxiety that would leave me paralyzed and not able to leave the house. Again this loops back to “But if you can stream, why can’t you get a normal job?”, who would want to keep me hired if every few days I collapse in tears, or can’t get to work because I’m exhausted or crying? What work could I do that doesn’t drain me entirely? There was one thing, and it’s something I may be able to do again, and that is working with community and taking care of community.

Sharing this post, may actually turn into being detrimental to getting a possible job in the future, so be it, because I need to talk about these feelings.

Yesterday, which I guess is the trigger for this, I saw that people close to me, close to my heart was finally close by geographically, my sisters. And they were just across the bridge, and if they would’ve wanted to, they could’ve seen me, or let me know that they were “in town”, I would have dipped into those savings and headed over, because being allowed to see them if just for a few hours, instead of spending more than 16hrs of travel to try and go to where they live (I say more, because 16 is if you go by car, with no stops). But I did not get the chance to go see them yesterday, or if it was the day before, who knows when Instagram shows you these things. I did not even get a “hey we’re going to be in Copenhagen, but we can’t make time to see you for x y z reason”, I could have lived with that. But I’m afraid that they didn’t reach out to me, because they know I don’t have enough money for rent, and probably didn’t want me to ask for money to be able to see them.

I am considering throwing myself out on the job market, even though it scares the crap out of me, and then work myself until I’m totally exhausted and broken and end up on full-time sick-leave again, because that would be a way to pay the rent. Unfortunately, because I’m in between, and not sick enough, but also not well enough I can’t get help. Because I followed my heart and my passion last year, I lost any chance to get supported via the Swedish welfare system, because that system isn’t adaptable to people like me, people who may get spurts of energy, but then be nonfunctional for the other 75% of the year.

Maybe this is why my rate is pretty high, because I need to be able to afford not being able to work. I need to be able to pay the proper taxes and insurances to handle getting sick. Does that mean that what I can give when I can give isn’t worth it? I wouldn’t think so.

Who wants to support someone who’s just sad and depressed, that’s what we ask ourselves a lot of the time isn’t it? Even when we are being supported, we view ourselves worthless, because in a capitalist world, you’re only worth as much as you can produce, and maybe even then you’re not good enough.

What I’m trying to say I guess, is that I do not know how we’ll be able to support ourselves this fall, but we have made due this year, barely scraping by, with some extra pushes around Xmas, and for my birthday. If we can’t get money from studying this fall, we may be fucked. But we’ll deal with that when we come to it.

Making due, and barely making due. We’re okay, I mean we have a roof over our heads, but as soon as we can’t pay rent anymore, then what? I don’t know. Anyways, summer still has a lot to bring, and I can maybe write more again, finish the revamp of my patreon, continue streaming, and figure out if I have enough energy to squeeze anything else into this. Thank you for reading, and… I think you know where the tip jars are, if you feel so inclined.

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.