#actually... not the worst fatigue i've ever had. but the Worst was a side effect of a medication. so this is the worst naturally occurring

[galwaygremlin]

downsides of taking an unplanned pain-nap in the middle of the day: am now Awake

upsides (?) of doing so: can sign up for a 24 starting at 6pm tomorrow and be reasonably alert for at least part of that shift

[hellyeahsickaf]

Abled people don't fucking get it.

You don't get to imply I'm living some kind of "forever vacation". It's perpetual pain. If you see me doing something I enjoy, it's not because it's what I'd rather be doing than being "productive". I fucking miss the gym but things like video games are just a much more accessible activity these days. I'm not "lounging", I don't get a break from the pain just that sometimes I'm able to take my mind off of it

Unemployment isn't some kind of break or excuse to not participate in society (capitalism is garbage but being disabled=/=unemployed for the hell of it). For reasons, I fell behind in school, bad. But I got myself a diploma equivalent and finally felt I'd chosen the line of work I wanted. I had connections, opportunities. I had fibro and some fatigue (unknowingly CFS as that was manageable) but I was getting PT and managing it as best I could. All I needed was to take courses and I was ready for that even with the difficulty of my then undiagnosed ADHD.

And then I got sick, really sick. Worst mono infection my doctor had ever seen due to medical neglect, Shoutout to those shitty CVS minute clinics. It made my ME/CFS so much worse, I was stuck in bed all the time before getting put on Adderall for my then newly diagnosed ADHD. Then I thought the fatigue was finally healing and a side effect of Adderall was a huge crash and wave of fatigue. No it turns out when it wore off I just felt the fatigue again lmfao

I was told I'd be better within 6 months. Okay so I can opt for the Spring semester, no big deal. 8 months go by, a year, a year and a half. I waited and waited. Hoping that "when I get better" I could be caught up with everyone else I knew my age. That was over 7 years ago. Do people think I wanted that all taken from me? To get progressively worse and worse?

Do they think loss of agency is something I enjoy? Needing help, being unable to drive, to enjoy my old hobbies, cook for myself regularly? I've been accused of enjoying this and not wanting to get better as if this hasn't put my head in very dark places. Sometimes I feel like I see a way out of this and it isn't recovery. They don't get it. I don't enjoy being heavily medicated but I know I need to be. I don't enjoy having things purchased for me because I want more financial independence. I don't enjoy feeling like a leech, actually.

It's not a vacation, it's hell. You can go on about how much more exhausted you are because you work or whatever but the thing is I don't need a job to feel what you feel after working. I feel like I worked a 12 hour shift after taking a shower on some days, no exaggeration. You can't compare your able bodied exhaustion to the effects of a chronic illness that fucks you up without you needing to work a full time job. This is my full time job and it wasn't the one I was hoping for exactly

[amethystina]

A health update (and a general explanation of my long Covid)

So while I've been pretty open about living with long Covid, I realise I've never taken the time to explain what that actually means for me and my quality of living. It's a phrase I toss around but I can imagine it doesn't feel all that substantial to a lot of you.

So I figured that now that I'm feeling a bit better (more on that later) I should do so. Partly because I figure it will make it easier to understand why I sometimes have to disappear for weeks on end.

So, if you're interested, feel free to keep reading under the cut :)

But be warned: It's long and kind of whiny. But also ends on a high note! So there's that.

The first time I caught Covid was around Easter 2020, long before there were any vaccines, which meant that I was hit hard. But no matter how bad I felt during the illness itself, the aftermath has been ten times worse. I've been living with my long Covid symptoms ever since, so for four years now. They worsened for a couple of months when I caught Covid a second time in February 2021, but have otherwise held pretty steady during those four years.

A lot of people experience different symptoms with their long Covid and, sometimes, they'll change as the weeks and months go by. I actually had a very interesting couple of months during 2022 when my sense of smell just went completely whack and everything suddenly smelled differently than it should. Like, I could be smelling an apple but it did not smell like an apple. It was a weird time in my life.

Anyway. My most common symptoms are fatigue, fevers, joint pain, brain fog, memory issues, incoherent speech, and lowered blood circulation.

(The latter actually kickstarted the Raynaud's syndrome I have on my mother's side so now I struggle with fingers and feet that will occasionally go white, bloodless, and completely numb at random intervals. Fun times)

The fatigue and fevers are the worst by far. For the past four years, I have had exhaustion fevers between two to five times a week. Or every single day if I'm unlucky. It's very much tied to how much sleep I'm getting, how well I'm eating, and how many taxing things I do each day. I need eight hours of sleep to be functional and anything less than that will most likely mean I'll end up having a fever before the day is over.

Unfortunately, I've always had issues with my sleep so, on most nights, I don't get eight hours even if I try my absolute best. Sometimes it's because I wake up too early and can't fall back asleep and, sometimes — because my life sucks — it's because my fever is so high that I can't fall asleep. Cue the endless cycle of too little sleep and fevers.

Because one of the main issues with these exhaustion fevers — and what makes them so difficult to manage — is that there's no way to lower them. Medicine has no effect whatsoever. Once I have it, I just have to suffer through however many hours are left until I can sleep and hope that it'll be gone in the morning. Sometimes it is, sometimes it isn't.

And every day my energy level gets just a little bit lower and the fever a little bit higher. Some days, all I can do when I get home from work is to lie on the couch and stare at the wall because I'm too tired and in too much pain to even watch something. And, again, no amount of medicine helps.

It continues on like this for a while and, every third or fourth month or so, the strain eventually becomes too much and I fall ill. My body simply shuts down from the continued stress and exhaustion, to the point where I can barely get out of bed. And, usually, I can feel it coming. On top of the fevers, I start coughing, then get a headache, and then my nose gets stuffy. And, by that time, I know I have about two to four days before I get sick. It's so accurate that my coworkers have learned that when I give the sign, they have to tell me whatever tasks they need to be finished within the near future since I'll probably be out of commission for one to two weeks.

But I eventually recover, go back to work, and so the cycle starts again. And again. And again. And again.

For four years.

All of this has, unsurprisingly, affected my quality of life to a pretty significant degree. I can barely work, let alone spend time doing any of my hobbies. I can't really travel anymore and, if I do, I'll get sick from the exhaustion. Even the 50-minute commute to the office (which I have to do three times a week) usually results in a fever before the day is over.

This inability to travel was how I ended up missing my maternal granddad's funeral. My shitty relatives didn't tell us the date for when he would be buried until there were only two days left and even if I could have put myself on an overnight train to get there, I knew I would be in no shape to actually be at the funeral if I did. So I couldn't go.

I did go to sit with my paternal grandmother as she was dying but, as expected, I got sick and couldn't return to work for a couple of days afterwards.

I also have to skip most birthday celebrations and any events happening on weekdays since I'm usually too feverish or won't manage the required trip to get there. My life has shrunk so much I barely recognise it anymore. I don't recognise myself. I used to be one of those people who could do a million things at the same time and somehow complete all of them. I was firm, organised, and efficient.

And now I'm not.

(... or, well, technically I am — at least compared to many others — but not compared to how I used to be xD)

Point being, a lot of things have changed and I don't like it. But, with that said, I'm also well aware that I'm lucky to be alive and I'm fortunate enough to have a stable job and a roof over my head. So, all things considered, I'm still doing pretty well.

But I also can't lie and say that this hasn't affected me in a deep and fundamental way. My life has changed and, right now, I don't know if it'll ever return to what I used to consider normal. And dealing with that knowledge — and the grief and fear that comes with it — hasn't been easy. I have cried ugly, self-pitying tears over this many, many times. It's frustrating to have no control over what my body does and to constantly have to be careful of what I do so I don't exhaust myself. I am furious that this happened to me.

But, after four years, there's also a certain amount of acceptance. And while I'm annoyed by my new limitations, I try my best not to feel too sorry for myself. Instead, I try to adapt as best I can, even if I might not always do it gracefully.

That does mean that I sometimes push myself more than I should, though. Because, if I didn't, I wouldn't never produce anything. As depressing as it is to admit, everything I've given you in the past four years has been while I was sick. I don't think a single chapter I've written or drawing I've made has been untouched by this. I've become an expert at writing, editing, and drawing even with a fever.

That doesn't mean I regret it, though — quite the opposite. I think that if I hadn't had a reason to write and draw, I would have felt even worse. A lof of the time, the excitement I feel when I'm able to post a chapter or show off a drawing I've made has been the highlight of my week. It's an accomplishment.

But, that said, it's still hard. Writing in particular. It requires a level of brainpower I can't reach when the fevers are too bad. And so, sometimes, I just can't. I literally just can't.

And, back in January, as I was trying to edit chapter 39 of Who Holds the Devil, I honestly pushed myself too hard. I was so determined to finish it that I didn't let myself see just how bad I was feeling — not at all helped by how emotionally draining the content of the chapter was.

It was only once I finished the chapter and posted it that I realised how absolutely wretched I felt. Not because of the chapter itself, but my lack of compassion for myself, I guess? Because the fevers were bad, I was barely sleeping, and I was both mentally and physically exhausted. And, what was worse, I realised that I was displaying depression symptoms I hadn't seen in over ten years.

All of a sudden, I got annoyed as soon as a minor inconvenience appeared. Everything people said to me was dissected into its tiniest component. I feared that people were secretly hating me. I couldn't meet people's eyes anymore when I was talking to them. I didn't realise I was just sitting there, staring at a wall, until several minutes had already passed.

And, as the final nail in the coffin, I stopped talking about how I was feeling.

And that, right there, is my last warning that I need to do something — always has been, ever since I was a teenager. When I clam up completely, refusing to admit to the people around me that I'm feeling bad, that's when I'm about to spiral.

So, the very next day, I went to my boss and told her that I'm getting burnt out and I need to do something NOW or this was going to turn ugly real soon. Thankfully, my boss is amazing and, after a doctor's visit, I was put on partial sick leave. Right now, I'm working six hours a day instead of eight and, let me tell you, I'm thriving.

Or, well, as much as I can while still having long Covid.

I'm almost angry at how much better I feel because, if I had known, I would have done this a lot sooner. I actually have energy now! I've only had a fever about four times in a little over a month! That's insane! It used to be four a week!

So yeah. I'm feeling better than I have in a long time. The downside is that the partial sick leave is still only temporary and there are no guarantees that I'll be able to keep it. Though, if need be, I'll just have to ask my boss to rewrite my contract and change the amount of hours I work because, man, I don't ever want to go back considering how much better and happier I feel. I'm not exaggerating when I say that I feel like I've gotten my life back. It's not quite the same as before, but close enough to it that I kind of want to cry again — but happy tears this time.

And so I've spent the past couple of weeks just... living? When, before that, it felt like I was merely existing. I've been drawing a lot since that helps with the depression symptoms (which are almost completely gone, thank god) but writing has been harder. Possibly because I forced myself to do it during a time when I felt really, really bad and now I'm instinctively trying to shy away from it. But, since I know that's just my mind playing tricks on me, I'm going to give it another try this weekend. I want to write and I miss the stories I'm working on. And, hopefully, since I'm feeling a bit better, I can maybe get back to a more structured uploading schedule. But we'll see. As always, I can't make any promises.

But that's about it, I guess? I'm feeling better and, since I am, I've been doing a lot of things that I wasn't able to before (like taking walks — I take a lot of walks). And I'm still trying to figure out my new routine now that I work less. And while I still get sick sometimes (I am right now, in fact, due to lack of sleep on Tuesday night) I always find my way back eventually.

So yeah. If you've read this far, thank you so much for your patience 💜 I admit that I don't really enjoy writing things like these since it feels like I'm whining — I was very much raised not to take up space or complain when things are difficult (an unfortunate side effect to being the middle child with two disabled, high-maintenance siblings) — but I also prefer honesty and transparency. And I feel a little guilty since there are times when I've given pretty harsh responses when people question why I'm sick all the time or why I don't upload chapters as often as I used to, but without actually explaining why. So I guess it's time to be honest?

And the truth is that I've been constantly sick for the past four years. Not only due to my long Covid, but also the emotional and psychological toll of all the loss, grief, and pain I've been through. These past four years have been rough.

But I'm not saying that to gain pity or make excuses. I actually think I've done pretty well considering just how hindered I've been. I've improved my drawings so much and have written... god knows how many words. I'm honestly kind of scared to check xD But it has to be over 600k by now, maybe closer to 700k.

I think my only regret is that I haven't been able to engage with you all to the extent I would want. I wish I could be a more active and enthusiastic participant in fandom — to seek you out, hold conversations, and give you all even a fraction of the attention you've given me. I feel like I don't offer you nearly enough.

But I also know that I have to accept my own limitations. So, for now, we'll have to settle for whatever I can give, even if it's less than I would want. But I will keep on creating, trust me on that, because I'm stubborn as fuck and even if my pace is slower, I'm still determined to finish what I start.

And that's the note I want to end this on. I have suffered, yes — more so than I may have expressed to you all — but I've still managed to create some beautiful things. And while I mourn who I used to be and the fact that some of you have never known me at my best, I don't think the me I am right now is all that terrible. Do I want things to change? Yes, definitely. But do I want to change the choices I've made and the things I've accomplished in the past four years? No, I can't say that I do. I'm proud of what I've done, especially considering my limitations.

And, if you're reading this, thank you so, so much for your kindness, compassion, and support. Some of you are old friends while others of you are new, but I am grateful to every single one of you. You have made these past four years more bearable. You have made it easier to keep fighting. You have made it worth it.

Thank you 💜

[adelle-ein]

rambling about the ocd

so yeah yesterday not only did my ocd therapist tell me i have the highest ocd score she's ever seen (and like, she is not a new or inexperienced practitioner by any means) she told me that apparently a lot of my thought and behavior patterns are obsessive-compulsive. and a lot of them tie back to really extreme morality ocd, which actually explains a lot about the ways i've acted my entire life that were just brushed off as weird/quirky/generically anxious. even my other ocd "types" (contamination, etc) are all manifestations of severe morality ocd (i fear various forms of contamination because it makes me immoral, essentially) (that's fun).

i really didn't think it was that bad. i didn't think it was especially bad at all, truth be told, just one of the many diagnoses that make up my weirdness. but actually it's probably been the root cause for everything all along, including stuff i dismissed as just my own weirdness, like the extreme sensory processing stuff that's developed lately (fwiw i bought some new water bottles and significantly improved my hydration so working towards recovery on that). but since i don't have any compulsions that cause myself visible physical harm i didn't think it could be Real ocd. like i don't handwash to a dangerous level or self harm or starve myself, so i thought it was okay (nvm that i have caused myself extreme and permanent-feeling mental damage lol)

i've been perpetually exhausted, 24/7, since i was fourteen. because my brain's been at constant war with itself and still is and inhibits everything i do. because every single action i take is like moving through a molasses of obsessive thoughts and finishing compulsive rituals. my self esteem is somewhere in the marianas trench bc i feel like i'm constantly violating moral norms 24/7. the drugs that allow me even basic function worsen the fatigue and the brain fog and the weakness, but i need them or i literally can't stop doing compulsions. like if they stop making it or something i would need 24/7 care from my parents again bc i wouldn't be able to feed myself or shower or sleep.

i had been wondering a lot the last couple of years if i was autistic, especially with the sensory stuff, but it's now dawning on me that i just have the absolute worst fucking ocd that manifests itself in literally every aspect of my behavior and thought patterns. it looks very autistic on a surface level and gets me a high raads-r score, but probably isn't. like i could still be autistic, sure, but it's most likely that i just have incredibly severe ocd with every "less common" side effect known to man - sensory issues, routine and planning, social anxiety, stimming, etc etc. i did know that ocd/autism/adhd symptom overlap is huge but not that it was this huge.

none of this really changes anything, like i still need treatment, she's still gonna see me, but like, fucking hell. even i had been downplaying how sick i was, and probably still am, like even now i'm like well it can't be THAT bad i'm not dead :) but it is that bad. it's insanely bad. it's far worse than the "well everyone's kinda anxious and depressed right?" standard i keep tricking myself into believing i am. even now i'm STILL fucking questioning it bc i see people with ocd who seem so much worse than me but really i think that's more about what people are willing to put on the internet....i do not share my worst obsessions and compulsions generally and even when speaking privately to people i still downplay things heavily, i just can't do it. i'm extremely good at masking and hiding and downplaying because i've been doing it my whole life and a lot of my compulsive behaviors look pretty normal from the outside...but they're still very bad and the obsession levels are out of control high. and i've been doing so badly lately that i've had to step back from social media a lot because literally everything is a severe trigger at this point, from fandom drama to serious political stuff, because i get caught in a severe mental morality feedback loop every time i see something that can trigger it which is now a lot of things. but the stepping back also triggers a morality loop wheeeeeee (i see a ukraine flag emoji and have to sit there processing extremely distressing Moral Thoughts about ukraine and the war, for like...a while. to give you an idea of how severe it's gotten and why i've absolutely had to go quiet and careful with how i interact with pretty much everything, esp online where extreme positions are really common. i'm also really prone to picking up other people's anxieties and compulsions rn so again have to be SUPER careful what i look at - a tumblr poll about cleaning habits or similar can trigger compulsive behavior...)

it would be super cool if the ssa had cared about any of this but that ship's long sailed and they don't believe in or speak with therapists anyway (at least not in my state, they refused to even contact my therapist for the review they kicked me out over. even MD mental health practitioners aren't really exempt, they treated my psychiatrist incredibly rudely...)

but yeah no wonder i'm so dysfunctional and struggling so badly if i'm this abnormally ill ig