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Discovering new things about your body with a chronic illness is ✨A Journey✨

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Also I haven't given up on the comics!! As it turns out, making a comic series about the symptoms of chronic illness is a bit tricky when you're. You know. Dealing with the symptoms of chronic illness. I flared really bad a few months after I started, but there have been updates in my story and many things I want to write about, but i simply don't have the energy to sit down and draw right now. Maybe I'll do some super messy doodles to catch y'all up, or maybe I'll just leave it until I get the fatigue under control. Even just having this account to talk about my story and my journey with my illness has been hugely cathartic, so I'm glad I did it, even if I've had to put things on A Big Pause

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"everyone gets tired" okay well have you ever been so tired you can't eat. not like you can't make food, but like you have no energy to lift your fork to your lips so it keeps falling out of your hand. you have no strength in your jaw to chew so every bite feels like running a marathon. even your insides are tired, you can feel your throat working to choke down the food you can barely taste, and even though you haven't eaten all day because you couldn't get out of bed, you can feel your stomach struggling to wake up enough to digest and you always end up feeling sick. have you ever been so tired that the most basic facets of survival are nearly out of your reach without a herculean effort and every day you wake up wondering if you'll get to feel the sun or if it's going to stab the backs of your eyes like a burning knife. if you'll be able to walk by the time noon rolls around or if you're in for another day lying in a dark room with nothing solid in your head or your stomach, too tired to raise your head to drink, to move to pull your blanket over yourself, too tired to sleep

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coming out of a fatigue spell is crazy because sometimes my body tells me i'm okay to move by jerking my muscles out of nowhere or making me feel like all of my joints are bugs and sometimes i have the first coherent thought of the last two hours and it's some shit like 'i am steeping in my hatred like a bitter tea'

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When I flared so bad in November that I physically couldn't be out of bed for more than like. Two or three minutes at a time. I did a loooooot of doomscrolling, to the point where I felt like I was mentally back in the place I was as a teenager when I had no friends and spent every waking minute on like instagram or something. I caught myself falling into habits I haven't had in years, like compulsively arguing with people online or engaging in content that made me mad or upset. If I was in the same place I was when I was younger, I would've just kept falling into that pit, but I know what it's like now to not feel that way, and I didn't want to go back.

So, I did the most logical thing to me: I went on Amazon and ordered a bunch of yarn and crochet supplies.

I haven't crocheted since I was in the single digits. My grandma tried to teach me, but I was never able to get past the chain stitch. Even so, I remembered absolutely loving it; I'd make chains out of whole balls of yarn and just like, have them in a drawer. I'd do it over and over again because I liked the colours and the repetitive motions. It was soothing to me.

I got a beginner's crochet book and started teaching myself other stitches. I was having really bad brain fog at the time, so I learned slow (and wrong), but I still learned. I made scarves for everyone in my family for Christmas that were way too long and just the same stitch over and over again. I took my yarn and hooks to the emergency room, to get blood work, to urgent care. I made a blanket that covers a double mattress and am hoarding yarn under my bed.

I'm just learning how to make other things, like stuffed animals and granny squares, but honestly I would probably be just as happy to make more mile-long chains. It's extremely calming (so much so that I fainted in the middle of doing a scarf in the ER once) and when I'm doing simple patterns, it's something I can do even with the fatigue and the brain fog. I no longer feel the need to engage with shitty people online or spend hours scrolling and rotting. I've successfully pulled myself out of doomscroll spirals with 'oh shit I need to finish that scarf/blanket/amigumuri'

I used to see posts like this going around and always felt a little defensive because I never really had anything like that. I was always so tired and sick and thought it was a personal failing, so someone being like 'hey maybe you should do something other than scroll instagram reels until you want to die' felt like a personal attack (yes, I was in a bad place). But it's literally so important to have Something like this and I'm so glad that I'm in a place now where I actually do

Most anti phone advice is so inane and regurgitated to me but one thing I’ve been thinking about for days is “social media is okay, but the real danger comes in when you think your phone should be your go to during your limited pockets of leisure” like that’s literally the truest thing ever

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Telling someone with a Covid-induced disability that 'Covid is no worse than a cold or a flu' is disgusting behaviour and should be treated as such <3

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the thing about disability is it really does sometimes boil down to "wow i wish i could do that" and then you can't. and it sucks.

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For the last two days, my lips, sinuses, tongue and throat have slowly been swelling. Not enough to cause issues, and so slow I've barely noticed it. But it's been getting worse as time goes on and I have no idea what's causing it?????

Why do I feel like I'm having the world's slowest anaphylactic reaction

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Why do I feel like I'm having the world's slowest anaphylactic reaction

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It was only after nearly passing out in front of an airline worker that someone remembered I exist, and when that happened I GOT SCOLDED for not waiting longer. I'm just. So tired

Me: hi I need a wheelchair there is no option to book one through your app

Airline: okay just wait a few minutes :]

Me: hey it's been twenty minutes I'm going to miss my flight

Arline: just a few minutes :]

Me: okay I'm just gonna walk to security fuck this

Airline: wait no

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Me: hi I need a wheelchair there is no option to book one through your app

Airline: okay just wait a few minutes :]

Me: hey it's been twenty minutes I'm going to miss my flight

Arline: just a few minutes :]

Me: okay I'm just gonna walk to security fuck this

Airline: wait no

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Actually while I'm at it, IBS is the fucking worst part of POTS in terms of like. shit making sense

Like oh, yeah, my body doesn't make enough blood and the blood it does make doesn't circulate properly? So I experience dizziness, fatigue, brain fog, heart palpitations, and shortness of breath? That all makes sense!

........oh, and what? my small intestine sometimes just decides to throw a little dance party and I'll spend three solid hours in some of the worst pain I'll ever be in and the pain moves throughout my entire abdomen with zero rhyme or reason and also my body forcibly expels everything I've ever consumed or ever will in the most painful and inconvenient way possible?

HOW DOES THAT MAKE SENSE??

There should be an archive of 'texts people have sent during an ibs flare' because sometimes I think the only time I am funny is when I'm actively fighting for my life

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Like, you are lying if you say that poop jokes aren't always at least a little bit funny, but there's some extra spice to it when your whole body is convulsing and you feel like you're about ten seconds away from either passing out or seeing god

There should be an archive of 'texts people have sent during an ibs flare' because sometimes I think the only time I am funny is when I'm actively fighting for my life

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There should be an archive of 'texts people have sent during an ibs flare' because sometimes I think the only time I am funny is when I'm actively fighting for my life

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I woke up today, both expecting and not expecting it to be the worst day of my life.

It's my last day in the city I thought I would call home. The last day of moving out of an apartment I thought I would be able to live in for a long time on my own. The last day to see the few friends I have and experience things that I won't get a chance to in my hometown.

I got little sleep, and a horrible digestive flare in the morning that put me in an immense amount of pain. Upon walking into my now empty apartment, I burst into tears in front of the movers. I sat on the floor in my barren bedroom and cried, telling my mother how much I just wanted to give up, how I am so tired of fighting.

Then, I remembered I still had to say goodbye to one of my neighbours. We haven't interacted much, but she's been extremely lovely and helpful to me. She kept me company during the apartment yard sale. She let me use her stapler the night before a big assignment was due. She spoke to me about her health issues and gave me advice.

She surprised me with a card, and we stood outside her apartment and talked for nearly an hour. She told me about her friend with EDS who is going through a nasty divorce with a horrible man. She talked to me about her cancer treatment. I confided in her about how scared I was to be going back home to live with my extremely conservative, religious parents.

Then, I met my friend (also a neighbour) upstairs. This time, walking into the apartment didn't feel like a punch in the gut. We went to a craft store that I won't be able to visit for a while, but didn't find what we were looking for. She showed me some of her favourite songs, and we sang Honeybee together in harmony. We went to our next stop - a bubble tea shop, as there is nowhere to get bubble tea in my province - when we both realized we were hungry, and she asked if she could take me to her favourite Chinese food place.

She told the waitress I've never had soup dumplings. The waitress was just as excited as she was, telling me how much I would like them. When I asked if the tea was caffeinated (and then said I couldn't drink it, as it was) she offered me a glass of water.

My friend filmed my first time eating soup dumplings. I did pretty good. I was expecting an upset stomach, but they were delicious. We also had pork buns that smelled like my grandma's homemade bread. I dropped an entire dumpling in the bowl of vinegar and laughed until I was dizzy.

We got bubble tea with popping boba, the only kind I've found that doesn't upset my stomach. It was her first time trying the popping ones and she loved them. She dropped me off at the apartment and got out of the car to give me a hug. I reminded her that I plan to come back with giant muscles. She yelled goodbye out of the window of her car, and I yelled it back. We said I love you for the first time.

After finalizing the paperwork, I took an Uber to the Airbnb my mom and I are staying in before our flight tomorrow. The driver asked if I was working or in school, and I told him I was actually moving home due to health issues. He asked what was wrong, I told him: I have an autoimmune disease that affects my whole body. It won't kill me, but it can't be cured. He told me his story about a dangerous heart condition he had a few years ago, and how he's fully recovered and takes fantastic care of himself. He told me I reminded him of his daughter, and that he would pray for me to be healed and get everything I want in life. I almost cried again. I told him I'd pray for him too.

It's cold and raining. I'm having a hot bath and then am going to lie down for the rest of the day. We fly early tomorrow, and I already know this week is going to wreak havoc on my body, but I have the entire month of February to rest. At the end of February, I start a physical therapy routine specifically designed for people with POTS.

This move is devastating. All I wanted to do growing up was to get out as soon as possible. And after having a taste of freedom, of the city and all of the experiences open to me, going back feels like a death sentence.

But there is so much good in the world. In my world. I fully plan on coming back once I am stronger. I have a list of things I want to do once I am able to manage my symptoms (continue learning to box, try Indian food, jump in puddles, build a snowman.)

It is not fair that I am sick. I want nothing more than to stay. But I also know that if I were to stay out here, if I were to continue to try to live on my own, pushing and pushing and pushing - it would kill me.

I am sick. I am, at this point in time, incapable of most things. My independence is gone. My world has shrunk to the inside of my childhood bedroom.

But I have time to write. I have time to draw. I can share my story and try my best to help others in my situation. I can get involved in helping kids and parents and educators learn about conditions like mine, and how to catch them early. I can text my friends and get good rest and see my doctor and slowly get stronger.

My life is not over. Right now, it's on pause. But I will come back.

And I'll have gigantic muscles.

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concept: time stops for me. i catch up.