Chronically Ill - Blog Posts

So I'm currently working on cleaning a space out in my living room for a vintage sewing machine and it has taken two days to do so. The space wasn't all that messy, but I could only work for only about an hour before I got hit with nauseating dizziness that knocked me down for the rest of the day.

I ended up learning that even if I think I can stay within my limits, I'm wrong.

3 years ago today is when this shit show of health problems started.

I was at an event making hot coco for some kids and my hands stopped working. There was pain up to my elbows and I couldn't move my fingers. Local doctors had no idea what happened and they couldn't diagnose me correctly. I called the closest specialty clinic that is 2 1/2 hours away and had to wait until the end of the next month to even be seen.

The neurologist who saw me said "essential tremors" and sent me on my way to rheumatology who gave me no answers to my other problems. It was about seven months later when I found myself back in that hospital's ER due to having a worsting of my visual blackouts and pain. I was in that specialty ER for about six hours and only got an IV and was told to eat more salt and drink more water. My mom and I decided that that wasn't worth the hours spent there and headed to another specialty hospital's ER.

We were there for about seven more hours and that's where we were told about POTS (Postural Orthostatic Tachycardia Syndrome) and were recommended to their movement disorder specialist.

When we saw him, everything changed. I was diagnosed right off the bat with POTS, EDS, Functional Weakness, and vestibular migraines. He recommended me to other doctors at that hospital and we fell in love with the care they took with everything. They got to know me before even looking at the chart and wanted to make sure that everything is just right.

I am still going back to that hospital for other reasons, but I am getting the help I need. The doctors talk to each other and that helps to move things along smoother. Just a month ago, I was invited to a Comfort Ability workshop with other teens my age to learn about how to manage our pain easier. We were separated from our parents, as they were having to talk together about how they can help us, and we were allowed to sit or lay down and had blankets and yoga mats to lay or sit on and the room was really welcoming as we talked about our experiences with our pain. We were given a 'goody bag' of sorts with reusable heat/cold packs, essential oils, and stress toys. And everything was provided by the hospital and was free to us.

All I can say is that my experience with chronic illness has definitely had it's ups and downs. I am both grateful and sad that December 7, 2019 happened - but it got me where I am today with these diagnosis and I have learned more about what I can do for myself and how to adapt to new situations.

With hope,

~ E

It's so weird that my school is actually really trying to help with my education.

Context - I have been out of school for the past month and a half due to chronic health flares, and that led to me falling behind. And now if I did feel good enough to get to school, I would be chapters behind my classmates. I have in my 504 that I can miss as many days as needed without consequences.

Anyways, I got a call from my principal a couple days ago and my mind automatically went to thinking the worst. Instead he had asked if there was anything that the school could do or provide to let me be able to catch up faster.

I read about all these horror stories about the schools system being absolutely terrible to people with disabilities and was caught off guard with the support my school is giving to me.

Or the relief of pain you didn't realize you had because you're so used to it.

That chronic pain feeling when you finally lay on your back.

It sucks that my body cracks like a glow stick and I don't glow neon green

Life is UNFAIR

Hi, I'm E. I am disabled and enjoy the arts. I like to sing, act, model, and let my imagination get the best of me sometimes. My medical problems include POTS, EDS, borderline hip dysplasia, vestibular migraines, and many more. I hope to share my journey to all who will listen. I don't want this to be a boring medical things, so I will probably add other things. I love the MCU, PotO, and American Horror Story. I also have a dog and three fish who are all quite dumb. Thanks for reading my first post!

So like I got sleep apnea right

Went in and got my cpap (it's a bipap but who cares) study and I only slept for four hours

But I feel so fucking rested??? Unfortunately I have to wait a bit for my machine to be ready but I feel so good this is great

chronic illness life is going to see a new primary care doc and getting five referrals by the end of the appointment

Dealing with the combined forces of ADHD, chronic pain, and Seasonal Affective Disorder right now and this is extremely relatable (except instead of tears I just sort of become dissociated)

splish splash

I need to say something and I need y'all to be calm

if it isn't actively bad or harmful, no representation should be called "too simple" or "too surface level"

I have a whole argument for this about the barbie movie but today I wanna talk about a show called "the babysitters club" on Netflix

(obligatory disclaimer that I watched only two episodes of this show so if it's super problematic I'm sorry) (yes. I know it's based on a book, this is about the show)

this is a silly 8+ show that my 9 year old sister is watching and it manages to tackle so many complex topics in such an easy way. basic premise is these 13 year old girls have a babysitting agency.

in one episode, a girl babysits this transfem kid. the approach is super simple, with the kid saying stuff like "oh no, those are my old boy clothes, these are my girl clothes". they have to go to the doctor and everyone is calling the kid by her dead name and using he/him and this 13 year old snaps at like a group of doctors and they all listen to her. it's pure fantasy and any person versed in trans theory would point out a bunch of mistakes.

but after watching this episode, my little sister started switching to my name instead of my dead name and intercalating he/him pronouns when talking about me.

one of the 13 years old is a diabetic and sometimes her whole personality is taken over by that. but she has this episode where she pushes herself to her limit and passes out and talks about being in a coma for a while because of not recognizing the limits of her disability.

and this allowed my 9 year old sister to understand me better when I say "I really want to play with you but right now my body physically can't do that" (I'm disabled). she has even asked me why I'm pushing myself, why I'm not using my crutches when I complain about pain.

my mom is 50 years old and watching this show with my sister. she said the episode about the diabetic girl helped her understand me and my disability better. she grew up disabled as well, but she was taught to shut up and power through.

yes, silly simple representation can annoy you if you've read thousands of pages about queer liberation or disability radical thought, but sometimes things are not for you.

i used to love jokes about canes/crutches users referring to them as their additional legs. but THIS IS NO JOKE ANYMORE.

i almost feel every step of my cane. my wrist? i feel it's more of like my knee. what do you mean i have two legs? no, i have three. yes, third one starts at my shoulder, why?

oh, i need two free hands for something... *sarcastic thought* yeah let me just pull out my second arm. *realizing i actually do have a second arm* oh well...

sometimes i just don't realize i'm holding a cane. i don't realize i can stop holding it. my fingers are glued to the handle, thanks for asking.

today, i was sitting down and thought that i needed to re-tie my shoe laces. i made knots tighter on first shoe. second shoe. then i got puzzled because where's the third shoe.

yes it IS my third leg now. she's adopted.

its really hard to get the hang of at first, trust me. ive had mine for about ~5 months and sometimes i avoid taking them with me bc it feels awkward and i hate not having full use of my hands :/

i did watch some tiktoks from people who use forearm crutches and it helped a little with how i hold them and distribute weight? all i can really say is that it takes time and practice

bought forearm crutches. i have no idea how people use them it's so difficult??? they should provide more support than a cane but i can't take a step without overthinking my every move-

“What walks with four legs at dawn, two in the afternoon, and three in the evening?”

Not me!

If you meet someone with chronic pain and you think, "wow, they're so chill, I didn't even realize they were in pain"--please know that within me lives the rage of every war god.

I needed this today

sending love out tonight to everyone who is progressively losing their abilities, whether that's movement, ability to walk, eyesight, or hearing.

it's hard to come to terms with the fact that you can't do things that you used to be able to do. I'll be honest, it feels like you're losing control of your life. it can feel very isolating and hopeless. its scary and overwhelming, and it's so hard to deal with.

you are not less than just because you can do less. im proud of you for still being here, and i wish you ease with adjusting to new ways of life. please take care of yourself, i love you.

It's actually so comforting to have classmates with mental illnesses or issues. Like, yeah, I'm not alone in this shit!

The guilt after getting ill is consuming me away. I wish, I was able to change or heal.

I may not understand psychosomatic disorders, but damn, people definitely should stop stigmatizing them. Like, why the fuck it's called pseudo just because it has mental origin? You wouldn't call someone depression pseudo, so why the fuck you're calling functional symptoms pseudo?

Guys with FND/Conversion disorder/Idk, whatever you call it, you're completely valid. I genuinely don't care about your disease being psychogenic, you're still a legend with completely real symptoms, just not psychical origin.

PNES are PNES. It's a psychological, conversion, functional, dissociative seizure. Of course it's non-epileptic. But. Often missing the word of the seizure being functional can harm those who have non-epileptic, but NOT psychological seizures.

Non-epileptic ≠ Functional.

Get over it.

"Epilepsy this!" "PNES that!"

Yeah, yeah... I got it, now, when will we bring awareness about paroxysmal dyskensias? I bet, there's at least one person who's reading this post and instead of FND has some kind of dyskensia. Do not let doctors down your disorder. The thing that might be seen as psychogenic, can actually be a genetic.

Bring awareness about paroxysmal dyskensias. Do not let them put us down.

Non-epileptic seizure doesn't mean that the seizure is due to FND or PNES! There are much more conditions than epilepsy and PNES. Stop seeing only white and black, when there exists a gray side.

When you suddenly realize that you need to do your lessons, but your whole body is hurting and also twitchy and a small activity could turn you into a shaking mess:

Sometimes it amuses me how if epileptic will have 6 seizures in one day, they will be hospitalised immediately and given treatment, while with dyskensias they just... Give the "Well, damn, but you're conscious during seizures." Yeah, I am, but why the fuck I had 6 in a row?? Sometimes, I think that tearing my ligament wouldn't be as hard as getting treatment, lol.

When your illness is so rare, that you've 62% chance of being misdiagnosed and everyone who you find on YouTube is a random old guy and just a 18(?) years old guy:

People are talking about how they understand you, how you are still you, even if you got sick. But when I get a combination of movement disorders, y'all are DAMNED.

Calling every chronic illness a "disability", is low-key stupid, don't y'all think like that? It is almost as if y'all tried to put a label on everything you don't understand. Sometimes, illnesses can, just... Not fit in your expectations. And y'all should accept it. Repeat after me, "Not every chronic illness is a disability!".

Not all seizures are epileptic, and not all non-epileptic seizures are PNES. Hope this helps!

Years will pass and I will never understand, why, just why, there's only 2 sides when it comes to my illness? Some of you immediately start to pity and pamper me, treat me as if I barely understand something, while the other consists of people who are almost the same as the 1st type, but these are trying to do it differently, trying to look caring and understandable, but in the end they are almost the same. And also, since when the phrase "I'm not letting my illness stop me." Became something ablestic? No, I don't want to treat myself as a snowflake. I don't want to do something less, because YOU think that I'll have a flare up. Flare ups are only MY and MINE DEAL, NOT YOURS. I don't want to sit and whine about how fragile my body is. This only makes me look WEAK. Since when I need to work less, just because I'm ill? Maybe I WANT to work?? Maybe I CAN work?? Maybe, it is YOU the one who sees only code in my med card?!

And still, I'm curious how an appointment which I used to go to every week a few months ago, turned into something I'm afraid of. Making me have flashbacks over and over when I just hear the word "neurologist. Made me have a whole panic attack just because I need to go to a doctor. No, please, I don't want to be treated anymore... Can't you just avoid me? Don't remember about my disease? Make me live a normal life?

To be honest, after years of searching, trying to find my diagnosis, I just... Stopped caring about this. I even started to like this thing, I know, it harms me, but do I want to treat it? No. It's a part of me, that I like.