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@mychronicillnesslife
hi again
so i know i said in my last post i probably wouldn’t be posting on here anymore, but my friend might have POTS. i don’t know too much about POTS, but if any of you guys have POTS or know a lot about it, if you could please message me so that i could ask you some questions to help my friend that would be greatly appreciated!
thanks!
hello friends
hi! it’s me, mychronicillnesslife. i don’t know when i last posted, it’s been maybe a year since i logged on last? (i still have no idea how tumblr works btw). i would like to update y’all on how i’ve been.
first off, how the ACTUAL FUCK do i have 420 followers? that’s crazy. i swear i had like 50 when i logged on last. thank you guys so much. the support means the world to me.
my graves’ disease has been actually treating me amazing. i haven’t gotten labs done in a while, so i don’t know how my hormones actually are. it’s also been over a year and a half since i was diagnosed, and i don’t remember what being healthy feels like, so maybe i’m not actually so amazing.
this tumblr community of chronically ill people has done so much for me and has really made me feel welcome. however, while i was running this blog, i over-dramatized everything. none of you have any clue of what i’m actually like. i could lie whenever i wanted. i don’t really get abdominal migraines anymore (but it says it in my bio). this also let my illness become my life. to make yourself feel healthier, to make your life as amazing as it can be, you need to realize that your life MUST exist outside of your illness somehow.
i’m in high school now, and that’s probably not a big deal for most of you. but it’s a big step for me. also, i play a sport. i’m on my high school’s competitive dance team. (if you don’t think that’s a sport, fuck off.) my doctors cleared me, and so far i haven’t passed out or anything. actually, it’s been making me feel better (like exercise should). of course i’m still tired and have a hard time focusing, but it’s so much better than it was.
i don’t think about my graves’ disease every day anymore. it’s become so constant and so much less in my face that i don’t feel that bad anymore. i also used to make myself feel worse because i over-dramatized every symptom.
“two girls staring at the ceiling” is still an amazing book. haven’t reread it in a while, though
thank you guys so much for the support, it means the world to me. however, i don’t think i need this blog or your support as much anymore.
signing off, (can you tell i’m trying to sound cool?)
helen (mychronicillnesslife)
p.s. sorry this probably made no sense i’m (you guessed it) really fucking tired.
p.p.s. feel free to message me or talk to me! i might not respond right away but i’ll try!
Correct response!
This needs to be a card. I fucking hate get well cards from stores. Where are our chronic illness cards?!?!
CHRONICALLY ILL PEOPLE, LISTEN THE FUCK UP!!
Ok, I read this one book about a girl who had just been hospitalized for Crohn’s Disease. And it’s all in poetry-ish format. She talks about the pain the she goes through, and how she copes with the fact that she’s never getting better. And she has a roomate who’s had Crohn’s for around five years.
It’s called Two Girls Staring At The Ceiling, by Lucy Frank. You should really read it. Seriously.
still a really good book!!
also psa to my able bodied followers:
being tired because you stayed up late is NOT the same as a chronically ill person being exhausted because their body literally isn’t working right.
I read somewhere that an able bodied person would have to stay up for 4 days to experience the fatigue of the average person w chronic fatigue
stop by the new young chronic pain chat! everyone is welcome, we talk about pain, meds, more pain, our pets etc
go to https://discord.gg/xFRRbWj and join the fun
we are from all over and have a large range of ages, chronic conditions, and backgrounds
hey HEY if you’ve ever wanted to hang out with a bunch of super cool people that also deal with unbearable body trouble you are in luck!
YOU DON’T HAVE TO FEEL GUILTY THAT YOUR ILLNESS IS NOT AS SEVERE AS OTHER PEOPLE’S!!!
FRIEND, THIS SHIT YOU’RE DEALING WITH IS AFFECTING YOUR LIFE AND CREATING CHALLENGES THAT AFFECT YOU!!! OTHER PEOPLE’S ILLNESSES ARE AFFECTING THEM, IN WAYS THAT ARE UNIQUE TO THEM, AND THE TWO EXPERIENCES CAN’T BE COMPARED!!!
YOUR EXPERIENCE IS JUST AS FUCKING VALID AS ANYBODY ELSE’S!!! TAKE CARE OF YOU AND YOUR NEEDS - YOU HAVE THE RIGHT TO WHATEVER CARE YOU NEED!!!
doctors: don’t go off this medication suddenly!!!!
also doctors: hmm i’m going to take my damn sweet time approving your refill lol too bad if u run out?
also doctors: you need a refill? oh, come in for an appointment that’ll be way past when u’ve run out
the pharmacist who you see every month: ummm we don’t have this lol? come back in 5 days. and take this prescription with you it is tainted and you take a Bad Drug and we are Suspicious of you
also doctors: hmmm yeah i don’t think you need this anymore because it’s working so well you don’t have the symptoms anymore so go ahead and stop taking it suddenly
doctor: just take as needed pharmacist: NO you’re supposed to take it EVERY DAY also doctor: You can totally mix these medications aslo pharmacist: Your doctor is a moron
Chronic Illness means always having to think about what other people are going to think. Will they still believe me? Does this look like I’m exaggerating my illness? Am I hiding this the right way? Do I look well enough? Do I look sick enough?
“are you okay” no, next question
When people expect you to be able to do a bunch of things because you are “young” and can “bounce around easily” meanwhile you are chronically ill and generally struggle with moving..
That chronic illness feel when you’re symptoms seem to be doing okay so you do stuff because you have to be doing something then once you are done the symptoms are like “Hey, bitch” and you realize too late that you overdid it.
Strangers advice on how I can cure myself...
We don’t need advice on how to “cure” our illnesses! Just listen and be empathetic!
do something you’ve been procrastinating.
!!!
Do something for yourself today
Even if it’s something small, rememeber to appreciate yourself and give yourself some love.
my illnesses have destroyed the person I used to be. And they’ve made me into a stronger and braver and ultimately very different person. I can appreciate that.
But I will never get back the person I was.
