My heart sinks whenever anyone says “get well soon!” to me.
Because I won’t and it sucks.
I’ll have good days and bad days but I won’t get fully better.
Secret: I sometimes wish I had a terminal illness rather than a chronic illness because then I know there’d be an end in sight.
For a while, I was in therapy, and my therapist told me I was the most hopeless case he had ever seen, just because of this. He said that there’s a peace with people who know their suffering will be over someday. With a chronic illness, though, there’s never that.
Which is super depressing. Sorry, y'all.
Sometimes you have to just treat yourself like an overtired toddler.
“Okay, as soon as you finish this assignment you can take a little nap.”
“You just cleaned your room, good job!”
“Hmm..maybe eating a snack will stop you from wanting to cry.”
Sometimes? I think you mean all of the time.
Being an adult is just parenting yourself.
It’s true and highly effective self care. Speak to and treat yourself with the same love and care you would want your child self to be given.
That means: no insults or name calling. No judgement. Patience. Gentle firmness. Health, safety and happiness first. Encouragement. Rewards and validation for a job well done. Self soothing. And above all else, love.
This is so important
hey friends!! this is an extension of my last post, which you can find here, where I talked about navigating high school when you have a chronic illness. Since then, I’ve gotten a lot of asks wondering if their health concerns counted as a chronic illness and what accommodations they were entitled to. Instead of answering everyone individually, I made this post so I could hopefully reach more people who need answers.
Disclaimer: I am not a medical doctor and am not aware of every possible limitation + accommodation. These are just the ones I’m aware of, and are a good place to start.
you will most likely need medical documentation to support your request for any of the following!! especially at public schools!!
in the classroom:
for tests/exams:
technology-based:
in the halls/around the campus:
outside of school (homework):
examples (!!!!! as in not inclusive of everything) of conditions that could warrant accommodation
reminder: asking for accommodation, or having one of the above mentioned health conditions does not make you weak. it does not make you lesser. you are strong and brave and capable and deserving of success. you deserve an education. believe in yourself, ask for help when you need it. i’m always here to talk.
love, soph
Okay but really.
I always feel so bad when the doctor asks me about exercise, but heat’s a hugeee trigger for me. The only thing I can really do comfortably is yoga, and you can forget anything where my head’s lower than the rest of me because I will throw up. Or at least see painfully pretty colors until I pass out.
My heart sinks whenever anyone says “get well soon!” to me.
Because I won’t and it sucks.
I’ll have good days and bad days but I won’t get fully better.
Secret: I sometimes wish I had a terminal illness rather than a chronic illness because then I know there’d be an end in sight.
For a while, I was in therapy, and my therapist told me I was the most hopeless case he had ever seen, just because of this. He said that there’s a peace with people who know their suffering will be over someday. With a chronic illness, though, there’s never that.
Which is super depressing. Sorry, y'all.
“Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they’ve had a worse experience, they’ll universally say they haven’t. … Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anaesthetic once or twice a day, for six, eight or ten weeks at a time, and then have a break”
—
Peter Goadsby,neurologist
sufferers ,we are warriors \m/, the claim is suggestive but it’s really painful :D
No break at all…
jointswhatjoints
headache update!!
the neurologist agreed with my theory that these are cluster headaches, and !!! he knew what eds was, and that it could affect how I reacted to meds and that it could make me more susceptible to low blood pressure.
I’ll be trying melatonin as a preventative and oxygen for the attacks, both of which are p natural and harmless.
I think I’ve learnt from this that it’s important to go to specialists, and I should probably have advocated for that clearly from the start. I could have spared myself a lot of pain :// but yes, this is still really good news
