having an undiagnosed illness is like the check engine light being on all the time in your car, but when you take it to the mechanic, they announce happily that all the tests came back fine! and you just stare at the check engine light with dread.

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@kyhibit
having an undiagnosed illness is like the check engine light being on all the time in your car, but when you take it to the mechanic, they announce happily that all the tests came back fine! and you just stare at the check engine light with dread.
Try doing the one that’s physically easiest to do right now. Helps me, anyways.
Do you feel like doing something with your hands but don’t wanna use your brain? Try a repetitive thing like knitting, practicing drawing shapes, practicing your handwriting if you’re learning a language with a different alphabet, etc.
Feel like just being entertained and killing boredom? Pick up the book or movie nearest to you and dig in. Maybe make a drink and snack to enjoy.
Feel like thinking hard? Write something or look through the textbook or website you’re using to learn your new skill. Maybe draw something more complex. Make a plan for a new project or come up with a realistic study schedule for yourself.
Wanna lie down but still do stuff with your brain? There’s apps on your phone for that! You can plan out a cross stitch pattern, go on duolingo, read something on the kindle app, put a filter on a photo, do a doodle with your finger on a drawing app.
This way of thinking of things doesn’t always solve the issue but it helps me sometimes when I’m feeling indecisive.
Things you shouldn't feel bad about
needing accommodations
taking breaks
relying on other people
needing help
struggling with something more than others
your food
crying
panicking
going to therapy
taking medication
your sexuality/gender
taking up space
not going to every social event
The amount of friends you have (quality over quantity)
stimming
getting excited
liking "basic" things
liking "cringey" things (cringe culture is dead)
Having made / making mistakes
needing time to grow
not being able to meet all your goals imminently
feeling like you move slower than others
where you are living
not living an "aesthetic" live
struggling with social situations
AND SO MUCH MORE ILYYY
𓈒⠀⠀ׁ⠀⠀🦋⠀⠀ׅ⠀⠀ׁ⠀⠀꒱⠀⠀🌿⠀⠀ׅ⠀⠀☁️ ׁ⠀⠀ׅ⠀🪻 ᘏ⠀🫧⠀⠀ׅ⠀
as long as you try your best no matter what life throws at you then you’re doing a good job, be proud of yourself <3
: ¨·.·¨ : ` ·. 🦋
: ¨·.·¨ : ` ·. if you’re reading this i hope today is the start of an amazing week for you. be gentle with yourself, you deserve all the love and care in the world. sending positive energy your way, please accept
June affirmations
i am surrounded by love
i make my peace my priority
i do not say “yes” to everything
i do not doubt myself nor my abilities
i do not allow toxic people into my life
i do not stress over what i can’t control
i listen to my body and rest when i need to
Random pieces of advice
The world is less scary and chaotic if you lie down on the floor
Noticing different kinds of light (stars, candles, sunshine or city lights) can bring back the feeling of wonder and hope
If you can’t shower, washing your hands and face will help you feel better and cleaner
If you can’t clean anything else, changing and/or washing your bedsheets can do wonders
Fresh air and being outside in general can help with depersonalisation
Spending time around animals can help you recognise what’s important and calm anxious thought cycles
Techniques for emotional regulation in children can really help adults too
Putting random asortment of food on a plate without creating an actual dish still counts as a meal
Drink something warm
Delete that app
Treat yourself as if you were a kid. Buy yourself a toy, play around, learn about cool new things
Fast paced life isn’t morally better and it’s not good for everyone
There is no good reason to keep yourself hungry
Singing to your full lung capacity can be a great way to let out built up emotion
Tension in the face can cause headaches. Try to massage your face regularly
Nothing is as important as your health
You are a whole person on your own, you don’t need someone else to be there to deserve love and attention. Your life can be full as long as you are present
You should cry things out whenever you feel like it
Slow walks are still movement and they do count
It’s never as bad as you imagine it
Try changing your toothpaste flavor if you hate brushing your teeth
Anything can be a stim toy - one of my favourites is a heavy dragon necklace that has a complicated surfice. It’s fun to touch and hold and it’s not even “actual” stim toy
Procrastinating and feeling bad about it is true waste of time. Learn to truly rest. It takes the same amount of time but it is useful
Sometimes you have to force yourself to do the things that make you feel better
Don’t trust the thoughts you have after not sleeping for a while
Friendships don’t have to be forever to mean something
Knowing that I will be going back to school in the fall has me excited but also feeling “meh”. These past 3 years of not having to study or worry about deadlines has been so nice in regards to stress and anxiety. I was way to intense in undergrad and I plan on not making the same mistake this time around. I still want to get good grades, but I don’t need to have straight As like last time. I’m trying to start to study for my nursing certification so that way I will be back in the swing of things come August. When I think about it, it’s only 2 months away which is frightening. I’ll have to get a new laptop because my undergrad one is not up to the task.
I was off of work for a couple of days doing more computer work and going to a conference and i didn’t realize how much better my POTs symptoms got from not working at the bedside. I’m really hoping that my body can hold out till I am done with grad school so I can at least have my degree when I start to look for jobs that are less physically demanding. It sucks because I love my job now, my body just isn’t always up for it, especially in the summer.
good things are always happening to me
good things are always happening to me
good things are always happening to me
good things are always happening to me
good things are always happening to me
good things are always happening to me
good things are always happening to me
My mental state is like a half wilted flower that gets watered every now and then
I feel like I’m getting run over by a truck on the days I don’t take my Vyvanse and it just made me realize how awful I truly felt everyday and how I just got accustomed to that new “normal” of being chronically ill
Yesterday was an awful pain day. I told myself that I would push off pain medications for as long as I can since I know this is a life long ride. I usually use a heating pad, lidocaine patches, bio freeze, KT tape, and just repositioning as needed. I could not get my hip pain to go away with any of these. I took a gram of Tylenol and it only took the edge off. I was still tossing and turning in bed and just having a severe ache that wouldn’t go away in my hip and back. I tried moving pillows to rest my leg in different positions and that didn’t help either. Eventually the pain lessened but not until after I wanted to scream into a pillow. As a nurse I know there is a stigma about more potent pain medications, I give them out all the time since I work on a cardiac surgical floor (my patients have had their chest cut open so…). I think it is just me trying to hang on to some sense of normal and not accepting the fact that this chronic illness can leave me disabled possibly. I love my bedside nursing job and all the skills that I am able to use, but I know one day the pain is not going to be tamed with lesser forms of pain management and that really sucks. I don’t want to accept that yet and I’ll probable still be stubborn about this for a long time and then cry about it when I need too.
I got shoved off by another doctor yesterday as well. I explained to them the severe pain I was having and how I have EDS and pain management can be an issue. I was told “that’s not how it works”. I knew that I wasn’t going to get anywhere with this doctor so I just shut up and took the ultrasound they gave me and cried in the car. Like so many other doctor appointments before me… I know how to be a self-advocate, but after so many times of being shot down it can be really defeating. Sometimes I just need to rant so if you read this thanks.