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#spoonie life
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Do wanna know why us spoonie have trouble telling people we're sick?
Because we were raised by parents who were angry and who doubted us when we wanted to stay home from school cuz we were sick. We were surrounded by nurses and doctors who told us we were overdramatic or crying too much. We had elderly people tell us how happy we should be that we aren't in pain and should treasure our youth. We had family and teachers look down on us for spending any extended time in bed or on the couch. We had TV shows shame people who weren't healthy.
We live in a society where being ill is seen as being about how the person who is sick just isn't doing enough. Unless you have cancer, it's your fault somehow. You could eat better, exercise, or see better doctors. It is impossible for them to see illness as inevitable.
And it sucks that no one understands or sees what we go through. But society is broken and flawed and has no compassion for us poor spoonies.
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disabledprincesses · 8 months ago
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Fun fact
Showers suck. Heres some tips
You can wash your hair in the sink, with your clothes on. Its a lot less active steps.
You can get into the shower and only wash your body so its quick and only one step.
Also, try getting a dry electric razor (kinda like the ones for shaving long beards or hair) so you can sit in your room and shave.
You can buy a shower chair for things like fatigue, sensory issues, pain, and even if you don't feel "disabled enough," if the aid would benefit you, why would you continue suffering?
You can brush your teeth in the shower so its a shower thing and not something else you have to do after a shower
Make sure you have enough time to rest, sit down, regain spoons, dissociate if it causes that, or watch something to calm down.
Have everything already laid out, like clothes and your hair brush, etc. so its all there afterwards
Remember, you can take a shower literally whenever, sunrise, 1am, noon, 4pm, 10am, doesn't matter.
On days you have to shower, try having less things on your todo list so its not over whelming.
Eat afterwards, abled people may be able to "just hop in the shower" but for us, its like a whole third of our day sometimes, so its okay to have to recover after.
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septic-dr-schneep · a month ago
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Chronic illness is feeling borderline okay for a few minutes and trying to accomplish like five things, and then you pay for it with a gamble of whether you’re going to pass out or cry
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exlibrisfangirl · 7 months ago
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Do you ever get hit with the unwelcome realization that the rest of your life is going to be like this, and you feel like you've been punched in the gut by the Hulk? Like... you suddenly realize that every, single day of the entire remainder of your life is going to be an exhausting, painful, uphill struggle for survival... and the resulting wave of shock and grief and anger that washes over you is so overwhelming, that you actually feel like you've had the wind knocked out of you?
I don't want to live my life in survival mode.
It's not fair.
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willblogforspoons · 8 months ago
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Why do healthy people expect everyone to forgive their bad mood when they're sick but expect chronically ill folks to be positive at all times?
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https://twitter.com/sickandsalty/status/1419254138639163394?s=20
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lifewithchronicpain · 8 days ago
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Abled bodied people will just never understand how difficult it is to be vertical sometimes. Like I don't mean just standing, but sitting upright too. The longer I can't lay in my bed with my legs horizontal, and back supported on a gentle incline, the worse the pain and the longer it takes to recover.
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not-your-pussikat · 2 months ago
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Sending much love to all my fellow spoonies! 💛
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SPOONIE THINGS NO ONE TALKS ABOUT PART 22
Distractions are essentials.
Whenever you are not distracted, as a spoonie, that just means that your brain can pay more attention to your pain.
For me, I can't survive without something to occupy my mind. Something to push out the constant throbbing, something to escape to.
Because when your outer world is silent, your body seems to scream even louder than before.
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feveredcharm · 4 months ago
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Low level pain as a one-off is better than high level 100%. But let me explain a thing for those in the back: low level pain all the time will drain the life out of you. Constantly being in a state of 'At least one part of my body is weak and/or not functioning due to level 4-6 pain' will eventually leave you facedown on the floor not wanting to get up because you don't want to deal with it anymore.
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septic-dr-schneep · 2 months ago
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My body: Hey, if you were taking better care of yourself maybe I wouldn’t be in so much pain.
Me: Okay, I’ll try. *does things to better take care of myself*
My body: GHH HOW DARE -- THE HECK DO YOU THINK YOU’RE DOING???? *Windows XP shutdown noise* *Blue Screen*
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autistickaz · 2 months ago
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Let disabled people make their own calls on what activities are worth it.
For example- I went to comic con this weekend. I stood for a long time in a hot, crowded environment. A situation that I know will aggravate my POTS and cause my joint pain to worsen. As well as being overstimulating. I will need at least one recovery day if not more. BUT I loved it. For me it’s worth the price that I will have to pay.
I have to pay a price for every activity that I do. And only I can decide which of those activities are actually worth it.
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rainbowremmy · a month ago
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Me every summer: I can’t believe I used to take the max amount of ibuprofen every day. I’ll never do that again! my cane is good enough for me!
Me the second fall hits: *chugs the anti physical ouchy skittles*
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