#interstitial cystitis | Explore Tumblr Posts and Blogs

eatsyourlungs · 2 months

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if you have a chronic illness or disability i need you to hear this- this will be long.

you're allowed to feel sad/depressed/down, you're allowed to grieve your life and/or yourself, you're allowed to want it to be over.

you're allowed to have happy moments, you're allowed to enjoy your life and/or aspects of it, you're allowed to smile and just because you feel happy doesn't mean your pain is less.

good days are good and bad days are bad, and it's okay if you have no good days, and it's okay if you have mostly good days. it's okay if you're not diagnosed, it's okay if you are, and it's okay if you have lots of diagnoses. any of this doesn't make you any less valid.

no one gets to tell you that what you're feeling is not what you are feeling, just because you portray a picture of yourself to be something differently.

fuck being 'strong' and 'brave', you're surviving and every minute that you do is a minute of your life that's yours and only yours to choose how you live, don't let other's opinions on how they think a chronically ill/disabled person should live govern or influence your life. it's yours.

love you all, my dears

#disability #chronic illness #chronic pain #chronically ill #disabled #chronic fatigue #fibromyalgia #postural orthostatic tachycardia syndrome #ehlers danlos syndrome #interstitial cystitis

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chronicallydragons · 3 months

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Ah yes, my favorite chronic illness game: is this normal, is this new, or am I dying?

#everyday with a chronic illness is a high stakes guessing game #there is no winning #Why does my stomach hurt?#chronic illness #fibromyalgia #me/cfs #disability #gastroparesis #migraine #postural orthostatic tachycardia syndrome #chronic fatigue #chronic pain #pots #hEDS #MCAS #interstitial cystitis #IBS #am I dying?

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thatadhdfeel · 22 days

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hi reddit my partner is weaponizing incompetence by [literally a symptom of their disability] so i told them to eat shit. AITA?

#so glad my partner isn’t like this #but yeah weaponized incompetence is def a thing However #i see ppl use the term as an excuse to be ableist and it’s so annoying #interstitial cystitis #ptsd #adhd #bipolar #autism #audhd #actuallyautistic

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candidlychronicsblog · 1 year

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Chronic illness is a lot of picking + choosing. Picking and choosing what events/parties/outing you go to, picking and choosing what family you see on holidays, picking and choosing what errands you’ll run… picking and choosing how much you push your body so you don’t completely end up in a worse spot than you began. It’s a lot of disappointment and missing out and wanting to attend more things than your body will allow. We have to listen to our bodies or we will be unable to function for days or weeks (sometimes longer).

#chronic illness #chronic pain #chronicillnesslife #chronicpainlife #endometriosis #fibromyalgia #interstitial cystitis #hypermobile ehlers danlos

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seppukart · 2 years

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Babygirl my brain is creating so many physical aches unexplainable by modern medicine

#fibromyalgia #chronic fatigue #chronic pain #chronic illness #ibs #interstitial cystitis #spoonie #spoons #disabled #dermatitis #central sensitization #mental illness #somatization #my posts

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vizthedatum · 1 month

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My functioning disabilities ARE NOT personality flaws.

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thatsprettylane · 1 year

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Fucked up that society conditions us to be ashamed of bladder and bowel problems. Like those are organs. Nobody is embarrassed if their kidneys don’t work right.

#ibs #ic #interstitial cystitis #irritable bowel syndrome #bladder problems #bladder pain #bowel problems #incontinence #chronic illness #ableism

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otabekisautistic · 6 months

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okay this is a shout into the void but does anyone have any advice for staying functional at work/in day to day life when you have recurrent utis/possibly interstitial cystitis? tmi below the cut

i can’t be away from the bathroom for more than five minutes when i’m like this and this happens like once a month for several days. with the nature of my work i can’t leave my workstation this frequently. i literally can’t work under these conditions. idk what to do

#medical advice #personal #tmi #recurrent uti #interstitial cystitis #chronic pain

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lifethroughfingertips · 5 months

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Christmas is coming. This year I didn’t qualify for the small loan I usually get from my credit union. I worry even when I get that loan so I’m especially stressed. I’ve missed some work days lately as I recently found out I have a new lesion on my brain, a new lesion on my spine and one of my spinal lesions has grown. This scares me because it could mean after 10 years my ms has turned progressive. I know it’s tough for everyone right now but if anyone can help a chronically ill girl afford gifts for her loved ones or wants to just get me a gift I’d be so grateful 🥺❤️

$juliadrab

#spoonie #chronically ill #sick #sickie #spoons #multiple sclerosis #lyme disease #chronic illness #chronic pain #chronic fatigue #chronically sick #help #Christmas #spirit #interstitial cystitis #arthritis #spinalhealth

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chronicallydragons · 3 months

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Very rude that fun spoons are still spoons

#my body is committing hate crimes against me #me/cfs #PEM #post exertional neuroimmune exhaustion #fibromyalgia #chronic illness #disability #migraine #postural orthostatic tachycardia syndrome #chronic fatigue #chronic pain #pots #gastroparesis #MCAS #interstitial cystitis #hEDS

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thatadhdfeel · 7 months

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that chronic pain adhd feel when you’re feeling hyperactive and wanna get up and run around BUT UR BODY LITERALLY CANT

#my IC is acting up :(#feels #adhd #actuallyadhd #thatadhdfeel #tadhdfw #mod jordan #interstitial cystitis

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candidlychronicsblog · 1 year

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I wish more people understood that resting because you’re chronically ill and flaring is mandatory. We will not be functional and we may even end up in the hospital if we don’t. Resting for self care/to chill out is something you choose to do (and it’s healthy!) but it isn’t the same thing…

#chronic illness #chronic pain #chronicillnesslife #chronicpainlife #endometriosis #fibromyalgia #interstitial cystitis #hypermobile ehlers danlos

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seppukart · 2 years

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Doing "my best" is doing as much as I can without being in unbearable pain and/or injuring myself. I am glad that you have a body that has never made you reevaluate the definition of this term, but that is not the case for some people.

#central sensitization #chronic fatigue #chronic illness #chronic pain #disabled #fibromyalgia #interstitial cystitis #somatization #spoonie #actually disabled #physically disabled #cfs/me #myalgic encephalomyelitis #cripple punk #disability #disabled pride #disabled problems #disability awareness #my posts

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vizthedatum · 2 months

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I’ve been in therapy for a while - was mandated to go by my school in senior year of high school (my first therapist was an asshole and got fired - he yelled at me and stuff but I didn’t report it), then really briefly in sophomore year of college, and then consistently since 2017 after I exited a very tough relationship (I remember my obgyn telling me how worried she was for me, told me to go to therapy, and told me that maybe I should admit myself to the local psych ward for a bit… while he was in the waiting room). I’ve had a couple therapists since 2017 including a brief stint at an IOP. I refuse to be admitted to any psych wards due to my trauma of seeing my brother be admitted on and off for over a decade (and I guess, other reasons).

I think I considered my therapy more seriously in 2017 but I didn’t really internalize my lessons and stuff until very recently.

It took a long time for me to dissect my sense of self, and I’m still working on it.

I have a lot that I’m undoing from my childhood.

Simply going to therapy isn’t an overnight, or even overyear (I made this term up), fix! Meaning, therapy is just one ongoing thing you’re doing for your self-care.

It’s okay that it takes you a while to wade through your life to figure out where you’re headed.

It’s okay if you succumb to your old patterns time and time again. I know I have! They’re patterns for a reason - it’s been very hard for me to break out of them, but I know I’m making a lot of progress.

I didn’t even fully acknowledge my transness and neurodivergence until 2021. (Also me: I didn’t even fully consider myself disabled until 2014 when my doctor (who diagnosed me with interstitial cystitis) told me so. But like I’ve been disabled my entire life - and I’m so burned out by telling myself I’m not.)

Being your authentic self is hard especially when society tells you that you should do XYZ and then you’ll be healed.

I remember my current boss responding to me “Still?” after I told her I was still healing after several weeks of a horrible bout of physical infection, physical flare ups, and a huge exacerbation of my PTSD symptoms last summer. She didn’t even know about my chronic disabilities or the traumatic events of my life - all she knew was that I had a couple of doctor’s notes about how I had an infection and I needed to recover.

I have come to accept that people will not understand the chronic nature of what I go through, let alone the mental aspect of it all. After all, my high school counselor told me I’d be homeless because I was missing so much school due to my migraines - it didn’t occur to her that I was a high achieving student or that I may be going through other underlying health or environmental things - she told a teenager that, and it’s haunted me ever since.

I have disappointed so many people in my life.

But I know that moving forward, I have to stop feeling so much shame about being me. Even if I disappoint myself, I must forgive myself and keep going.

I am loving myself more and more all the time.

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moonlightandmarble · 8 months

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Alright so, our story so far

About five weeks ago I start having symptoms of a UTI. Given a test and antibiotics like usual and go about my business. Pain is at an uncomfortable level but not out of the ordinary. However, the antibiotics don't seem to be working.

Okay another pee test and a different antibiotic. I'm allergic to so many of them so let's go with the ol standby Cipro.

Doesn't ease symptoms, actually they're getting worse. Pee tests keep coming back as contaminated. Fucks sakes. Take one more pee test.

Pee test that FINALLY gets cultured shows a rare random form of staph.

Okay! Time for a different antibiotic. Pain is increasing. Really not having a good time. I can barely get out of bed. Symptoms not getting better.

Return to doctor. What do? Pee test negative now. We don't know what's wrong with you make an appointment with a urologist otherwise uhhhh go fuck yourself I guess.

Okay maybe I can make it till Thursday.

Pain gets out of fucking control to the point I want to scream. Go to the ER

Shit we don't know but maybe it's chronic cystitis. But we need to keep you for a few days because the dip test says you've got an infection.

What the fuck, do I have an infection or not???

Stay in the hospital get injectable antibiotics and pain medication. Also get poked and prodded by multiple doctors. Experience IV infiltration. 0/10 do not recommend.

Infectious disease specialist believes that I don't have an infection and that the staph was just hanging out on my skin and ended up in the sample somehow. Okay now what.

MORE PEE TESTS. Nitrites present so they keep up with the antibiotics. I spend three days in the hospital.

I finally get to go home. I HAVE BEEN IN CONSTANT PAIN SINCE AUGUST 13TH.

See urologist. Yep congrats you actually have interstitial cystitis

So I've got a prescription for oxybutiyin and now I don't know what to do with myself

Anyone have any suggestions? I still hurt...

#interstitial cystitis

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spooniestrong · 5 months

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Kidney / bladder ultrasound tomorrow... hope I can hold the 32 oz I have to be finished drinking by an hour before my test, plus a half hour drive to my test site... send good vibes bc I'm not sure this is going to go well.

Any ppl with experience, please send me any tips you have.

Thanks 💙🥄

#personal #spooniestrong #spoonie #lupus #interstitial cystitis #kidney mass

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