Join the Conversation on
132 people
0 stories
10 posts
Explore Our Newsletters
What's New in

The fear of illness #chronic #Pain #OCD #Anxiety #PainfulBladderSyndrome

The fear of chronic illness is a tough one. Our minds simple just get on this fight and flight mode as they know something is wrong. The stress of the chronic illness at times can cause flare ups. Thus having faith and positve self talk is important. You don't need to be a toxic positive. You can say, "okay I know this is a tough time and I am gonna have to face alot, but I will get courage and the ways to be resillient enough in tough times. I am sure about it."


Four White Walls and Spoonie Things

I’ve been bedridden for 1 year 8 months and 9 days.
I’m on an indefinite pause while the world whirls past me.
It sucks not being a part of any of it. Being separated from everyone in the stale, dark, and yellowing rectangle room that I’ve memorized. While my friends, who have all moved on with their lives, eat, drink, and get married. (Pun intended).
I love them all so much. And still; I deleted all my social media accounts so I wouldn’t have to scroll through and be reminded of what I can’t have. At least for a time. It’s just too painful right now. (Plus I just downright do not have the energy whatsoever.) I wish I could confide in them about this but even they have told me that they don’t fully get it. (You know, my health stuff since I’ve gotten so sick). While watching a chronic illness tv show, it had a very apt quote which was about having a group of ppl who are sick go through the same thing, and other ppl, no matter how much they care will not fully get it unless it’s the same thing. So that’s why im here now. So Hi! Nice to meet you👋🏼 I’m Kay, a Spoonie like you. Sometimes I sleep 18-20 hrs a day because I’m up literally alll night long from severe pain, and simply because my body literally is dealing with 14+ diseases. And the elderly care home I’m at (despite the fact that I’m 25 yrs old) is not able to give me the care I really need to battle it. But im doing PT and trying to learn to walk again so I can be among the living again. I’m not sure what, how etc that will mean since this is my only place to live and I have no family to live with in the state, so it’s in Gods hands from here. Before I was bedridden I was a lab assistant and worked myself almost to the grave. I kept telling myself I wasn’t sick because I didn’t want to be. At the time I didn’t have any confirmed diagnosis’s other than Lyme and multiple forms of co infections so I felt like that wasn’t enough to stop working long and hard hours. I’ve always had 1-3 jobs and ALWAYS felt super terrible physically, I just told myself I was fine and pushed it down. I didn’t want to be sick, I wanted to live life.
Lol. Look how that turned out for me. 😂😆 YET, at the same time, I’ve learned a ton and although right now is an extra hard season, each season Jesus has taught me something, and always kept His promises to me. ♥️🤗
In closing, here’s the thing.
I don’t want to be on pause anymore. I’m doing my best to hit the reset button, but just as all you spoonies know, holy crap, does chronic illness kick butt. But keep going just like I am. (Not that I’m anything special). Don’t give up fellow spoonies. If I haven’t thrown in the spoons yet, after drs trying to literally kill me by illegal treatment, shaming me for losing my voice and saying I am faking it, refusing to read my text when it’s my only form of communication, and so SOOOOO much more that could fill a full series, and if other ppl, ppl I’ve read about and have endured much hardship can handle a lot, then so can you.
WE can. Together.
(You probably saw this the other day but I accidentally deleted it..technical difficulties😅.So here it is, again.😆💫✨)
#EhlersDanlos #EhlersDanlosSyndrome
#MastCellActivationDisorder #Viceralhyperalgeia #HypothyroidismUnderactiveThyroidDisease
#Fibromyalgia #raynaudssyndrome #TheBendyBunch
#hypermobileehlers-DanlosSyndrome(hEDS) #PainfulBladderSyndrome #ChronicPain

9 reactions 17 comments
See full photo

Cozy Sunday: Managing comfort with Interstitial Cystitis

Curled up all cozy for ultimate Sunday vibes 🥰

Full disclosure I’m wearing cotton pajama shorts without any underwear to help keep my bladder from flaring. Not the sexiest reason to go commando, but such is life with interstitial cystitis and hey I keep it cute and classy.

For those of you unaware, interstitial cystitis a.k.a painful bladder syndrome is a chronic bladder condition that basically includes all the miserable symptoms of severe urinary tract infection but without the infection.

I developed interstitial cystitis in 2016 after leaving a bladder infection untreated. The infection itself eventually healed on its own, but my bladder never really recovered. I should also mention I got this bladder infection after being raped, so there’s certainly some emotional trauma in there too. And it’s certainly not great being reminded of that every time I’m in a flare. Still working through that, but healing is holistic process.

My bladder is doing pretty okay these days. I’ve gotten decently good at understanding my triggers and sensing if there’s a flare coming on. And often that means preemptively taking some meds, limiting stress, and avoiding tight or restrictive clothing (hence the lack of underwear today).

I also try to stick to an IC friendly diet, especially when my bladder is feeling sensitive. So that usually means no coffee or alcohol and a whole long list of other foods and drinks. Basically l just drink a lot of tea these days which I don’t hate!

For anyone struggling with chronic illness, and IC specifically, and for anyone navigating through healing from sexual assault, know that you are not alone in your pain or in this journey to health.

It’s not always easy, and it’s certainly not simple, but the simple things always make it easier 💞

#InterstitialCystitis #PainfulBladderSyndrome   #ChronicPain   #ChronicIllness   #Pelvicpain   #SexualAssault   #SexualAssaultSurvivors


Does anyone else feel like their bladder has solidified or that there’s so much pressure inside it’s going to burst?

I started noticing this a little bit last night but it went away. Now it’s back with a vengeance. The first thing I did was catheterise to make sure it’s not retention related. Even with a completely emptied bladder it feels like this. It’s so bad I can’t even sit upright.

I spoke to my GP and basically begged her to do something. She’s given me some diazepam (valium) to help relieve the spasms. But I can’t go and collect them until after 4pm!

#chronicillnesswarrior #InterstitialCystitis #PainfulBladderSyndrome #Pain #bladder #Pressure


Does anyone have any pain relieving devices they would reccomend?

I have chronic migraines, endometriosis, interstitial cystitis with hunners ulcers, previously torn muscle in my back that aches, and knee and leg pain since I was little. I would love anything thats not a pain pill or scented cream or patch that helps. #InterstitialCystitis #Endometriosis #ChronicPain #Migraine #PainManagement #hunnersulcers #hunnerslesions #PainfulBladderSyndrome


Physical therapy #InterstitialCystitis

Seeing a physical therapist for my interstitial cystitis tomorrow. Really hopeful she will be able to help my condition, especially the link between the bladder and the pelvic floor.

Has anyone else with IC/PBS found physical therapy helped them?


Getting fed up with my #InterstitialCystitis .

Hi my names Karissa I’m 25 and I was recently diagnosed with IC about a month ago (feb 22) by cystoscopy with the hydrodistension. My doctor said my bladder wall was a “stage 4 alarm fire.” Looking back I’ve definitely had this illness undiagnosed for years. I’ve been dealing with this particular flare up since the beginning of January starting with UTI symptoms , then frequency, then came the chronic back pain, then came the pelvic cramping as harsh as labor pains along with menstruating/clotting so heavily I was sent to the ER. It took over a month of being tossed back and forth from doctor to doctor to actually figure out the issue was IC. On top of the IC I have had my period on and off (mostly on) the entire time...the longest I have gone without bleeding has been 8 days. Irregular periods are common for me since I have PCOS but it seems that the IC flare up has made my periods worse but my period also makes my IC worse. My pelvic region is basically at war with itself it seems. I was put on birth control but just got my period again today. Since my cystoscopey/ hydrodistentIon I have not improved in the slightest. My back pain is so bad I’m glued to the heating pads in my bed. I can’t sit or stand for more than a few minutes without discomfort. I can’t leave my house. I’m on disability leave from work. I can’t go a day without pain killers which I HATE taking bc of the side effects. I’ve switched to an all natural organic diet but barely have an appetite. I’m brought to tears every single day and becoming highly situationally depressed and numb and losing all hope in ever feeling better again. My urologist has mentioned getting the hydrodistension done with Botox but there’s a chance that could irritate my bladder even more and make me worse. I refuse to do the installation cocktail treatments after my first attempt being so TRAUMATIZINGLY painful due to how inflamed I was. I’m so frustrated with having 0 control over my own body. I just don’t know what to do anymore? I would like to hear from ANYONE who can shed some light on what helps them handle such a debilitating illness. #ic #InterstitialCystitis #PainfulBladderSyndrome #SituationalDepression #PolycysticOvarySyndrome


#InterstitialCystitis The smallest things trigger pain!

I get more frustrated with the triggers of IC than Lupus. The smallest bite or sip of the wrong foods/drinks trigger intense, bedridden pain. I've mastered balancing Lupus and modifying my lifestyle so that I can still be proactive, but IC is a whole new story and rather newly diagnosed.
#PainManagement #PainfulBladderSyndrome #Lupus #SystemicLupus


GP Surgery is Driving Me NUTS!

I’ve been using my GP surgery for the last 6-7years. For the first two years I saw a doctor who was not my assigned GP. She was very nice and she listened to me but then, one day when I was waiting to go in for an IBS review... I was told that she no longer worked for the Practice and that I would now have to see my assigned GP. I’d never even seen her around the Practice before and I was very dubious. I’d had trouble before with GP’s refusing to believe that my IBS caused me such an intense amount of pain.

Eventually I plucked up the courage to see ‘my’ GP... And she was wonderful. She listened to me - actually LISTENED. And if she didn’t know what something was (like my POTS) she let me explain it to her. When my diagnoses for Interstitial Cystitis was confirmed we slipped into a routine - if I was getting a lot of pain in my bladder along with any burning urine (or the usual signs of an impending infection) I would go to the Practice, she would dip test it and if there was blood and leukocytes in it she would treat me immediately with broad spectrum antibiotics whilst sending the urine to the lab for further analysis.

This was PERFECT. It prevented MANY kidney infections and unnecessary trips to A&E.

However. When she goes on holiday and I feel like these symptoms come up... I have to practically battle with the receptionist and on-call doctor to be seen! “The protocol for suspected urine infections is that you come in, drop off a sample, we will send it off and when the results are back in a week or so, we will give you antibiotics.” No matter how much I try to explain my condition and the risks... They simply don’t want to know. I have been called (to my face) an attention seeker, a hypochondriac and a painkiller addict. Which is frankly disgusting. I take my medication on time and ONLY at the dose prescribed.

Anyway, quite recently a similar series of events took place. They would not give me antibiotics straight away. A week after I started displaying symptoms, which was when my urinalysis came back, I was at the hospital hooked up to strong IV antibiotics because the infection had travelled quickly and painfully up to my kidneys.

Despite this... No one at this Practice will listen to me. I just want to scream! I do NOT enjoy taking antibiotics that make me feel so so sick.

GAH! #InterstitialCystitis #UTI #PainfulBladderSyndrome #Infection #GP #rant #Vent