Interstitial Cystitis

Join the Conversation on
Interstitial Cystitis
6.9K people
0 stories
844 posts
About Interstitial Cystitis
Explore Our Newsletters
What's New in Interstitial Cystitis
All
Stories
Posts
Videos
Latest
Trending
Post

How do you say no to your little nieces, nephews and children?

I’m currently a first time aunt (although my sister is 21 weeks pregnant right now) to an absolutely gorgeous and clever little boy named Oskar. He’s 22months old, and I absolutely love playing with him. I chase him, I crawl towards him on my hands and knees. I play rough with him (he loves this), and I tickle him until he’s belly laughing.

He is truly the light of my life - since he was born I’ve refused to self harm and I’ve really started taking better care of myself. But sometimes when we’re playing, I start to get pain or get really exhausted and I have to tell him no and sit down for a bit. But then he comes over, grabs my hands and tries to pull me up and make me follow him.

It really breaks my heart because I know he doesn’t really understand and he thinks he’s done something wrong. How do YOU communicate that you need a break? Is there a way to do it so he understands? He can get quite upset. Aside from his dad, I’m the only person that really plays with him and makes him laugh.

Any and all advice would be greatly appreciated!

#chronicillnesswarrior #ChronicPain #POTS #EDS #NAFLD #BPD #LiverDisease #Jointpain #Diabetes #InterstitialCystitis #Migraines #Depression #Fatigue #Children #Advice

32 reactions 9 comments
Post

Joint Pain

Hey, everyone. I hope you’re all doing a lot better than I am.

For the last four days it’s been about 30°C and I’ve had enough.. Tomorrow it’s meant to hit 32°C.

I’m doing everything I can to stay cool and hydrated - I’m drinking between 2 to 3 litres of water/squash. I have a fan on me 24/7. Somehow, I’m managing alright overall - I haven’t fainted or blacked out. And at night time I’ve pretty much been falling asleep very very quickly when I get into bed.

HOWEVER… My joints are killing me. They’re a little swollen, very achy and sometimes even feel like they’re creaking, if that makes sense? It’s mainly my wrists, fingers, knuckles, elbows, knees and ankles. If I squeeze my fingers together or squeeze my wrists it makes the pain better. Which is weird but that’s what happens. But I can’t exactly sit here and squeeze every joint. I don’t have enough hands, haha!

Does anyone have any advice for it? It’s far too hot to wear my compression stockings - I’ve been keeping my feet elevated a little bit instead. Is there anything else I can do?

Thank you all in advance

#chronicillnesswarrior #ChronicPain #POTS #EDS #NAFLD #BPD #LiverDisease #Diabetes #InterstitialCystitis #Migraines #Jointpain #SoreJoints #PainfulJoints #Heatwave #toohot

5 reactions 3 comments
Post
See full photo

Since you all loved the photo of him the other day… I present - Loki being cute.

As I said, you all loved my beautiful Loki the other day. Today, he’s been curling up around my feet cus my blanket was too warm for him. I’m feeling much better today - the antibiotics have done their job, as have the heavy painkillers.

Thank you all for wishing me well. I hope you all have a fantastic and easy week ahead of you!

#chronicillnesswarrior #POTS #EDS #NAFLD #LiverDisease #Diabetes #Migraines #InterstitialCystitis #ic #bladderdisease #BladderPain #ChronicPain #Kidneyinfection

14 reactions 3 comments
Post
See full photo

Animal Intuition - He Knows.

So, I’m in the middle of an Interstitial Cystitis flare and possible kidney infection and I’ve been in so much pain with it and I’ve been utterly miserable. Mostly just curled up on my bed with a heat pad on my bladder area.

Loki has been the sweetest kitten/cat. Whenever I’m unwell he does tend to stay close to me. But earlier while I was half laying down, he just shuffled up to me, and laid right across my lower belly, nuzzling me and every so gently padding at my belly. He has completely melted my heart. He’s been doing it all morning. If I get up to get a drink or use the bathroom, he sits and waits and then when I’m back, he comes back and lies across my belly. 🥹

I love him so much.

#chronicillnesswarrior #ChronicPain #InterstitialCystitis #BladderPain #POTS #EDS #NAFLD #LiverDisease #Diabetes #Migraines #BPD #Depression #Anxiety

69 reactions 15 comments
Post
See full photo

Ode to My Cruel Master

I was inspired by how much my previous poem, seemed to inspire many of you, The Mighty. It got me thinking about chronic pain and it’s ability to alter our lives. I offer this poem to all the chronic pain warriors… I hear your silent screams, and I see the darkness that shrouds your everyday life 🫶

Pain is impatient, pain is cruel, and unkind.
Boasting of its grip, its reckless pride intertwined.
In its shadows, the world is reshaped, redesigned,
A constant echo, always there, unrefined.

Delighting in the shadows of evil's cast,
Pain’s truth is cruelty, stark and clear.
Attacking, betraying, fostering fear,
Its grip lingers over memories of a peaceful past.

In the depths of its ceaseless cruel dance,
Moments once joyful are stripped of their chance.
Pain lingers, persistent, in every glance,
A silent scream, a stifling expanse.

Pain’s lens, renders the body estranged,
Once a sanctuary, now forever changed.
Fear, mistrust, and memories deranged,
In its grasp, life’s many joys are rearranged.

Yet within the storm, a flicker remains,
Not of love, but of strength, unchained.
For each day faced, and every battle gained,
Is testament to the warrior’s spirit—unstrained.

The world may darken, colours slowly fade to gray,
Yet the will to endure keeps the abyss at bay.
For within the prone sufferer, light finds a way,
A beacon of hope, that pain cannot sway.

In this piercing realm of unrelenting strife,
The chronicle of pain is more than just life.
It is a testimony of resilience: to face the knife,
And finding a way within, the strength to survive.

Image: Francisco Goya, Self Portrait With his Doctor

#ChronicPain #Arthritis #RheumatoidArthritis #EhlersDanlosSyndrome #Fibromyalgia #MyCondition #MightyPoets #MightyTogether #AnkylosingSpondylitis #BackPain #ComplexRegionalPainSyndrome #Endometriosis #InterstitialCystitis #Lupus #Migraine

24 reactions 3 comments
Post

Pharmacy Switch

I need to switch to a different pharmacy that will deliver to my home (I’ll probably use like Uber delivery or something…) I’m in the US. Does anyone have any input on what pharmacy has been the best for them? (Or conversely which pharmacies to definitely stay away from? Like I HATE CVS. They are the worst.)
I’m hoping for some info from fellow Mighty spoonies before switching. :) I’ve been using Walmart for years.

#EhlersDanlosSyndrome
#Migraine
#PTSD
#PosturalOrthostaticTachycardiaSyndrome
#ComplexPosttraumaticStressDisorder
#Autism
#ADHD
#ADHDInGirls
#Anxiety
#Depression
#LymeDisease
#MastCellActivationDisorder
#SensoryProcessingDisorder
#Gastroparesis
#InterstitialCystitis

4 reactions 7 comments
Post

How do I explain myself to my dentist…?

So, when I was 7 years old I had a pretty horrific dentist experience. Basically, I had to have a tooth removed. But the dentist said that because it was a baby tooth, I wouldn’t need any numbing injections. He was dead-fricking-wrong. I remember some nurses holding me down, my mum shouting, and what I can only describe as a pair of pliers. I remember screaming, and there being a lot of blood.

So for years I’ve been terrified of them. I couldn’t even walk on the same street as a dentist’s office without having a panic attack. In the last couple of years I’ve had to have my GP give me diazepam (Valium) just so I can sit in the damn chair. I’ve slowly built trust with my dentist, and I don’t need a huge dose to get me in the chair anymore.

Anyway, late last year I finally got to a point where I no longer needed to have any more work done. I’ve had four teeth removed (thankfully back ones), and several fillings. At least 9 of them. Since I started going regularly a couple of years ago, I’ve learned how to brush and floss properly. And according to the dentist at my last appointment last year, since brushing and flossing properly, I’ve managed to reverse the remaining decay I had left. Or, the start of the decay that was there.

But here’s the thing… The last 3-4 months have been so so stressful. I really stopped taking care of myself. I stopped washing regularly, I stopped eating properly and consumed loads of sugar (I’m type 2 diabetic), I stopped brushing and flossing my teeth, I barely took my medication… I was spiralling into an abyss. I felt angry and hopeless literally 24/7…

Then 6 weeks ago I spoke to my GP who then increased one of my antidepressants. Finally, a few weeks ago I started to feel a bit more like myself and I started taking care of myself better.

I’m overdue for a dental checkup and I’m just so scared. I’m worried they’ll be mad, and lecture me or judge me. And I’m also worried that I’m going to have to have more teeth removed… Any time I think about making the appointment I panic all over again and get really overwhelmed… What should I do? How do I explain myself in a way they’ll understand?

Any and all advice is greatly appreciated and welcomed.

#AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #POTS #EhlersDanlosSyndrome #EDS #jointhypermobility #NAFLD #LiverDisease #BPD #BorderlinePersonalityDisorder #Diabetes #Migraines #InterstitialCystitis #IBS #GERD #AcidReflux #Dentist #mouthproblems #Advice #Depression #Anxiety #panic

14 reactions 5 comments
Post
See full photo

Pleurisy and Animal Empathy

I know I keep making posts about my Loki, but you guys have no idea how much this kitten is helping me.

I’ve been diagnosed with Pleurisy again - the last time I had it was March 2021 and it was so severe I was hospitalised multiple times and the lower part of my right lung had collapsed. The pain was so bad, I was praying for something to kill me. It was truly agony. I couldn’t speak, because I was gasping for breath even when I was sat doing nothing. When the doctors asked me to tell them what had happened during that day, I could barely get more than two words out without sobbing and gasping for breath like I was slowly drowning. It was hell.

Thankfully, during the middle of last week I started to notice the early signs and was able to see my GP immediately, and get started on antibiotics and my inhalers. Which has helped massively but I’m still struggling to breathe and getting quite out of breath when I do basically nothing but rest.

Since I’m basically on bed rest and I’m in pain (more than usual), my mental health has been a bit rocky and been going downhill a bit. But Loki has been with me the whole time. He’s been curled up with me, or sitting/lying on my belly (and sometimes shoulder) and watching TV with me. And at night? He crawls under the covers and either curls up against my belly, or falls asleep on my pillow, at the back of my head with his head resting on mine.

He melts my heart and I’m so lucky to have him. Don’t ever tell me that cats don’t know or understand how we feel, or that they don’t care.

#chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #EhlersDanlosSyndrome #NAFLD #LiverDisease #Diabetes #Migraines #InterstitialCystitis #Depression #BPD #BorderlinePersonalityDisorder #Pleurisy #Asthma #ChestInfection #inhalers #TherapyPet #Empathy #Cats #Kittens #animaltherapy

62 reactions 21 comments
Post
See full photo

This kitty is too cute!

As some of you will have seen, the other day I made a post about my Loki always knowing when I need him, and the way he calms me down when I’m anxious or in pain. He’ll come over and curl up in my lap or by my side.

I’m so lucky to have him.

HOWEVER. This is what I was greeted with this morning. 😂 He was sat right on my chest, just staring at me. It was pretty unnerving. When I didn’t move, he let out this tiny squeak of a meow and then began patting at my face with his paw.

“Mum. Hey, mum. Are you awake? Get up, wench, and feed me. I’m STARVING.” 😑😂

#chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #NAFLD #LiverDisease #InterstitialCystitis #Diabetes #Migraines #BorderlinePersonalityDisorder #Depression #Anxiety #TherapyPet #TherapyAnimal #Cats #Kittens #TherapyPets

49 reactions 19 comments