Interstitial Cystitis

I’m actually pretty pleased with myself today.

This morning I went and had my flu and Covid vaccines done. Then I came home and I changed my sheets and bedding, followed by a lovely hot shower, and then I wrote two pages of my novel after being stuck with writer’s block for ages. I’m a little sore after all the movement, but I got through it. All over and done with now - I can rest. 😌😴

My GP is always telling me that I should celebrate every victory - even the itty bitty ones. I’ve made myself a lovely hot chocolate with a dash of Bailey’s Original as a treat, and I’m huddled up with my fluffy hoodie on now, all cosy like.

#chronicillnesswarrior #ChronicPain #POTS #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #EDS #EhlersDanlosSyndrome #Jointpain #jointhypermobility #InterstitialCystitis #BladderPain #Diabetes #NAFLD #LiverDisease #BPD #BorderlinePersonalityDisorder #Depression #Migraines #sciatica #BackPain #littlevictories

Guys, I'm really struggling at the moment. Every single day of my life, I'm in pain. I've accepted it as a fact of my life. But a few weeks ago I randomly injured a muscle in my lower back that has been locked/cramped up ever since, and is pretty much crushing my sciatic nerve. I'm getting such painful burning-aching sensations CONSTANTLY. There is no reprieve.

I can't get comfy when I'm sitting, and I'm barely sleeping at night. My doctor has examined me and she's pretty sure it's my sciatic nerve that's been pinched and that I need the appointment for physio. But the earliest they could fit me in was 23rd October - 10 days away! My doctor has prescribed a course of diazepam (valium) to help ease the muscle and try and abate the muscle spasming around the nerve. Which works to an extend but I really can't do much. I can't lift anything heavy, etc.

I am truly miserable right now. And I have been for the last two weeks since the injury. It just doesn't stop... My nephew came over on Wednesday and I couldn't play with him the usual way I do - chasing him about, lifting him up and bouncing him. And he just kept coming and cuddling my leg, raised his arms at me and said; "Up!" It broke my heart when I said no. He walked off with his head hung down and his bottom lip poking out.

Since the injury, I've eaten a LOT of junk food. I just cannot stop, and I don't really care all that much. I know I'm comfort eating (I used to do this a lot in the past), and I know it's not good for me. I'm just finding it really hard to give a crap about it.

What should I do? I'm so close to tears... I need a nice long, tight hug/cuddle. It's so hard to keep going.

#POTS #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #FattyLiverDisease #NAFLD #Diabetes #BPD #BorderlinePersonalityDisorder #InterstitialCystitis #ChronicPain #sciatica #BackPain #exhausted #mentallyexhausted #feelingdefeated #chronicillnesswarrior #Advice

Hey there.

This is probably a bit of a weird question but I’m curious… Every night, I wake up every 90minutes or so because I’m desperate for a pee. It’s seriously disrupting my sleep and it’s exhausting. (And yes, I already limit how much I drink in the late afternoon/evening time).

I know how to self catheterise when I need to, but they are in and out catheters. You use them once to pee and then throw it away. But I was wondering if there’s anyone here in the UK that is allowed to insert a normal catheter that collects in a bag? I’d only insert it at night so I don’t have to worry about getting up.

I used to work at a hospital and I know how to do it all myself, so I wouldn’t require a district nurse to come and put it in every night. I’d just need the supplies.

Do you think my GP will let me do this?

#chronicillnesswarrior #chronicpain .#pots #autonomicdysfunction #eds #ehlersdanlossyndrome #jointpain #liverdiseqse #interstitialcystitis #diabetes #migraines #bpd #borderlinepersonalitydisorder

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

Hi, my name is Rachelvilateds. I'm here because

#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #ADHD #EhlersDanlosSyndrome #InterstitialCystitis #Narcolepsy

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