BladderPain

Ive not been on here in a while .Since march I have long term catheterised which has caused so many issues,non stop hospital stays which along the way now dealing with other problems.Mentally I am so drained I feel miserable that I'm not who I was 9 months ago,I can barely do anything.ive become basically house bound and most days the pain stops me even doing simple daily tasks.i feel like such a failure as a mum and as me in general .I hate seeing myself in the mirror now with cathter, more scars from the skin cancer biopsies,having to use walking aid due to the spinal issues & pain I just hate what I see and what i am now.But I'm so fed up feeling this way and I try so hard but each day between pain and everything going on my aims to try and feel better seem to just completely become non existent.....

I hope everyone is well ♥️
#ChronicIllness #ChronicPain #BladderPain #BladderProblems #catheterlife #Endometriosis #MentalHealth #MentalHealthAwareness #mentalhealthmatters #Anxiety #Depression #biopsies #SkinCancer #CheckInWithMe #MentalHealth #AloneTogether #loveyourself #Selfcare #Melanoma #Bekind #loveyourself

I live with my mum as she’s my carer these days. Because she has issues with her back, she doesn’t clean the house very often. I try and manage what I can, but usually it comes down to her. The house isn’t exactly a pig-sty but it’s definitely not clean and tidy either. The stairs and walls have marks all over them from spills, or people with dirty hands touching things. There are sometimes bin (trash) bags on the upstairs landing from when we’ve tidied up a bit and need to take the rubbish outside.

Onto the bathroom… As I said - I help when I can. But usually it’s mum that does it. And it isn’t done very often. Because of this, inside the toilet at the very bottom off the bowl (where it flushes away) is covered in this awful grey/green/black grime. And there’s often a bit of a weird smell. I usually give the bathroom a bit of a spray with air freshener, especially when we have company.

Most people don’t say anything, but when people (usually other family members) DO mention the state of the toilet… Mum throws me under the bus. She will sit there and tell whoever asks that it’s entirely my fault. That my bladder issues make my urine do strange things inside the toilet. Like growing that grime and dirtying it up. And that that is responsible for the bad smell.

And it’s really starting to upset me. I don’t think it’s my fault. At least, I really hope it isn’t. But the way she says these things just really embarrasses me. So, I guess my question is… Does anyone else have this issue? That your toilet is all grimey and gross because of their pee? Or is this all just a load of crap that she’s made up, and it has nothing to do with me?

#chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #BorderlinePersonalityDisorder #InterstitialCystitis #NAFLD #LiverDisease #Diabetes #BladderPain #BladderIncontinence #Advice

So, I have quite a few chronic health conditions, but the two that give me the most pain are Ehler's Danlos Syndrome and Interstitial Cystitis.

As a result of this, I live in pain every day of my life. But I have good days and bad days. I have flares.

Today, strangely, is a very good pain day. It's nowhere near as far as it usually is. If I were to put it on a scale with one being the lowest and ten being the absolute worst... I'd give it a 3. On the average day, I tend to be around 5 or 6. So being feeling like a 3 is... Weird.

I'm so used to the level of pain I'm usually at. But today I feel so strange. It feels like something isn't quite right and it honestly makes me feel very nervous. And I have no idea why. I feel ridiculous.

Does anyone else feel like this when their pain is better than usual? I feel like an idiot.

#chronicillnesswarrior #ChronicPain #POTS #EDS #EhlersDanlos #posturalorthostatictachycardia #InterstitialCystitis #BladderPain #Jointpain #IBS #cramps #NAFLD #LiverDisease #Depression #Anxiety #BPD #Weird

Hey, everyone. How was your Christmas? Mine was pretty awful, honestly. I'll try and explain it as best as I can.

Around 4 years ago, my mum was talking to my big sister (her name is Dawn), and she told her about my health conditions/problems. Dawn then proceeded to accuse me of faking my health issues. Despite the many scans and test results clearly showing they are real. And then, shortly afterwards, she said that any gifts or presents I buy for people for birthdays/christmas (and everything else) are worthless because the money comes from a 'government handout' (disability benefits). After learning this, I refused to talk to her unless she apologises. So, we didn't talk for several years.

My little sister (Jess) gave birth to my nephew in 2021, and I love him very much. Since Dawn doesn't live near us, she was only able to visit this passed Christmas, and she stayed at Jess's house for two weeks.

Originally, before Dawn announced she would be coming, the whole family was going to go to Jess's house for Christmas dinner and whatnot... But once she booked her tickets and everything, Jess said that I wasn't allowed to go to the event. I wasn't allowed to spend time with the whole family. Which REALLY upset me. So much so, that I seriously comfort-ate for a couple of weeks. I was binge-eating whatever I could get my hands on. And I spent the entire of Christmas day curled up in bed watching stuff on my laptop. It was my first Christmas alone and I hated it.

Anyway, that leads up to the good news. I was really expecting my diabetes to be so much worse, and I was expecting to have put on a lot of weight. So, I reluctantly went for my weight and diabetes check last week. After they recorded my weight, they told me that since last July, I've lost 20lbs! And my HBA1C blood test came back yesterday - it's not worse! In July it was 63, and as of yesterday, it was 62. Admittedly, it's not much progress, but considering I was expecting it to be a disaster, I feel pretty good.

Anyway - I'm sorry for this rant, I guess. I just needed to get it out. Thank you for getting this far, though. Have a great day!

#chronicillnesswarrior #chronichealth #ChronicPain #POTS #POTSUK #EhlersDanlosSyndrome #EDS #NAFLD #InterstitialCystitis #BladderPain #BPD #BorderlinePersonalityDisorder #Familydrama #Depression #PTSD #Migraines #Diabetes #diabetic #WeightLoss

Every year, I always set myself difficult NYRs that I never manage to fulfil for some reason or another. It's usually something like losing 35kg/80lbs off my weight within months, but I never do it.

So, this year I've set myself two relatively simple ones that I think I'll be able to achieve by the end of the year, as long as I keep reminding myself. Hell, I might write them on my white board that's in my room so I never forget.

Number one: To learn to accept and respect my limits with regards to my physical health.

Number two: To know my worth and never settle for anything less.

What ones have you set?

Happy New Year, my lovelies!

#chronicillnesswarrior #ChronicPain #POTS #posturalorthostatictachycardia #EDS #EhlersDanlos #NAFLD #InterstitialCystitis #BladderPain #Diabetes #Migraines #Depression #BPD #BorderlinePersonalityDisorder #newyearsresolution #nyr #Happynewyear #goals

Hey, everyone. I hope you’re doing as well as you can be, given the circumstances.

So, yeah, I’m scared. And very nervous.

I take 60mg Dihydrocodeine four times a day - I have been for about two years now. It’s the best painkiller I’ve been on (and I’ve been on a lot). However, sometimes when I have a bladder/urine infection, or a flare up of my Interstial Cystitis, I get pretty extreme cramps. Like my whole bladder locks out. And I often end up peeing myself a little because I can’t control it. Because of this, my GP and I made an agreement - she would prescribe me SIX diazepam tablets a month. No more, no less. Quite often, those diazepam tablets were a lifesaver. They allow me to leave the house without the fear of cramping and then wetting myself in public.

BUT… My GP has told me that she will no longer be prescribing me diazepam. She has said that new research has shown that in people who take opiates and diazepam there is a significant risk of respiratory failure.

I understand her reasoning… But I’m terrified. If I properly wet myself in public, I don’t think I’ll ever leave the house again. That diazepam greatly improves my quality of life. It allows me to perform daily activities without my bladder spasms getting in the way… And she’s taken it away from me… What do I do now?

Thank you for taking the time to read this.

.#ChronicPain #chronicillnesswarrior #BladderPain #BladderIssues #InterstitalCysltitis #Pain #PainKillers #scared #Worried