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Cerebral Palsy and Aging

I'm 2 days past my first round of Botox for muscle spacisity due to Cerebral Palsy. As a child I was considered mild type 1 Cerebral Palsy but with aging I've been rediagnosed as type 3 moderate. These changes mean additional interventions such as braces and Botox injections to keep pain low and reduce complications like my arm freezing into positions that are unmanageable. Looking for others who've used Botox and hoping for some encouragement! #CerebralPalsy #HipDysplasia #BladderIncontinence #Disability

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This is a question for anybody that has urinary issues… This might be a bit TMI so I’ll explain it all below in the main body of text.

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

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'Shocking' lack of evidence on antidepressants for chronic pain'- New article from the BBC on a new review of previous studies on the topic

Kind of an inflammatory headline in my opinion 😅

As it could be read as: 'stop taking #antidepressants immediately as they don't help chronic pain AT ALL'.

When rather the review is suggesting:

A) Antidepressants have been prescribed for chronic pain for years and STILL there seems to be no clear or concrete understanding into how they help the pain of chronic pain sufferers.

B) Confusion into whether antidepressants do help the pain aspect of chronic pain.

C) As many suffers have [very unstandably] mental health issues they could be helping that. Making pain management easier 🤔

C) Which antidepressants is concretely better for chronic pain.

Article found here:
'Shocking' lack of evidence on antidepressants for chronic pain

Another wonderful day for chronic pain sufferers🙃

I joke.

It is better to have this awareness and recognition that ultimately MORE RESEARCH, DONE MUCH LONGER is urgently needed.

However, I do feel like articles like this arm those who are very anti-antidepressants. The NHS is definitely trying to move away from prescribing medication in general for chronic pain sufferers.

(In my opinion) though I believe this is more a money saving move than a research influenced change of course. As soon as I see CBT as an alternative I feel vindicated 😆

For those who aren't aware the NHS (largely to save money) prescribes CBT for literally EVERYTHING nowadays 🥲😔

#ChronicPain #Fibromyalgia #ChronicFatigue #Depression #Anxiety #MentalHealth #IrritableBowelSyndromeIBS #CBT #Agoraphobia #AgoraphobiaWithoutHistoryOfPanicDisorder #FunctionalNeurologicalDisorder #BackPain #Jointpain #AuditoryProcessingDisorder #BladderIncontinence #InterstitialCystitis #Insomnia #Asthma #Prediabetic #HearingLoss #hippain #dissociation #NHS #Nice

'Shocking' lack of evidence on antidepressants for chronic pain

Hundreds of thousands are prescribed medication without enough scientific proof it helps, UK experts say.
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Thank goodness its bed time ..... #MentalHealth #CheckInWithMe #Anxiety #Depression #Selfcare

So after being absolutely demented being on bed rest I thought il just go over myself and get kids from school !!BAD MOVE!!! I knew I was really sore and struggling and still been retaining!then as I leaned over and opened gate to come in I felt the instant pain !I'd had my catheter and tube tied and clipped onto strap on my leg and forgot I couldn't bend really and tried it and it pulled the catheter right out !!so as you can imagine I was screaming !!had to then wait 6 hours for district nurse to come out and put new catheter in ,and plus the fact I was retaining a further 6 hours my bladder was full and putting pressure on my back which caused so much pain !!then once nurses came it took them 3 times to attempt and eventually get one back in and fixed properly so right now I think I'll keep my bright ideas of thinking I can go walks to a bare minimum 😂😂😂🙈🙈

Honestly my neighbours must have been like what is going on ,me there with my crutches ,opening gate then screaming and waddling into the house !!! So glad it's bed time now & let's hope for a better day tomorrow 🙈😂if I don't laugh right now I think I'd be crying permanently.

#MentalHealth #CheckInWithMe #Anxiety #Depression #InterstitialCystitis #BladderIncontinence #Catheter #loveyourself #Selfcare #PTSD #Positivity #wellness #Bekind #LaughingAtMyNightmare #AloneTogether

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Feeling defeated Incontinence strikes again! #CerebralPalsy #OAB #BladderIncontinence #Depression

Man these last 6 months my incontinence accidents have really amped up

(SO #depressed )

I HAVE DEALTH WITH ACCIDENTS AT LEAST ONCE A DAY MY ENTIRE LIFE...have been using disposable underwear 20 yrs. NEVEVR have I wet through the all untill July!

I started wetting though.... NEW: without the sensation to go! SO MY Clothes(MY WHEELCHAIR SEAT STAYS WET because of wear damage is to exposed cushion & wood) & floors are now getting soaked..

SO TIRED & defeated I struggle to even bother bathing--WHY? WET SEAT GETS clean clothes wet anyway! SIGH!

So Jan 9th, I started taking the Better Bladder supplement...

I'll be taking 3 weeks this coming Monday.

At week 2 I noticed I had 5 hrs between bathroom visits HOPE is helping...

UNTILL last night. I went 4 x barely holing it.

THEN this morning ---I WET THROUGH

DOES ANYBODY TAKE BETTER BLADDER supplement? How was your experience? Is this common while getting to the 8 wks for best results mark?

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Following on from yesterday's post of not being ashamed, here are the aids I use to help me through everyday life.

These aids give me better quality of life and there is nothing wrong with needing them.

Not feel guilty for using something that makes your life just that little bit easier.

#MobilityAids #FunctionalNeurologicalDisorder #ChronicPain #ChronicIllness #BladderIncontinence #urinary retention #Endometriosis

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This Bed, Incontinence, and Fat Me

This motel bed is worn out from my fat body and the limited space I have on it. I sit up on the bed, and my abdomen sits over my legs, and it causes my right thigh a lot of discomfort. I can't find a position that works except leaning back and to the left, but then I have my phone too close to my eyes (and most positions I sit in, I fall into leaning forward, so the phone's too close to my eyes even then. Leaning back doesn't always help, either.

The bed I'd sunk in, and the times I've wet the bed (yes, I use bed pads, but when I've emptied my full bladder, it's not enough, plus my boyfriend only gets the cheapest bed pads and underwear, and they don't even carry my size in any brand in the stores.

Yes, I *am* trying to lose weight, but I'm limited as to what I can eat, and when I stay at the motel instead of going out, like I did today (because I'm sick), I have to rely on what my boyfriend's willing to get me. I only eat one meal a day, and a bag of chocolates as a snack. It's terrible, I know, but it's hard to find healthy snacks you don't have to refrigerate, especially if you crave sweets.

I'm getting drowsy again, so I'm going to stop here.

#Anxiety
#ocd
#obsessivecompulsivedisorder
#Depression
#panicdisorder
#hoarder
#hoarding
#ptsd
#cptsd
#disability
#abuse
#emotionalabuse
#mentalabuse
#Financialabuse
#Obesity
#BladderIncontinence
#Incontinence
#UrinaryIncontinence
#urge incontinence
#bedwetting
#overactive bladder

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Feeling shocked by next step with urological stuff 🤯😳🥺

So I had an appointment today with the Bladder & Bowel team (first face to face appointment in around 5 years…!) as I’ve been getting worse bladder symptoms that, now I have the formal diagnosis of hEDS, I wanted to push to get actually investigated and not just assumed as linked to my back injury or severe B12 deficiency nerve damage… she wasn’t initially keen to refer me to Urology, but has now said that she will speak to her colleague tomorrow at the other hospital and see if they can suggest anything they can do in terms of investigations or if we just continue with the next stage of the plan with this team (that is happening regardless). This next bit is the one that has left me fully shocked as she has referred me to a nurse specialist to learn how to carry out intermittent self catheterisation (ISC) in the hopes that it resolves the urgency incontinence, frequent UTI’s and urinary retention issues I get. I don’t know of anyone who has ever done anything like this to themselves and so it has sent my anxiety through the roof, leaving my IBS playing up and a splitting headache. Not helpful as we have a heatwave again in the UK 🥺. Has anyone here had positive experiences with ISC that you are willing to share? Normally I’d ask for all experiences but right now I’m really scared and anxious so am asking that negative ones are not shared, just to allow me time to calm these feelings before I get the bigger picture - I have previously refused/delayed treatment after hearing negative experiences and ended up needing emergency hospital admission and far more invasive treatment to get me well (ish!) again. Thanks in advance! 🦓🦓🦓 #HEDS #EhlersDanlosSyndrome #ChronicIllnessEDS #ChronicPain #BladderIncontinence #BladderIssues

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Anyone with Interstitial cystitis, what did it take for you to be finally diagnosed?

Anyone with Interstitial cystitis, what did it take for you to be finally diagnosed?

Had 6 courses of antibiotics, the current course is meant to last for 3 months.

Been a couple of weeks, but still dealing with: incontinence, taking ages to pee, intense and debilitating bladder pain... Exhaustion

My body is knackered and I really don't feel like the antibiotics are helping 😭

...and if I have to drink another cup of cranberry juice I'm going to hurt someone lol.

The Urologist discharged me with the latest batch of antibiotics and a quick fat shame (thanks doc 🙃).

Terrified about being fired from my job and failing my uni course 🙁

#InterstitialCystitis #BladderIncontinence #Overactive bladder #ChronicPain #Fibromyalgia #ChronicFatigue #AuditoryProcessingDisorder #Depression #Anxiety #IrritableBowelSyndromeIBS

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Generic vs. Name brand

Hi everyone,
Does anyone else think generic pads for bladder issues are better than name brand?
#BladderIncontinence

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