I’m Not Ashamed

“If we can share our story with someone who responds with empathy and understanding, shame can’t survive.” 
~ Brené Brown

‘Oh, Nicole!’ That’s how the email started.

‘Darling friend, I’m so sorry to hear you are still battling Lyme disease. I hope you’re on the mend soon. Just wanted to give you some advice. What you write stays on the internet forever unless you decide to remove it, and even then it may be too late. So why on earth did you write about having incontinence? Nic, pull it down as soon as you can. That kind of stuff is so damaging for your image, and if you ever get a publishing deal you’ll regret this kind of over-sharing. Trust me.’

Hmmm….

Over-sharing? I don’t think so. Damaging? Some people will judge me, for sure. But they are not my people. You, dear readers, are my people.

Here’s what I know about my tribe, and about life in general.

Shit happens. Terrible, awful things can happen to good people for no reason. Life-changing accidents can happen in the blink of an eye. Wear and tear, illness and calamity can render the most sound of bodies and minds suddenly limpy, broken or cobbled together with tape, string, tears, stubbornness and fervent prayers. Many illnesses and incapacities are invisible. People live with all kinds of pains, traumas and problems that most people around them will never even guess at.

Right now I am suffering from neurological incontinence. Inflammation in my brain and nerves makes a signal go haywire and sends a message to my bladder instructing it to void. Which it does with no permission from me. One minute I have a full bladder, the next minute my bladder is emptying wherever I happen to be and no matter what I am wearing, doing or what my plans might be. It’s happened to me dozens of times over the years since I first began treatment for Lyme, and my solution is adult diapers. Which mostly work, and sometimes don’t.

People can suffer from neurological incontinence as a side effect of MS, advanced Lyme disease, brain or spinal cord injury, brain lesions, degenerative brain diseases, or the long term effects of radiation or cancer treatment, alcoholism or diabetes. It affects men and women, children through to people in old age. It affects me.

One day it may affect you or someone you love.

Few of us get a free pass through life with no adverse side-effects! My dear friend Carly-Jay and I often have a laugh over the bits of our bodies or bodily functions that fail us. We belong to a club of people who live well despite how our bodies sometimes misfunction or misbehave. We call that club the Unreliable Club and I’m sure some of you are already card-carrying members. (Maybe we need t-shirts!)

When I was first diagnosed with neurological incontinence (which comes and goes in me – I last had an attack a few years ago!) I looked everywhere for information and found almost none. It’s something no-one talks about.

So, I’m talking about it here. It’s not the end of the world. It can be managed. And it’s nothing to be ashamed of.

It’s just wee. Everyone does it. Every single day. It’s a normal part of life, and for some people it’s a part of life that doesn’t work well for any number of reasons. If more people talked openly about this kind of thing we’d realise just how prevalent these kinds of issues are AND THEY ARE NOTHING FOR WHICH YOU NEED EVER FEEL SHAME.

The Continence Foundation of Australia offers the following statistics:

  • Urinary incontinence affects up to 13% of Australian men and up to 37% of Australian women (Australian Institute of Health and Welfare report, 2006).
  • 65% of women and 30% of men sitting in a GP waiting room report some type of urinary incontinence, yet only 31% of these people report having sought help from a health professional (Byles & Chiarelli, 2003: Help seeking for urinary incontinence: a survey of those attending GP waiting rooms, Australian and New Zealand Continence Journal).
  • 70% of people with urinary leakage do not seek advice and treatment for their problem (Millard, 1998: The prevalence of urinary incontinence in Australia, Australian and New Zealand Continence Journal).
  • An Australian study found that over a three month period, 50% of women aged 45-59 years of age experienced some degree of mild, moderate or severe urinary incontinence (Millard, 1998: The prevalence of urinary incontinence in Australia, Australian and New Zealand Continence Journal). 
  • The prevalence of urge incontinence, which is strongly associated with prostate disease, is fairly low in younger males and increases to 30% for those aged 70-84 and 50% for those 85 years and over (Australian Institute of Health and Welfare report, 2006).

It’s wee. It’s not working in a very controlled manner in me just now. That’s okay. I have bigger stuff to think about. This is just small stuff, not worth sweating over.

If you feel the need to unfollow me, unfriend me or avoid me because of my bladder control issues and embarrassing habit of oversharing then go right ahead. I’ll still be here for you when life gets bumpy. And then I’ll remind you that you can still live the dream while rocking adult diapers and I won’t love you any less for it. Instead, I’ll be cheering you on!

Much love, Nicole xx

We Need To Talk Wee

Photo by Nancy Rubin

Photo by Nancy Rubin

“Shame is a soul eating emotion.”
~ C.G. Jung

“We learn humility through accepting humiliations cheerfully.”
~ Mother Teresa

 

A few years ago I wrote a blog post about vomiting in public places. It was quite controversial. Many people thought that talking about vomit was something one shouldn’t do in polite company.

Nice girls don’t talk about vomit.

Nice girls don’t vomit in public places.

But the fact is, all of us, at one time or another – have been ill. Have been unable to control what was happening inside us, or what came out.

Why is it then, that there is such shame about our bodies and their functions? We all have bodies. We all breathe, ingest, expel.

Cars break down. Waist-band elastic gives up. Jumpers stretch. Buckets spring leaks. Computers fail. Things age or get broken and lose functionality. Why not humans?

Image by kataang6201

Image by kataang6201

I’ve recently been undertaking a new drug regime for one of the co-infections that are common with lyme disease. Over thirty years, lyme has given me an abundance of shameful and humiliating moments, symptoms and afflictions. This current treatment is working well, but it has also had some very uncomfortable side effects.

It’s usual to herx when you’re killing bacteria. As they die the bacteria release toxins into the body, causing a herxheimer response. Inflammation and toxins can cause headaches, gastro upsets, pain, rashes, fevers and fatigue, among other things. I’ve become quite the pro at managing herxes, and also my medication dosage rates so that I don’t herx too aggressively – which can become a dangerous thing.

This time, while on old-school IV anti-malarials two things have happened. Firstly, early on, I began to slur my words and sound like a drunk. This has happened before. It was intermittent, but annoying and then it stopped after a few weeks. Luckily I was mostly at home in my pyjamas, so it was quite a manageable thing.

The second thing caught me by surprise, while I was at my doctor’s rooms not long after beginning my first treatment. I was standing, talking to my doctor, feeling quite good, when they said to me, “Ah, Nicole, you’ve just wet yourself.”

Yep. We need to talk about wee…

I looked down and sure enough I was drenched in urine. It had soaked my jeans, and was running into my boots as well as puddling on the floor. My dear doctor, who had been planning a gym visit later that day, lent me a pair of dry tracksuit pants and I hightailed it out of there, feeling quietly humiliated although the doctor had been nothing but kind and supportive. I mean, what grown-up non-comatose-drunk adult pees their pants for no good reason?

I convinced myself it was a response to having sat at the end of an IV drip for the previous hour. But the next day I was standing at the clothesline, hanging out some sheets and it happened again. A stream of wee running down my legs, when I’d had no warning. No urges. Nothing.

Suddenly I found myself in a situation where I had no control over my bladder.

Welcome to the world of neurological-induced incontinence.

When I mentioned that I was going to blog about wee yesterday, women in the know nodded their heads. For some women a sneeze, a laugh, a cough, vigorous exercise and a little wee just squeezes out. Urinary incontinence is common in women during pregnancy and after childbirth. It can also be triggered by a prolapse, fibroids or endometriosis, and menopause.

Prostate issues and prostate cancer or the side effects of prostate treatment is a major cause of incontinence in men. Medications, injury, nerve damage, asthma, obesity, diabetes, arthritis, Parkinsons, MS, dementia, lyme and other chronic illness can create incontinence issues. Head injuries are a common contributing factor.

Anyone can be affected. And it’s something no-one talks about.

For some people urinary incontinence is a feeling of urgency, or a little leakage. For me it has been full-blown uncontrollable complete emptying of my bladder.

I used to laugh at the Tena Lady ads on television. I’d make jokes about Depends undergarments. But suddenly I needed to use them.

 

My incontinence wasn’t caused by pelvic floor weakness or infection – my problem stemmed from the brain. I’ve suffered bouts of neurological incontinence before. It has been infrequent, and usually when I’ve been very, very ill. It has sometimes been triggered by antibiotic use (which induces herxes). Sometimes it has been triggered by the bacteria themselves as they have taken up residency in my brain. Each time it has been embarrassing, limiting and sometimes downright humiliating.

This time my incontinence has been prolonged rather than an occasional random incident. Almost two months of almost daily ‘accidents’ – a flood that could not be held or managed by a Tena Lady discrete incontinence pad.

No, in the end I’ve needed adult diapers – the equivalent of big-girl pull-ups. I really wanted to believe that I wouldn’t need them. That somehow it was a passing phase, and I’d regain control. But after I wee-ed on every single pair of pyjama pants and tracksuit bottoms in a single day, relegating my entire comfy clothes wardrobe to the wash, I capitulated.

I googled adult incontinence devices. How reassured I was to see these magical underpants absorb whole cupfuls of gaudy pink liquid. How disquietened I was to think that I might need plastic undersheets and an epic amount of odour mitigation.

This wasn’t how I’d wanted my life to be. (Please don’t tell me shit happens – that’s a whole other blog I am equally qualified to write!)

Image by Corey Wilson

Image by Corey Wilson

At first I was too embarrassed to leave the house. Too embarrassed to have friends over. I was worried I stank of wee. I was worried I’d have an accident and wee in public.

After I got my big-girl pull-ups I was so self-conscious. I was sure you’d be able to notice them under my clothes.

And what if they leaked?

Babies wear nappies, and babies have epic leaks. Ask any parent. Any nurse. Any childcare worker. Or get brave and ask any aged-care worker, like I did. Yep, adult nappies can leak too.

Cue all of that insecurity I first experienced wearing a menstrual pad.

I thought about not drinking water before I had to go anywhere, but water was an important part of my detox routine to manage the herxes. It was a no-win situation.

So in the end I decided to accept that for now, normal meant wearing my big-girl pull-ups. I packed extra pull-ups and extra clean underwear and pants in my bag, and I got on with my life.

I am now a mother to myself. There is no way I’d let myself sit in a cold wet diaper for hours. Unlike many people with illness, disability or frailty I’m blessed with the ability to change and look after myself.

For the most part, it’s actually been okay. And I’ve been sharing what’s happening with me, as much as it has sometimes caused embarrassment or discomfort in others.

As this round of medication ends the incontinence issue should subside. But for me this whole wee thing has been a huge learning curve, including one of supreme self acceptance.

I don’t think these simple human issues should be given the silent treatment. I never thought incontinence would happen to me (certainly not while I am still young), and now it has I find that it also affects so many other people or their family or friends. Perhaps I wouldn’t initially have been so cripplingly shamed and worried if we were all more open about this.

If you suffer from urinary incontinence go have a chat with your family doctor. There is so much that can be done to rectify, cure or manage your situation.

The Continence Foundation of Australia is also a great place to find out more.

We’re human. We poo, we wee, we vomit, we leak. We have bodies that will work well one day, and not so well the next. It’s part of life.

Image from pinterest

Image from pinterest