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

Me, Flu and You!

 

“There are in nature neither rewards nor punishments — there are consequences.” 
Robert G. Ingersoll

You might have noticed I’ve dropped off the face of the Earth these past few weeks.

There’s a reason for that.

I’ve just come face-to-face with a very nasty strain of influenza.

For most people flu is a mild illness that causes sore throat, runny nose, fever and chills which last several days. But for people like me who are immuno-compromised and for other high-risk categories such as the very young, the elderly and people suffering from chronic illness or underlying health conditions such as asthma and diabetes, influenza can be a very different illness.

If you’ve only recently arrived at my blog you might not know that I suffer from late-stage lyme disease, multi-organ and system compromise, and ongoing heart issues among other things. I’ve been to hell and back with my health and more than once in the past few decades the dark bird of death has sat companionably on my shoulder.

Still, I’m so much better now. These past few months I’ve been the strongest and most vital I have been in years. My improved health is the result of a great team, a regime, ongoing management and many, many hours of my life. Most of that hard work is invisible to the world. Instead what I hear is how great I look these days. Thanks. I’m working on it! 35 years worth of working on it, and counting…

When you don’t live in the world of chronic illness you might not realise that even when we look and feel well we usually have ongoing issues we are managing and our underlying immune systems may be weak. If our immune systems are in fact stronger than they have been it still only takes a few bad nights of limited sleep, of stress or of us overdoing our physical energetic limits for us to end up in a place where it is so much easier for us to succumb to infections. Sometimes we succumb anyway, even when we are healthy, because our immunity is just not as strong as other members of the community.

So that’s where Influenza A H3N2 (also known as Aussie Flu) and I collided a few weeks ago.

I’m hypervigilant when it comes to germs. I never touch my face, especially when we’re out. I wash my hands well, and always before eating. If I’m out I’ll use a hand sanitiser before eating and after using a shopping cart or touching any surfaces. On planes and in confined spaces I’ll wear a bamboo fabric mask impregnated with anti-bacterial and anti-microbial essential oils. I avoid people who are ill, and will avoid crowds and places that might put me at a higher risk of infection. I’ve managed to travel overseas, go to festivals and events and to holiday well several times, all without becoming ill and even as those around me have been sick – which I put down to me being vigilant and also having a great medical team caring for me from week to week.

So how did I get sick this time?

A client came to my home while she was recovering from having been very unwell. She didn’t disclose this to me and as she greeted me she coughed directly into my face. She was less than thirty centimetres away from me and her spittle covered my face and went into my eyes. She laughed, a little embarrassed, and wiped at my face with her hands. ‘Sorry, Love,’ she said, ‘just getting over the flu.’

My heart sank. But I tried to be hopeful that nothing would eventuate.

Less than twenty-four hours later I developed a sore throat. My glands came up in my neck, groin and armpits. Within a few hours I had a raging fever and could barely stand. I cancelled the rest of my week and put myself to bed, hoping that rest and an aggressive regime of herbs and Vitamin C might limit the damage and have me up again in a few days.

None of that helped. Overnight I deteriorated in a way that really scared me. I went from high fevers to chills and back to fevers again, was so weak I couldn’t sit upright, my throat inflamed and swollen so it felt like swallowing razor blades, my entire body ached, and I had a stabbing headache bad enough that I lost vision in my left eye. Eventually I could barely breathe, and my heart went into tachycardia. Add in chest pain and vomiting. Yep, awful!

I stayed like that for days, alternating between sleep and delirium. My doctors and cardiologist checked me out and decided I was better managed at home to avoid the risk of pneumonia and advised me to only come back to the hospital if my heart rate went to a certain level and stayed there over an extended time, or if my chest pain or breathing difficulties became too severe.

The last fortnight has been scary and hard, especially with all of the chest pain and arrhythmias. If I am honest I’ve also struggled psychologically with being so ill again after having felt on top of the world just a few weeks ago.

I’m through the worst of it now. A year ago this infection may have killed me (and yes, every day I give thanks for having such awesome doctors in my life, and my amazing local GP-acupuncturist and team whom I’m convinced are my secret weapon in the return to vitality from Lyme – thanks Dr Adam and Jodi!).

My symptoms are slowly easing, although my heart is still misbehaving. I currently look like I went one too many rounds in the boxing ring with a hefty opponent. And I’m earth-shatteringly exhausted. I have no energy for anything at all.

That’s how I know I’m still unwell. All I want to do is sleep. And that’s how I’ll know when I am better. I’ll be itching to get up and do something!

Meanwhile I have made a promise to Ben, my staff and my doctors that I will respect the flu and keep resting. I will not come back to full-on life too quickly. I will not overdo it and set myself back.

So, that’s where I’ve been. You know it’s never good news when I go quiet…

Think you might have the flu? Stay home and in bed if you can. Rest and keep up your fluid intake. Please, if you’re unwell spare a thought for others whose immune systems might not be as robust as yours. Practice good hand hygiene, cover your mouth when you cough, cover your nose when you sneeze, and don’t leave used tissues lying around. If you know someone who is pregnant, elderly, very young or who has a health issue avoid them while you’re unwell.  Seek medical advice or go to hospital if you spike and sustain a high fever, have trouble breathing or become breathless, if you have chest pain or severe abdominal pain, if you become dizzy or confused or if you have sudden severe vomiting. Not sick? Think about getting the flu vaccination, especially if you are in a high-risk category.

Thanks to everyone who has sent messages and checked up on me. I’m so grateful for your love and support. I promise I’ll be back on deck just as soon as I have my doctors’ blessings and enough energy to share with all of you as well as having enough for myself. Another week or two and I’m sure I’ll be just fine!

Biggest hugs and love, Nicole xx

On illness and being unreliable…

“I’m a very loyal and unreliable friend.” ~ Bono

One of the issues you need to deal with when you or a family member lives with chronic illness is your unreliability factor.

When I speak of chronic illness, I am talking about any condition that lasts for more than a few weeks, that doesn’t conform to a normal healing arc, or a condition that cycles into more active or less active phases.  The condition could be a physical affliction, a mental illness or a combination of these.  For whatever reason the presence of this thing in your life means that there is always a possibility that your plans, no matter what your intentions, may go awry.

Depression makes it impossible for you to get out the front door, irritable bowel means you don’t dare go to that intimate dinner party with the people you don’t know very well, a sudden infection or a flare up for you, your partner or your child and you’re back at the doctors, back on medication, back in bed…

Sick child - image from www.bloggingdad.com

Sick child – image from www.bloggingdad.com

Too often over the years, mine has been the empty chair at the dining table, the empty bed at the retreat, the face missing from the ‘family event’ photograph.

I don’t enjoy letting people down, or being unreliable, so over time I have accepted fewer invitations and my world has shrunk small.  Talk to anyone with a long term health issue and as much as they may seize the day, they often don’t know until they wake up whether the day will be a good one or not – so they become champions of winging it and making the best of those times when they feel strong, positive and with some charge in their battery.

One thing I have come to understand is that you need to have a few friends or family who know what’s going on, who are on your side, and who can cope with last minute invitations or cancellations.

Yesterday I was running on not much sleep, and it was in fact not the greatest of days.  But I had promised to meet a friend for breakfast. She has her health issues too. She understands.  We often text each other at the very last minute to cancel a meet-up, but we do everything we can to get there. We’ve also connected at very short notice, because both of us feel up to it, and why waste a moment?

I’ve caught up with Carly when she’s had an IV line hanging out of her neck, when I’ve been on my way to or home from hospital, and when both of us have felt very much less than glamorous.

Illness has taught me something important.  Friendship is more important that looking fantastic as you head out the front door. Connection is worth more than self doubt. And laughing and being with people you care about, and who care about you, is the very best of medicine.

2013-05-05 09.19.05

Today, both of us are heading back to doctors to have scans and more medical appointments.  Both of us have heads full of wondering what’s going on ‘inside’.

And both of us are unreliable. Not because we want to be.  Not because we are casual about commitment, or how much we care about you.

We are unreliable because our bodies run their own agendas, and we really have no idea how things might look from day to day.

We’ve learned that the cost of ‘making the effort’ to engage can sometimes be too high, and we’ll keep paying for days…

If you’re in the Unreliable Club, I’m sending you lots of love, and I want to remind you that it’s worth trying to make that connection, but that the bottom line is you ALWAYS need to honour your body, and your intuition around situations and relationships.

If you are friends or family of someone with a chronic health issue, I ask that you keep loving them, keep reaching out, and do your best to make sure they don’t end up alone and socially isolated.

One of the greatest tragedies of chronic illness is that so many people end up alone, with no support network. And when we have no one to care about us, and life is so hard, some people give up altogether.

Life is fragile, and we are all vulnerable. Let’s do our best to look after each other, to stay connected, and to live life the best we can with every breath.

friendship-quotes-The-sincere-friends-quotes

Not knowing…

Image from www.colourfully.eu

Image from www.colorfully.eu

“Waiting is painful. Forgetting is painful. But not knowing which to do is the worse kind of suffering.”~ Paulo Coelho

Is it better to know or not know?

It’s a question I’ve asked myself so many times that I can no longer trust the answer.

I am dancing a slow dance with something that is robbing me of my life, in pieces so tiny and inconsequential that it seems, some days, like it’s all in my imagination.

Constantly I adjust my gaze.  Shift to a new paradigm of normal. And each time my world diminishes a little bit more.

When my gaze is recentered I look for the positive, the uplifting, the beautiful.

At times, I’m Blessed with expansion. Or sometimes I force it and pay the price later. But isn’t that what life is for?  For living?

I try not to look beyond the boundaries of my shrunken world.  To do that is to long for a life I can’t have right now. Possibilities and choices left far behind.  I’ve seen what that does to people.  It fills them with bitterness and regret. It sucks the goodness out of what remains.

We, all of us, live with diminishment, doors closed, things ended, storms that come and wash it all away.

And if it wasn’t for this unknown thing, I never would have explored this rich inner world, and the worlds beyond that. I think that’s a fair trade-off.

It’s still a beautiful life. It’s still good here in my little corner, even as the storms pass over.  The trick is learning to dance in the rain, while I wait for the sun to come out again…