Rachel: A wee problem. Dysautonomia Awareness Month.

Today's guest post comes from Rachel, another New Zealander and all round top chick. When I was packing my dacks about my upcoming pacemaker surgery in July, Rachel was one of the lovely people who reached out to me, to both slap me round and pat my hand to tell me it'd all be okay. She didn't make me feel like a loon for my hysterics and also kept cracking me up with those laughs that can only be shared by those who've been there. Plus her frequent use of the word 'shenanigans' makes me love her even more. Having been known to utter the phrase, "it was a 'Poise-worthy' moment" this post is definitely one that had me nodding along.

Rachel Age 39, married, 2 kids, 1 cat. teacher in a previous life. Became very ill in 2008 after a bad virus, but I had symptoms of Dysautonomia as early as age 8. Diagnosed with POTS, fitted with a rate drop pacemaker, then when other parts of my ANS went wrong the Neurologist changed my diagnosis to Pandysautonomia. cause as yet unknown.

One of the joys of dysautonomia for me, has been the wee problem of pee.

Among other things, the autonomic nervous system is responsible for bladder control.  Sometimes, I retain urine.  Some times I can't keep it in!  I wanted to write about this because it is something people are reluctant to talk about. It makes me cringe thinking that I'm standing on a cyber platform telling you all about my wees.  But since we're sharing...

This first became a problem for me around two years ago.  I went to see my GP for what I thought was (refreshingly) an unrelated-to-dysautonomia issue.  I needed to pee all the time.  The urgency was overwhelming, not to mention irritating.  I would go to the toilet and pee over twenty times a day, sometimes, I didn't make it in time.  It was hard work, as all that getting up and down isn't so easy when you have posturally induced dizziness.  My GP said I had a UTI.  Said it was common to have frequency without the other symptoms and prescribed me antibiotics.  I returned five times and was put on a new course of antibiotics each time.  Each time my urine sample failed to grow any bacteria and the issues didn't go away.

Eventually, I had to tearfully explain to my husband that I was wetting my pants, often.  I felt so ashamed, and so upset that I needed incontinence garments every day, and for bed, in my thirties.  It’s not very sexy.  I thought  that despite my Olympic-standard pelvic floor efforts, I must have been doing something wrong..  We made an appointment to see a urologist.  He ran some tests. 

It seems there is something more embarrassing than peeing your pants.  That's having to pee in front of perfect strangers while they measure your bladder function.  The results showed that my bladder muscle, the detrusor, wasn't receiving the correct messages at the correct time to function normally.   I was put on a medication called solifinacen succinate.  Old fellas go on it when their prostrate stuffs up.  It is a selective medication that helps me to go less often.  I am so thankful for it.  This is the only med I take on an as-needs basis.  That's because my bladder likes to keep me guessing.   

Not long after the festival of golden showers, my bladder went into reverse.  Instead of peeing constantly, I couldn't pee at all.  I ended up in hospital with a catheter and bag.  It became clear that my bladder wasn't just receiving the correct messages at the correct time, but sometimes wasn't receiving them at all.  Once I was home, a district nurse came to teach me how to self catheterise.  The home nursing service pamphlet had a rudimentary diagram of the nether-lands (just quietly, I don't think my hoo-hoo comes from the same place).  Suffice to say, having an iPad and google images in the loo, is a useful medical aide. I am inordinately proud that I can empty my bladder by tube.  It's a massive achievement and gives me the independence I need when retention threatens to send me back to hospital.  Every time, I feel the sort of pride my toddler son felt when he achieved a wee on the big loo.  I can stand and pee, too! But sadly, it's not really the sort of thing you get a sticker chart and a lollipop for.

So.  To pee or not to pee.  That is the question.  The answer, my friends, is to find methods for managing that let you keep the big girl nappies to a minimum and your pride intact.  Here's to my wee pills and my wee tubes.  And my wee bit of courage to tell you all about my wees.

Rachel

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For those unfamiliar, a short explanation of Dysautonomia can be found here.

One of the most famous people with a form of Dysautonomia is former Yellow Wiggle, Greg Page, who lent his name to a research fund at The Baker IDI, here in Melbourne, Australia. Donations can be made at The Greg Page fund For Orthostatic Intolerance.

Information about one of the current research projects under way in Australia at The Baker IDI, can be found here.

Don't forget to check out the other awesome guest posts:
1. Claire: The ups and downs on the journey to diagnosis.
2. Amity: Art from the heart.
3. Claire: Finding your personal treatment regime. A spoonful of this and a teaspoon of that.
4. Belinda: Coming out.
5. Damon: The husband's tale.

Nice choice for a musical accompaniment by Rachel.