Goat Suckers, Horse Kissers, and Pig Ticklers AKA Just Another Day in Chronic Illness.

(White-winged Nightjar, Eleothreptus candicans, source)

"What is another name for a Nightjar?" asks the host on the UK quiz show blasting from the wall of the radiology office.

Goat Sucker, Horse Kisser, and Pig Tickler, are the options offered up to the elderly contestant. Her floral dress, spectacles and hair set would not have seen her out of place in an episode of Keeping Up Appearances.

Is a Nightjar where you keep your Night Soil? A look of panic emerged on the face of Hyacinth's neighbour. Apparently not. While visions of old chamber pots ran through my head I learnt that a Nightjar is also known as a Goat Sucker and that none of the options were a euphemism for some sexual contortion. It's a bird if you're interested. No joint poo receptical or Karma Sutra involved. Too much time in gastroenterology offices means I have poo on the brain. Living with a juvenile husband also means euphemisms pop into my mind by default.

TV in waiting rooms tends to be dull, so a low budget British quiz show, hosted by the guy from Law & Order UK, was welcomed. Although I should add a disclaimer. I was slightly delirious from walking/stumbling ten thousand kilometres to the door of the radiology office, which despite the sign is not near the obvious carpark. Instead it's down a long walkway around a couple of corners and at the back of the building, where there is another hidden carpark. So really, a mind numbingly boring episode of Law TV from one of the infomercial channels may have been deemed exciting by that point. Hell, I may have even enthusiastically paid $5.45 a minute, for a reading from Psychic TV, by the time I finally wheezed that I was there for  my 3:45 ultrasound.

A woman who would not have looked out of place as a screw in an episode of Prisoner, sat at the top of ramp, a series of light panels in front. As she smugly regaled the serfs/contestants below with her knowledge of monotremes and spiny anteaters, I mumble that she shouldn't be so smug if she doesn't mention they are actually known as echidnas. But she can't hear me, and the woman two seats down who can, looks like she'd rather move further away from the strange wheezing woman talking to the TV.

Tap tap tap. Tap my foot and squirm in my seat while a guy with a magnificent mullet answers another question. Drink one litre of fluids before the scan, she said. Don't pee after two, she said. Damn it's not a mullet after all, just really long hair pulled back at the top. You'll always be Mullet Man to me UK quiz show contestant. Because I need to focus on a non-existent mullet to stop thinking about the litre of water I have consumed to have a full bladder ready to squish and scan.

Tap tap tap. Call me now please or you'll have one litre of water on your ugly brown and black carpet squares.

Governess Merciless. Oh this just gets better. The screw at the top of the ramp is a wrestler. There a mention of red latex. Oh British TV, I think I love you.

Hold the water, even when you're there for abnormally frequent peeing. Hold it in. Hold it in. Luckily I threw up some of the litre so it's not quite so bad. Well from a pee on the carpet perspective, not so much from a watery spew as you hold onto the side of the porcelain at home perspective. But I have topped up since so who knows how much is in there.

Come on people. Scan me. Let me pee or puke. A gross choose your own adventure. It's coming out somewhere. Once upon a time I could drink water without wanting to puke. I could also eat without wanting to puke. And not worry about peeing in a waiting room. Or at least I think so. My memory is pretty hazy these days.

Here we go. Maybe. No? The other guy left. There's only me now. Please hurry. Tap tap tap. Squirm. Rearrange. Wait. Watch Mullet Man and wrestling screw in their battle of wits.

3:45 comes and goes.

Tick tick tick. The clock behind the admin desk measures the increasing sensations in my nether regions with each nerve rending tick. Tick tick tick could become drip drip drip any second.

Wait? What? It's my turn? Okay.

Stumble down the corridor and into the mood lit room. Lie on the table while a stranger rubs KY on my stomach and scans my bladder. He hesitates.

There's only 40mls in there. What? No that's not possible. I drank it all. I feel like I need to go.  I topped up after my spew. Where has it gone? What? I have to drink more? More waiting? Just 40 minutes more. At the sight of my crestfallen face, he repeats the just. Like that makes it better.

Back in the waiting room and more UK quiz show. Less excitement and interest this time as I am handed more cups of water to drink and wait. Wait wait wait. Pull a magazine out of my bag and read.

Kegal, kegal, kegal. Squirm and read. Read and re-read as each pang in my bladder says I need to pee. More water. Wait. Can't concentrate now. Did you know that a decrease in cognitive ability has been recorded in people who really need to pee? People study these things. When you are busting to pee, your brain turns to mush. Add that to pre-existing brainfog, and I may have been the intellectual equivalent of a rock, sitting on the orange chair staring and mouth breathing at the magazine in my lap.

The admin lady is packing up. People are leaving. Come on. Scan me. Scan me. Tap. Tap. Tap. Squirm. Squirm. Squirm. Kegal. Kegal. Kegal.

Finally. 3 hours since I last peed I am scanned again. 80 fricken mls.

My body is the Tardis. And somewhere in the endless interior of my body, is a well of water. Sitting, waiting, refusing to budge. And yet I still need to pee.

I wall walk out to the waiting room once more. The UK quiz show is over. I pay for the pleasure and wait for my disc. Maybe if I asked Governess Merciless to order the water to stop loitering in my stomach, or behind my pancreas, or near my patella, or wherever it's hiding, it would move to my bladder quick smart.

After 3 hours I make my way back down the concrete and wooden corridor to the car, contemplating the fact I can't even get a scan right.

But at least I have learnt something new thanks to Hyacynth Bouquet's neighbour, Mullet Man and Governess Merciless.  Night Jars are Goat Suckers and as Wikipedia tells me Goat Suckers are Chupracabras. And last night I watched an episode of Grimm about Chupracabras. Life comes full circle. And just like that, all that water finally found it's way out at 5am this morning.

Michelle

And because I'm pretty sure my bladder and body are telling me they don't care what I want, I give you Transvision Vamp and Baby I Don't Care (1989).

TMI

(source)

TMI (Too Much Information) I see that written everywhere over support forums. Usually there's an apology stuck in there too.

Sorry, TMI post ahead. Please remove admin if not okay.

I've done it myself on more than one occasion. But each time a small part of me thinks, I wish I could just ask the damn question without feeling like I have to apologise.

You see, every time there is a TMI post it is always followed with comments like,

OMG, me too!

I thought I was the only one.

Thank you so much for posting.

Every time.

I've had the same reaction here on the blog, Whether I've posted about my bowels, or my hysterectomy, I am always flooded with thank you emails and messages. Though I wish people would post here on the blog, or over on FB, I understand their reluctance. So much of what is in truth, just a normal part of illness is wrapped up in layers of stigma.

You don't speak about those things.

Disorders like Dysautonomia come with a whole host of less savoury and often confronting symptoms. The Autonomic Nervous System runs throughout the body controlling multiple systems. And yet even most of our doctors speak only to a select number of symptoms, most commonly blood pressure and heart rate.

When was the last time your doctor asked you about your sex life? The literature is quick to point out impotence as a potential for men, but we women rarely get a mention. In truth, even for men apart from the impotence issue, little else is discussed in relation to sex. Yet whether physiologically, emotionally, or both, our sex lives can be impacted by Dysautonomia. A recent closed session from Dysautonomia International with noted neurologist and Dysautonomia specialist Dr Svetlana Blitshteyn (Sexual Health and Pregnancy in Autonomic Disorders), revealed a wide range of sexual, gynaecological and reproductive concerns. For many it was the first time these issues had been addressed let alone acknowledged. Dr Blitshteyn was able to provide answers to multiple physiological questions in these areas, clearing up myths, pointing out continuing holes in our knowledge and allaying fears for many. I have been ill for 8 years, yet this is the first time I've seen this subject addressed so directly. And the response from patients was overwhelmingly positive and grateful.

This of course doesn't include the emotional aspects of intimacy. When nausea and other symptoms get in the way of sex. Or the way we respond male or female, to body image, and the changes that can occur thanks to medication effects. For many of our doctors it would seem that as chronically ill or disabled patients we are supposedly asexual beings. Yet intimacy is an ongoing issue discussed in many forums by patients at a loss as to how to maintain it in a relationship.

Bladder and bowel issues are also highly common in the Dysautonomia community. Diarrhea, constipation, dumping syndrome, urinary frequency and urinary retention, and issues relating to continence abound. Yet again these are so rarely discussed by our doctors that patients feel there is something wrong with them when they occur. Without fail, every time I have brought up my own bowel issues here on the blog I am inundated with emails, the same for urinary issues. There are patients living with devastating continence issues who are embarrassed to discuss the issues with anyone, let alone a doctor. Yet there is help available and organisations such as The Continence Foundation of Australia who can help.

I had a little hissy fit over on FB recently about the LBL campaign from Poise, which exemplifies the problems we face.

Maybe I'm tired and grumpy today, but I get irritated with the Poise LBL ads. Are we so afraid to talk about bladders and incontinence, that we have to create an acronym to cover up what is being discussed? Women don't seek help because they are embarrassed, and yet there are organisations like Continence Foundation of Australia which can point women in the right direction to find help. There are specialised programs and specialised physiotherapists. Urinary incontinence is amazingly common, especially following childbirth, and can occur in certain patients with autonomic issues, and there are solutions, but people feel alone because it is not openly discussed. We don't need to shy away from the words 'bladder' or 'incontinence' as if there is something shameful about them. We need to be able to discuss these things, go to our doctors and find our individual solutions. Part of that is using real words and treating it as any other health issue. Take away the taboo and stigma through openness!

And given the numerous response's underneath I am not alone in a wish to destigmatise this issue.

For the most part Dysautonomia patients will be under the care of a neurologist or cardiologist. Embarrassment aside, it is not instinctive for patients to ask these specialisations about their continence or sexual issues. The emphasis is on heart rate and blood pressure, and many other symptoms simply remain undiscussed and in turn unknown. Many will need their doctor to raise the issue. Yet time and again this is not occurring. If our doctors are ignoring or uncomfortable asking about these aspects of our disorder, why would we patients feel comfortable discussing them? How do we even know to ask?

Not every patient will experience sexual or continence type symptoms as part of their presentation. But at least knowing it is a possibility opens up the door to discussions and takes away the fear and embarrassment associated with what are simply symptoms of the disorder, or potentially, another disorder. Symptoms just as normal as tachycardia or hypotension.

Being open about these issues allows doctors to treat the whole patient. It is not about expecting our cardiologist or neurologist to treat our continence issue. But to at least be able to discuss the issue and refer us to an appropriate specialist.

It is also up to us, as patients, to move beyond a TMI response to what are normal regular symptoms of Dysautonomia and other disorders. Too many suffer for our silence. Sex, periods, bladders and bowels AREN'T embarrassing unless we make them so. And openly discussing them is the only way we will change this perception.

So I say, lets remove the stigma and taboo and move forward in discussion and better all round treatment.

No.More.Taboo

Michelle :)

(I written extensively about the other taboo of mental health and chronic illness. You can find two of my main pieces here and here.)

I had to choose this Queens of the Stone Age song as my musical accompaniment. It's one of my favourites of theirs from the much under-rated Rated R album, plus the chorus kept popping in my head as I wrote.

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,600, keep donating and hopefully we can reach $10,000.