The grass is always greener, or browner in this case, on the other side of the fence.

(Ellen Ripley, oh how I feel your pain.)

Can I have a new bowel please? Pretty please? And a new digestive tract while I'm at it? It's been a long time since, my recalcitrant bowel, first made an appearance both here on the blog and in my life. And since those first heady days of gastric apocalypse, there has been little improvement. There have been changes. But not one of those changes have been for the better.

Where once it was the big D, diarrhoea. All day. Every day, Day after rank, day. It is now the big C, constipation, with the odd burst of D just to mix things up.

When stuck with diarrhoea, you long for constipation.

When stuck with constipation, you long for diarrhoea.

A regular healthy poo is up there with finding proof of Nessie. It's just not going to happen.

The grass is always greener, or browner in this case, on the other side of the fence.

But in truth both pose their own problems. Both now cause me syncope or pre-syncope. The rush of diarrhoea, triggers my Vagus nerve, and that in turn leads to a full body melt down. It is completely disabling. I'm yet to find a trigger for it's arrival. Why my body goes from weeks of besser block to mount Vesuvius is still unclear. I have examined my diet, stress levels, activity levels, medication timing, the works. And still I'll wake up some mornings and it's on, on like Donkey Kong. And for a day I'll be caught trying to balance the competing needs of my bowels, vomiting and passing out. Holding on to consciousness by my fingernails. After which I left more shell, than person. It's an emptiness built of exhaustion and expelling all your organs and squidgy bits out of your confused and overwhelmed body. There's just....nothing.

And then it's back to constipation. Besser block, in need of a jackhammer, constipation. For weeks. Painful, debilitating weeks. I was excited the other day, to discover that I had gained 2kgs. I had been hovering around 50kgs which is way too underweight for my 168cm frame. Then it dawned on me. It was poo weight. And, as someone pointed out over on FB, poo weight doesn't count. A moment's excitement dashed with a dose of reality. The Movicol which was supposed to help me move, ended up causing nausea, vomiting and a bp drop. And so my stomach which already looks pregnant after eating, anything, ends up distended and rock hard from the buildup.

And with both there is the pain. Stabbing pain. Cramping pain. Pain that leaves you doubled up and in tears. It stabs in your abdomen and it stabs in your bowels. It overwhelms and leaves you crying on the tiles in your bathroom, or on your bed, or on the couch, or the carpet. The pain of spasming bowels that still won't pass anything is a pain unto itself and not one I'd ever wish on anyone. And then the meds you give into, because the pain is so incredibly bad, end up exacerbating the problem. Catch-22 eat your heart out.

And just as you finally pass that first bit of besser block and have blessed relief, you are hit with the first stirrings of the dreaded diarrhoea again.

And you know even if you should manage to even have a half-hearted attempt at a real poo, it's never all. You never feel empty. It is half-arsed in every sense of the word. Because your colon is a poo-tease, and it sits back laughing maniacally, stroking a white cat, while you weep at dashed hopes.

You thought you'd have normal poo? Fool! Mwahahahahaha

Dysautonomia can play havoc with your digestive tract. You fill up quick when eating. You vomit up food. It simply sits in your abdomen doing nothing. It moves, or doesn't move. Too quick. Too slow. Too....something. Something, that it's NOT supposed to do. Something that involves pain and communing with the porcelain.

There is no greener side of the fence. We can laugh at it. Poo and all that surrounds it, is rife for humour. My friend Rach's recent post about self-administering enemas is hilarious (head over and check it out), but I also know what living like that can do to your sense of self. As strong as you become dealing with illness year after year, there are certain moments where you want to sob into your pillow.

It is incredibly debilitating. To your body and to your spirit.

And so you change your diet. You scour support groups and Medline and Pubmed. Is there something new? Have you missed an important paper? You meditate. You beg the Universe for an answer. You shell out cash for alternative therapies. Traditional Chinese medicine, naturopathy, reiki, healing ceremonies and crystals. You align your chakras and bark at the moon. Just in case. Because if you never tried and it was the answer....desperation wins and your bank balance loses.

And then you revert to taking a med to make it stop, make it start, to keep down the vomit and stop the pain. Because you have to manage it somehow to survive.

The world doesn't stop for you to do a six month wholistic treatment, where you focus solely on your health. 8 hours each day dedicated to taming your innards is a pipe dream. If you have kids, or a husband, partner, job, dog, desire to concentrate on something other than your health for five minutes a day, you can't just fixate on your defunct digestive tract. In reality, it's just one of a myriad of problems Dysautonomia throws up. When all your systems are dodgy it's hard to pick what to focus upon, except for the most pressing issue in the moment.

And it all leads to added anxiety. To worry about toilet availability. To worry about pooing yourself in public, or vomiting. Or both. Will today be a constipation day, or a diarrhea day? Will today be painful, well, more painful than normal? To knowing that if you don't get the med/food/water/energy mix just right, an outing could end up a complete disaster. Will the nausea impact on your ability to head out of the house, chat to others or simply remain upright? Will the burst of diarrhea end up in yet another ED visit? Will the excruciating stomach pain end in yet another ED visit? Will.........

But I take heart in the fact that I'm not alone. I don't want anyone else to be in this position, but the relief and comfort that comes from having friends going through the same or similar things is beyond words.

Plus, the ability to share a wry poo joke with someone who is also bent over, or stuck on, the porcelain?

Now that is priceless.

Michelle

And it's only 12 more days until I see the autonomic gastro. Please let him have some answers. Feels like I've been waiting forever

Faith No More's, Falling to pieces, just seems so apt today.

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.

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.