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The Importance of Taking Your Medicine with Humour

autoimmune crohn's disease healing stories of healing

I  have been delaying posting this blog entry.

My daughter, Jaime, suggested I might want to reconsider telling this story. 

My ego begged me to throw the computer in the bin. 

I didn’t even give my husband a heads up on it, and I certainly should warn you that this post is honest and a little bit gross. TMI, as Jaime would say. 

When my daughter asked why on earth I wanted to tell such an embarrassing story, I told her that it wasn’t so embarrassing to me anymore because I know that so many people suffer things like this every day. People with autoimmune diseases are often struggling with their health, and these struggles seem to embarrass us because there’s so much taboo around us being consistently impervious to perfect health. Sometimes, things happen to us that are disgusting and embarrassing which makes us want to disappear while we flare. But flaring can’t always be done in private. Flaring of a chronic condition doesn’t wait for our shift at work to be over, or our holiday to be done, or the kids to drive themselves to school, so sometimes we are caught out publically with our symptoms. 

But what if we didn’t care about what people thought of us after something that was out of our control went wrong? Wouldn’t it be great if more people had a giggle with you about your health hiccups instead of just pretending that they didn’t exist? What if we could tell ourselves that shit simply happens, and instead of shame, could we maybe try to share our experience with a light smile? Could the embarrassing story, in turn, brighten someone else’s day to hear that we’ve all had one of those days?

Well, here goes. Let’s see...

Once upon a time, around seven years ago, I was working in a bingo centre. (I just heard the collective gasps of my friends who know this story. I can feel their energetic vibration as they shake their heads, whispering ‘Oh no. Don’t do it, Jade.’ Apart from Eds who will be rubbing her hands together, saying ‘Yesss! It is time.’)

Back to the bingo hall (yeah, I’m gonna tell it. Sorry to my ex bosses who have no idea about this tale). It was around the time that, somehow, Australia seemed to have run out / sold out of a maintenance drug I had been taking for Crohn’s disease called Colazide. Luckily, I just happened to have a gastroenterologist appointment to assess my condition when big pharma cut me off and so my doc wrote a script for another type of drug that was sort of the same, but not. I have a history of not being able to tolerate drugs that are sulfa based, and it had taken my doc many years to find a drug that didn’t give me worse diarrhea than I already had, so it was such a disappointment that the drug wasn’t available now. This new drug I was to take did have sulfa in it but my gastroenterologist assured me I’d be fine. So I filled the script, took the new drug and went about my life.

A couple of days into this new drug taking regime, I started to notice that my guts were becoming more unpredictable than usual, which is fine when you’re hanging around the house, but I had to go to work. I called my gastro dude and announced with satisfaction that, yes indeed, just like I had predicted, my body clearly couldn’t handle this new drug. He kindly suggested that I try to hang on for a couple more days and give my body some time to get used to it. He suggested I take some gut-slowing Imodium medication in the meantime. I wasn’t convinced but I sucked it up, offered him some praise on his new plan, took the anti-diarrhea drugs, and set off to work.

The night went fairly well, apart from a few urgent pit stops, which were eventually slowed by taking another tablet. 

As the end of my shift approached, I was on my own in the cashier’s office sorting through the takings and getting the end of night paperwork done. Our bingo caller, out in the hall, announced that there were only three games left before the jackpot game and we were nearing the end of another night of bingo shenanigans. I had started to count up all the cash and takings for that evening’s session and I had strewn notes and coins and paperwork all over the cashier’s desk. It was a ghost town in the lobby but you could feel the excitement reverberating in the hall, the silent concentration of patrons listening carefully to the caller’s rhythmic voice, then the sudden excited yell of ‘BINGO!’, followed by a hall full of moans from disappointed people who had been waiting for their number to drop.

I had a good feeling that I was going to make it through the shift without soiling myself. I imagine a lot of people might take that feeling for granted but I don't. Soon I would be able to race home and rest easy knowing that I wasn’t far from my private throne.

I was gonna make it through my shift, after all. 

Now, for any seasoned travelers who have used an anti-diarrhoea drug for Bali Belly or for a mild dose of gastro, you know that this drug is good. Well, it’s certainly good for a little while, isn’t it? It can get you through a car ride from a restaurant to home and maybe it can get you through a couple of hours of much needed ‘keep out of the bathroom’ time when you’ve got an important meeting, but at some point, this drug realises that you’ve become quite confident in its medicinal ability and that’s usually the time it decides to pull the rug out from underneath you, wagging its patronising fingers, as you quickly come to understand that you’re on a slippery slope to sharting in your pantaloons. 

‘You should never have trusted me,’ whispers Imodium over its shoulder as it walks away from your body, leaving you with a rise in fear that seems far greater than any death. 

The thought of embarrassing myself often outweighs any other emotion for me. I should be used to it by now. Once I scolded a group of teen boys for carrying on in a movie theatre and then promptly tripped and fell down the cinema stairs. You think I didn't wish for a small sinkhole to open up underneath me as I lay flat on my face? And I worked as an usher at that cinema. I saw those boys again and again.

Embarrassment has a way of making us panic I find, so as I stood there, counting the cash with only the sound of numbers being called out over the speakers, I felt my overworked stomach gurgle and snake fluid through one side of my abdomen to the other, rippling a wave of pain in my guts, causing me to double over. My eyes widened with pain but mostly they widened from the threat of impending embarrassment.

I panicked.

I panicked because I understood from experience that I had approximately 25 seconds to pack up the takings I had left all over the counter, place it all into a container, shove it into the back office situated behind me, lock the office door, escape from behind the cashier’s desk, lock that, run into the lobby, throw open the double doors to the bingo hall, walk as quietly as I could (as to not disrupt the very serious bingo players) and walk as quickly as I could some 50 meters through a silent crowd, smash through the toilet entrance, race into the female toilets, pick a cubicle, get my pants down and relieve myself - not too noisily, of course. Be a lady, they said.

As I wasted about three seconds thinking about the logistics of this obviously flawed plan, another surge of pain and watery sounding gurgling hit me again and I knew that if I tried the first plan, I’d only make it halfway through the hall before I ended up on the floor in a pool of my own stench whilst Janice, Beryl and their friends looked down at me flailing around on the floor near them. There’s a fair amount of stigma in dropping the kids off near the pool, if you know what I mean, and it wouldn’t take those eagle eyed ladies long to figure out I’d soiled myself, all while disrupting their game, would it? My bet would be that they’d judge me pretty hard, perhaps pointing and laughing at me like those boys in the cinema. I wouldn't go through that again. 

I opened up the cash box, dragged my arm across the whole bench space and guided the half-counted money into it, bolting into the back office where I closed the door behind me, locking myself in. My panic had made sure that I wasn’t thinking straight but I at least had some semblance of logic in me to realise that although I had locked myself away in a more private environment, there were still small panes of glass that you could see me through. I stopped and scanned the room. I was out of time for plans, not that I had one. All I had was the pressing issue of my bowel playing host to a tidal wave that was about to unleash.

Looking around frantically, my butt cheeks clench tighter than one of Jane Fonda’s squats, hands groping at my belt, I spied a smallish red bucket, one we used for running our raffle ticket sales during the night. I flipped the bucket upside down with shaking hands, the money and bits of paper scattering all over the floor, and I ducked down out of sight.

And then, my friends, what choice did I have? That raffle bucket became what some might call a makeshift dunny. Time waits for no man, neither does Crohn’s, it would seem.

I cried out a little in pain as I hunched over that bucket in the corner of the office. There, into that bucket, splashed my dignity.  At that moment, my dependence on the drugs that were meant to heal me, made the situation dismally worse. I let myself cry for a few seconds at the shame of it all. In saying that, there were a few tears of relief cried that I’d been able to avoid the worst case scenario of doing what I had just done in private, in front of 100 bingo patrons.

It could always be worse. 

Then after the pain and spasms and disgustingness was done with me, I cried about the fact that I had no idea what to do with a bucket of, well, let’s just call it My Bucket of THAT. At that point, the situation was indeed pretty bad. 

I won't go into details about the disposal of that bucket, but I will tell you that it never again graced the halls of the bingo centre. I believe that no living soul ever saw that red saviour again. But I will never forget you, red bucket. Never. 

Those of you who know me, know that as long as there’s even a tad of comedy in an embarrassing story, I’ll tell you about it. If there’s no comedy in it, I’ll try to find it. So it only took me a few hours before I told my husband about the whole sordid mess. I was upset initially, sure. I had to take an unexpected side trip to the toilets at Macca’s for a pit stop on the way home from work that evening and I was reeling over the fact that my bowels kept betraying me. 

I called my specialist the next day to inform him that the new drug and I were caught up in some sort of toxic relationship and that we were consciously uncoupling. He had to agree that it was probably for the best. I started to recover very fast after I stopped taking that drug, which therein left the problem of being without a mild drug, forcing me to look at harder drugs to stay in remission, but that’s another story. 

After I had gradually started to tell my dearest friends about my most embarrassing experience, I was met with what I like to call some ‘giggly healing medicine.’ 

My story was received with eyes wide, open mouthed, shocked faces, hands over mouths, tears rolling down cheeks laughter. I was called Bucket Queen for weeks. 

When we were going somewhere, I’d be asked if I’d brought my bucket? Did I need my bucket? Were there any buckets where we were going? Hey Jade, there’s a deal on buckets at K-mart at the moment. Keep your eyes off my buckets. That sort of thing. 

The joke went on for a long time, it’s still a good one that crops up. Sometimes, it even seems like a fine story to tell at dinner parties. 

Why do I love this response to my embarrassment? Because as soon as I was able to start laughing at myself, as soon as I understood that things could always be worse and that the people I confided in were still my friends (even though in my mind, I was the most disgusting human being ever to have lived) only then after we had all laughed about it together was I able to put it all behind me. No pun intended. 

When we laugh at things that have gone wrong, especially those embarrassing things, we move on. We let it go. I’m not saying that it’s easy to laugh at yourself when you’re not ready. ‘Too soon’ is a real thing, for sure. But once you’re ready to share the story and you see that your people aren’t running for the hills screaming, you can start to heal. 

There’s been all kinds of experiments done about laughter and healing health. Laughter draws people together and bonds you to one another - even if the other person wasn’t there to witness the horror, they can still feel included in your story, and whether they wanted to or not, they can experience it with you. Sorry, folks!

Laughter decreases stress hormones and increases your immunity, leading to better protection against diseases. When we laugh, it triggers all those good endorphins that promote overall wellness and would you believe that it can also even help to temporarily relieve pain? 

So, here I share my most embarrassing story with you - not because I want your pity, but because I want you to know this; every bit of your journey is laced with stories filled with ups and downs. Your stories of trauma, ecstasy, disappointment, wins, embarrassment, pain, and triumphs are stories of a wonderful you. 

Your experiences mould you into the person you are right now, and right now, you are perfect. You are, at this moment, perfect - or Mofect as my daughter and I like to say. 

Whether you projectile vomited at a restaurant after they assured you the dish was gluten free, you had an asthma attack after laughing too hard, your joints were too inflamed to get yourself back up off the floor you were playing with your kids on, or your spasms were too painful that you had to cancel on your friend for the fourth time in a row. Whatever your symptoms, your experience, or your setback - we can all be in this together with a sigh, a knowing nod, and a bit of a smile. We've all been there. 

It doesn’t much matter what happened yesterday because now is now and you have a choice; laugh at yourself or not. I choose to laugh at myself when the time is right because it helps me move on from getting caught in the spiral of embarrassment and negative self talk. I laugh about this with my friends because I know that tomorrow could bring something else that might be harder to laugh at. I laugh at it because I have a wicked sense of humour that helps me to see the funny in most things. But mostly I laugh because, if not, I could cry. 

So, if a friend honours you with a retelling of their most embarrassing tale, feel free to hug them, support them, and giggle with them. You’re helping us to heal. Once the initial band aid of telling the story has been ripped off, you can set that embarrassing dragon free. Because the only way to slay the dragon is to laugh at it and accept it for what it is - a side-busting, funny story, that you can continue to inappropriately tell at dinner parties for years to come.

Thanks for reading.

Much love,

Jade x 

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