Numero Due.

(This scene from Bridesmaids is not unfamiliar.source)

Once upon a time going to the loo was just another boring part of the day. Like most people I went, did what was necessary, and then headed out to continue my day, with nary a thought for the process. There was even a time long long ago in a galaxy far far away, when I could fart without fear. But not now, not these days. My days of enjoying a nonchalant relationship with my ablutions is long past. Dysautonomia with a side of neuropathy, has turned normally uneventful loo time into a death-defying act.

If you are clueless, be thankful. I am quite jealous of your ignorance in the ways of loo complexity. Long may you live in ignorance of the ways of a busted gastric system and the joys of explaining your poo in detail to every medical professional you meet.

There are two ways to go with this illness: Dysmotility or Gastroparesis where your stomach slows to the point of barely moving and you can end up constipated or even impacted. Or, you can end up like me at the other end of the spectrum. Where your gastric system has seemingly been clubbing and ingesting copious amounts of speed when you weren't looking, and you are blessed with constant diarrhoea and fun things like Dumping Syndrome.

There's also this tricky problem whereby pooing (or even peeing) can trigger your vagus nerve. Or just to mix it up (ie your vagus nerve is a dick), when stimulated, this particular nerve can trigger your need to pee or poo. YAY. Sometimes, I feel oh so lucky. My body was not content with simply having my recalcitrant bowel which has meant that I have lived with the trotts every day for two years. No, that was not enough. To up the ante it decided that every time I need to poo, my vagus nerve must be triggered. This has meant that I have nearly passed out on the loo more times than I can count. This of course brings a whole new level of worry to my life. Lets face it the last thing you want is to wake up on the floor of your bathroom only to find yourself decorated in your body's foul offerings. Or, God forbid, on someone else's tiles, or worse, manky public tiles.

You see, at this point, I pretty much need Bear Grylls to come along and do a Man vs Wild episode in my bathroom. I'm sure he could teach me some handy toileting survival skills, or at least how to start a fire with left over toilet rolls and nail clippings. I draw the line a pee-drinking though, Bear can keep that one all to himself.

It all goes a little like this:

1. Eat or drink, anything.
2. Resign yourself to the fact you'll need to go to the loo within the next half hour (on a good day) or next five minutes (on a bad day).
3. Wait for the first hot flush. Ask surrounding family members if they are hot. Have them look at you with a raised eyebrow. Answer with a short sarcastic, "no" and a clearly implied "Dumbarse!" You'd think I'd have learnt by now. But hey, a girl's gotta live in hope.
4. Feel the first wave of nausea and short stabbing stomach pain.
5. Delude yourself that you can wish away said heat, nausea and pain.
6. Some how forget that each time you try to wait, or will it away, it makes it ten times worse.
7. Start to get greying vision and muffling of sound.
8. Decide this is the perfect time to stumble to loo (rather than two minutes before when you could still coordinate your legs).
9. Lurch to feet, grab at door frames and towel rails in the mad dash to the loo. (Tip for the day: towels move on the towel rack and are not a suitable stability aid and you may end up on your arse or sliding your way to a face plant in the toilet bowel.)
10. Start desperate internal dialogue of "I think I can. I think I can".
11. Get to loo just in time for full pre-syncope, hold onto wall and shower glass, brace, and hope for the best.
12. Invoke names of all know deities, offer up first born son and kidneys, if only they will let you make it through the seemingly never ending hell without passing out/vomiting.
13. Ride the wave of foulness.
14. Suddenly realise it's over and start breathing again.
15. Be left a wrung out, weak mess, slumped on loo, with swollen purple feet thanks to the accompanying sudden surge in pooling.
16. Drag self to bathroom sink. Wash hands. Run cold water over pulse points in wrist and wash face.
17. Celebrate that you made it through once more with dignity mostly intact.
18. Make way slowly out to couch. Suck down some fluids and resume normal functioning/nanna nap.
19. Repeat multiple times throughout day.

This process of course can be complicated by:

A) a particularly unpleasant day where you go through Steps 1 through 18, after which you lie/fall on bathroom tiles/crawl back up onto the loo/grab your puke bag/do your best Mt Vesuvius impersonation both ends/breathe/regain enough presence of mind to fall gracefully back onto tiles/crawl back on loo/....rinse and repeat. This process can go on for hours and may end in multiple bruises, much whimpering, and all round woe-is-me.

B) being out in public. These days I plan my trips by toilet availability, and public toilet cleanliness. For example. I know if I am heading into St Vincent's Hospital, there is a clean pit stop at the 1/2 way point at the Blackburn Nth Maccas (I can also grab a handful of salt sachets on my way out). Or if it's a bad day there are three shopping centres, with okayish/bearable public loos, between home and Blackburn Nth. I also know the independent petrol station near the Chandler Rd turn off is sympathetic to a pasty-faced, slightly incoherent and panicked woman with a cane, and lets them use the staff bathroom no questions asked. I also know the placement of all the public loos at the hospital and where Mr Grumpy can drop me off in a rush. Though I did find out the hard way, and with some pitiful tearing, that the reasonably clean public loos near the florist out the front of the hospital is closed on weekends. I can apply such knowledge to my local cafes, shopping centres and in a pinch sections of road with good tree/bush coverage in case it's a desperate au naturale moment.

It should also be noted that even without food or water this toilet fun time can also be triggered by:

1. Standing.
2. Walking.
3. Sitting in a car.
4. Heat.
5. Lack of water.
6. Exertion.
7. Breathing.
8. Mercury being in retrograde.
9. Spilling some salt, walking under a ladder, kicking a kitten in a former life, or.....
10. .......a day ending in y.

Oh, for those long lost days of toileting freedom. Who knew that something so simple could become so complex or restrictive? Or that I would be buying Imodium in bulk? Or have so many doctors view, explore and probe my nether regions? Or long for solid poo, like others long to win lotto? 'Tis a sexy and dignified life I lead.

But what can you do? As Doris Day would say, "Que Sera Sera".

Michelle :)

Doris Day, Que Sera Sera (1956)

Dear Bob and co: Day 8 #NHBPM

Well I'm sort of back, but not really. I have managed to make it from my bed to the couch with a mixture of swearing, moaning and old man shuffling, and that's a definite improvement. I have to sit like I have pole inserted where the sun don't shine and still need to bellow for my minions to supply me with sustenance and pain meds, but all in all I'm taking it as a win. Plus I've managed seven days of blogging in a row and I'm damned if I'll let this stupid body of mine get in the way of sharing Day 8 of my crazy with the world.

(source)

Topic: Write a letter to your health.

Dear Bob (Dysautonomia) and Jeff (my mutant jugular) and my recalcitrant digestive system and the rest of the gang,

What can I say guys? It's been fun? Nope that's not it. It's been a blast? Well maybe with you digestive system, given how my innards have been the last year and a half. Who knew doing a normal Number 2 some time this century would be added to my bucket list? Certainly not me. But that's as good as it gets for those challenged in the regular poo department.

And you Jeff, well you just never know when to quit. You've embraced your mutant side with gusto and seen reluctant to move out. Like a damn cockroach, I'm pretty sure you'll survive the nuclear apocalypse So here's hoping the Mayans were right and/or the zombies are coming. That way there's a chance one of the walking dead will give me an atomic hickey and rip you right out.

But you Bob, well you were my first, so you'll always be special. You and I go way back to that first collapse at work. That delightful trip to the ER where I was asked 28 times if I was pregnant. Apparently they don't teach the ER doctors what the word 'hysterectomy' means any more. You'd think telling them I was womb-challenged might have been a giveaway, but no. You lead me to my first fun time with IV fluids and being tossed out unable to walk, because they couldn't work out was wrong. Good times. I feel like right about now I should break out in a heart-felt rendition of Memory. But no that's right I'm banned from that now thanks to you. Belt out a tune and my pulse pressure disappears and I tend to fall over, complete with dramatic grasping of chest. It's been one rip snorter of a party with you. Did you know we are coming up to seven years together? No? Typical. I guess you can blame it on the brain fog, though I'd prefer to blame it on the boogie. Seems the traditional gift is copper. What copper thing can I get you? A 7.62mm rimless NATO round, sounds like a promising choice.

Frankly I'm over you and your dodgy mates, Bob. I think it's time we broke up and went our separate ways. I've never really been into the Big Love thing anyway, just way to much work. You and all your brother husbands can pack your bags. If it's all the same with you, I really think it's time for all of you to just bugger off. It's definitely not me, it's you. It's very personal. I don't want to be friends. I want to be foot loose and fancy free. Preferably on a beach somewhere, with hot cabana boys bringing we margaritas with tiny umbrellas, oh and foot massages and....

So see you later fellas.
Hit the road Jack.....and Jeff and Guts and Bob and all the rest.
And don't you come back.
No more. No more. No more.

Michelle :)


Day I: Why do I write about my health.
Day 2: Find a quote and use it as inspiration.
Day 3: I don't know about this, but I'd like to.
Day 4: A chronic handbag
Day 5: Health Activist Soapbox 
Day 6: And I've done my back, because it's not like I had anything else going on.
Day 7: Setbacks. Vlog time.

Considering all the male names I use for my disorders I thought this Oz classic by the Divinyls, was perfect.

Momentum

I've been struggling lately. Not so much with the physical side of being ill. The day-to-day practicalities hold no mystery for me. Most of it is simply white noise now. I know I'm getting worse and as weird as it sounds, I'm pretty meh about that side of things. My recent tests just confirmed what I have known in my heart for quite a while. It's a weird place to be. I'm not happy that I'm getting worse. But I am strangely content to have it made concrete. Now, I don't have to think about it. I don't have to sit and wonder. I can check it off my list and move on, till the next time. But the overall emotional/spiritual/psychological toll is exhausting.

I can't even pinpoint what it is that is so exhausting. It's not like there has been a specific instance that stands out. It's more like the sea washing over a rock. Slowly, wave by wave, the rock is eaten away. You can't even detect the individual bites with the naked eye. But all of a sudden where there was once a great rock there is now naught but a pebble. Chronic illness is like the sea, and my reserves are very much that pebble. There is no real respite. Respite, if you get it, comes in the form of a less symptomatic day, rather than a full day of freedom. You get drawn into a cycle where your entire existence begins to revolve around illness. The search for answers, cures, meaning. You suddenly look around, and you, and your world, are defined by that which you so despise, and you don't even know how it happened.

When you say you are meh about the physical side of things people tend to bombard you with the "but you can't give up line". Mistaking acceptance for defeat. The reality is far from it. I still do what I have to do to manage both Bob, and now, my gastric system. I take my pills, I see my doctors, I take the tests, and do the research. But I am cognisant of the fact that there are aspects that I cannot change no matter how hard I try. And part of the challenge of living with a chronic illness is to pick your battles when you have limited resources. It's about finding your priorities. And deciding what you want for your life. What those battles may look like will be different for every person. But for me I know there are things you can change and things you can't, and spending a life focused on the can't side of the ledger is slowly crushing me.

I have been fighting the good fight for nearly six years. I have a pretty good handle on where my health is presently and where it is going. Early on, focusing on my health at every opportunity served a purpose. It gained me access to a diagnosis and a doctor who understood my condition. It helped me to understand what was happening to my body and options for treatment. It helped me to find a community of people who were dealing with the same illness and provided me with a support I so desperately needed. But as time goes on needs change. Focusing on my illness every second of every day is no longer of benefit. In fact it is problematic. Practicalities aside, such focus is a thief. It steals all your time until there is no room left for life. It tells you lies and makes you believe there is nothing of you but your illness. It leaves you beyond exhausted. And I can't maintain that level of intensity any more.

My plan for this year is to find my balance once more. I am having a sabbatical, if you will, from my sick person job. I have worked long and hard at that job, 24hrs a day, 7 days a week, 52 weeks a year, for almost 6 years. I think I'm well and truly due for some long service leave. I am going to reclaim me. Because the reality is that if I don't, I'm going to burn out. The reality is that if I don't make a concerted effort to reclaim me, I'm going to waste what little energy I have. Without effort I will lose the battle for me to illness. Not because I didn't fight hard enough, but because I surrendered my life to something that doesn't even acknowledge, let alone give a crap, about the fight.

It wont be easy. Balance is hard at the best of times. When you are living with chronic illness it can can be damn near impossible. The reality is your health takes up the majority of your life. Whether it is simply the living with symptoms that require daily management, or dealing with a medical system not set up for long term or complex illness. Even when you make the decision to change, obstacles are thrown at you so fast and so frequently, sometimes all you can see are the tracer rounds. But that doesn't mean we should stop trying. It doesn't mean we should limit ourselves. Because the reality is that it is we who limit ourselves, not our illnesses.

So,

I'm going to believe there is more good than bad in the world.
I'm not going to read more journal articles.
I'm not going to surf more medical webpages.
I'm not going to spend hours on forums discussing my health.
I'm not going to think about all the things that I can't do.
I'm not going to think about all the doom and gloom that my doctors send my way.
I'm not going to play into the sick role any more.
Because I can't.
Because for me it's not healthy.
Because for me I want to be something other than the sick girl and all that entails.
I'm choosing to swim rather than drown under the weight of it all.

That's not to say that at times I wont tread those paths. But it'll be on the periphery, and it'll be for short bursts only. Because that's what balance is about. It's not about denying my illness. It's not about giving up. As trite as it sounds, it's about finding me again. It's about making a deliberate effort to find those other aspects of life that give it meaning and bring you happiness. There will be times where I'll succeed, and no doubt times where I will spectacularly fail. But I'm still going to try. Because that's all I can do.

Michelle :)

My dear friend, and fellow Dave Grohl groupie, Autumn, put up a video today that seems so appropriate, so I'm sharing it here.

All I want for Christmas is to Fart Without Fear.

Well my gastro saga continues. I'm sure my mother is proud that I've been keeping the world updated on my recalcitrant bowel, since August. I wonder if she'll add it into her Christmas letter this year? Tucked away between the updates on her roses and their trip to Apollo Bay. Mind you, you'd think she'd be used to my policy of too much information is never enough. Hell, I take every opportunity to bring up the cousin loving a few generations back, and set out nicely on the family tree, that I blame for the genetic nightmare that is my body. My people are genetically lazy, folks. Apparently it was just too much effort to saddle up the mule, pat the dust off your best burlap shirt, select your best courting turnip, and make your way over to the next, not-genetically related, village.  I can hear the banjos from here.

As I mentioned briefly in the last post my dalliance with H1 and H2 antihistamines was short lived. My gastric system, mounted a very successful campaign, and wore them down until they finally waved the white flag. So now I am back to ops normal. Might as well just put a pillow on the tiles and screw a TV to the bathroom wall. It's not like I'm leaving any time soon. Oh Universe, why must you give with one hand and take with the other.

My green credentials are going down the toilet, literally and figuratively. So sorry rainforests of the world, but my consumption of paper products is back to excessive. And my water consumptive ideal of "if it's yellow let it mellow, if it's brown flush it down" has gone out the consistently umber window.

When last I saw my cardio her only advice to deal with my near-syncope each time I go to the loo (oh yeah I'm living the dream) was to be careful. Yep, that'll do it. Maybe I can put crash mats all around my loo? Or grab out all the bubble wrap Mr Grumpy hoards, and bubble wrap my entire bathroom. At least I can pass all the time I spend in their working out new and creative ways to pop the bubbles.

My trip to Gastro Guy, Wednesday was equally underwhelming. Yet again I was faced with "Oh Shit!" face when describing my symptoms. Looks like the reflex that controls this pesky issue is broken. Even better there is nothing available in modern medicine that can fix that little problem. YAY. Let me party on down with that exciting morsel of information. There may, potentially, be a drug that may help, but is only available in clinical trials here in Australia. Access outside the trial requires a combination of correct planetary alignment, prayer to every deity known to man, and payment by lottery win, kidney and/or first born. He did end our consultation with "I'm going to have to Google this", which has left me so full of confidence.

Oh, and I forgot, I get to take horse tablets for a few weeks to kill off any errant bacteria after he decided that there was something he didn't agree with on my Small Intestine Bacterial Overgrowth (SIBO) test. Doesn't that sound lovely. I keep having images of colonies of bacteria setting up some sort of feudal society in my bowel. Can't quite recall what it was, as this was after the "you will be stuck peeing out your butt for the rest of your natural life" revelation. Kinda hard to concentrate after that. All I could think was the least he could have done is given me the news with a barber shop quartet, in the highly-inappropriate, Family Guy style.

So back to basically homebound now. But what can you do? Someone asked me "how do you keep bouncing back from all the bad news?" Well, there isn't really a choice. I can sit and weep into my cornflakes (which I have done, but it just made my cornflakes taste like saddness, and a little salty). Or, I can suck it up and move on. I can't change it, so I might as well amuse myself with inappropriate jokes about my family tree and messed up digestive system. Besides bathroom humour is funny no matter what your age.

Now if only Santa can grant my one Christmas wish, and let me fart without fear. It's not too much to ask is it? Sheesh, jolly fat man. I've plied you with biscuits and milk for years, and even left out carrots for Rudolf and his hairy brethren, time to pony up.

Cheers
Michelle :)

Given my current health predicament I do think it only fair that Jensen Ackles stop buy and give me a foot rub, or feed me chocolate, or...... I think I need to start a Twitter Campaign.

I leave you with an annoying, yet appropriate song.

Don't forget to enter the draw (click here) for a copy of Animal Planet, the new novel by Charlotte Wood. 

Entries close TONIGHT!! midnight, 25th November 2011.

.....and the horse you rode in on.

Warning: Woe is me post ahead.  May contain TMI, pathetic loads of self-pity, a wee bit of incoherent ranting, and sailoresque swearing.

Being ill has knobs on.  It really does.  Just when you think you've taken a step forward, you find yourself hugging your porcelain lover or sprawled out on the cold, hair-covered tiles of your bathroom.  It's frustrating beyond belief when you do the old "think positive" trick and your body says "Hell no, crazy woman.  You're my biatch, and you might as well get used to it".

My gastric system is out of control and frankly the last few months have sucked.  All the drugs I take are basically doing bugger all and I often wonder why I persist.  I look back at this depressing, rambling, vlog I did a month ago and realise nothing has really changed.

It's rather confronting to have the truth displayed up there is full pasty colour (and what's with my weirdarse left eye?).  In some ways I am better than when I went into hospital, though I'd be hard pressed to find specifics.  And no amount of positive thinking is going to change the facts.  I can't even get back into the GI specialist until the end of November so I am stuck in a gross no man's land that has left me pretty much housebound and dependent, since August.

Whilst, the physical symptoms that I currently have are quite repulsive and hard to deal with, it's the way they impact on my day-to-day life that is causing me the biggest heartache.  Yes I need to go to the loo a bazillion times a day, that I can sort of deal with, though my butt hole may disagree.  But this one issue impacts on my ability to leave the house.  I have to be sure I am in close proximity to a loo at all times.  When I need to go, I need to go immediately.  There is no choice.  There is no clench your butt cheeks and will your sphincter to stay closed, it's a mad dash to the closest bathroom with a quick prayer to every deity known to man that you'll make it.  I even have an emergency pack in the car, just in case the humiliating and downright disgusting sphincter fail should happen to occur (it hasn't yet, but I will now run around and touch every piece of wood in my house). Yep, I'm living the dream right now.

Then there is the joy of the public loo to contend with.  I don't have time to wait for the key to a public bathroom.  And more importantly, I don't want to have to use the rancid petri dish that is the public toilet. Particularly as the last few months I have come close to passing out each time I go.  Face planting on my own tiles is not great, but doable.  Face planting on a melange of strange short and curlies, and mystery 'deposits', in the unisex loo of the local 7/11 is not high on my 'to do' list.

The logistics are only one fun part of the problems associated with increased gastric symptoms.  Going so frequently, means weight loss, which in turn, means increased Bob symptoms.  I am exhausted.  I have spent more days confined to bed in the last few months than I have in the previous year.  More days where standing becomes a Mission Impossible.  More days where simply showering leads to squishing magic carrots down the shower drain with my big toe, and crawling back to bed.

Some days start relatively okay and I make plans to catch up with friends.  Stupid, delusional woman. But my body is currently balanced on a knife edge and one little thing leads to a big ugly fall.   That one thing could be doing a load of washing.  Daring to sit out in the garden for 10mins.  Or even, the simple act of showering.  Last week I was really looking forward to seeing my best friend, but an hour before she came over I had to cancel.  Of all the friends in my life, she is the one who is never phased by me being sick.  My being KOed on the couch would be okay, we'd still chat and laugh, I'd just be horizontal and vague (not unusual). But on that day I knew I couldn't even do that one simple thing.  And that's what I hate about this whole illness crappola.

I can deal with the physical symptoms.  You get used to managing.  To becoming creative (eg cooking whilst seated).  It's not pleasant, but it's part of the drill.  I look at the scales that class the severity of Bob dependant upon criteria such as heart rate, blood pressure, how long you can stand, and think how inadequate they are.  The severity of Bob and other illnesses is related to how much they impact on my life, not whether my bp drops into my toes when I stand.

I am shat off that I can't drive, that I can't just go for a coffee, or even, sad as it is, do the grocery shopping.  I am peeved that this illness stops me from catching up with a dear friend.  I am crapped off that I can't participate in my family like I want.  I want to punch well-meaning people who tell me to "have hope", 'it'll get better", or "you just need a positive attitude".  I don't want to be 'brave', or an 'inspiration' or all the other words that get tossed around.  Nor do I want the expectations that are attached to such labels. I am neither. Dealing with the hands you are dealt, when you have no choice, isn't 'courageous', it's merely practical. Bare bones, one step in front of the other. Illness is ugly and messy and sometimes you just want to scream. And so I am angry, in ways I can't even articulate, that the small amount of freedom I had prior to August has pretty much evaporated.

Some days, living with Bob is like treading water, maybe if you're lucky a little sculling whilst you float on the surface for a while. Other times it feels like you're drowning under the weight of the emotional, social, and psychological crap that comes along with the diagnosis. I don't want to acknowledge that with no change since August, this may be my new normal. I can't wrap my head around that yet.

So instead I take the oh so mature high road and say to Bob and my gastric system, "Fuck you, and the horse you road in on".

Tomorrow I'll paint on my happy face, fight through my bad attitude, and keep on keeping on. But for today I choose the classic "Pout and Wallow" method of dealing. Oh how proud my old psychologist peers would be.

Michelle

Nothing says I can't wallow and listen to funky 80s dance hits.

Because somedays, it's all about Plastic Bertrand

Well my plans for normal have gone a bit awry.  Bob and my stomach have ganged up to bitch slap me back into submission.  And once more my world consists of pjs, pillows and white tiled ensuites.  Crazy plans of normal have been replaced by harried trips to pharmacies, bulk purchases of air freshener, and, an apparently infinite, bowel of despair.

Times like these, only Plastic Bertrand can truly explain how I feel. (le sigh)



Michelle.