Step 1 Numb.

Sitting on the couch tonight, I feel.....I'm not sure what. Empty. Numb.

Standing on an empty beach. A black and white photo purged of detail. An echo of a person. A ghost on the scene. The invisible winds erasing me particle by particle. Until I am but a whisper. It's easier that way.

Remove yourself. Erase yourself. Too raw. Too soon. Not today. Self-protection mode. Until later.

I'd built up today. I had told myself not to get my hopes up. But a part of me did. The part that has been clinging to the edge of the precipice by its fingernails. The part that said this is bearable because I just have to get to there. The dot on the map. Point B. I can deal with the journey from Point A as long as mythical B is reached. When I can step through the wardrobe to a world of magic and wonder, hope and strength. A world without pain and worry. When the journey is made bearable because there is a reward at the end. That part of me may have been small but it was powerful. More powerful than I realised.

I wish I was still on the journey. Uncertain future is better. Than cold hard reality.

I sat in the appointment today and my fear was realised. That fear I had buzzing in the back of my mind for most of this year. That I'd stuffed in a cupboard bound and gagged. Because if spoken it would give it power. And yet today it was spoken and now I have to make sense and get through. My pain for the last year is not gastric but neuralgic. Neuropathy strikes again and I get to have knives in my abdomen. An answer but no solution. And now I have to learn to live with it.

Live with it.

Live with it.

Live with it. 

I may have some hope with some issues that surround. The gastroparesis. The fact I can't crap like a regular person because the nerves in my muscles don't work properly.

"We see it in a lot of people with chronic neurological disorders."

How many times have I heard that this year?



Losing weight?

"We see it in a lot of people with chronic neurological disorders."

Unexplained loss of function in one foot?

"We see it in a lot of people with chronic neurological disorders."

Not being able to work my muscles properly to defecate?

"We see it in a lot of people with chronic neurological disorders."

Excruciating abdominal pain?

"We see it in a lot of people with chronic neurological disorders."



It happens in a lot of people. But we can't be arsed working out why, or finding solutions.

It happens in a lot of people. Like that makes it better.

It happens in a lot of people. So for us it is meh.

It happens in a lot of people. A skewed group of extremes which creates a skewed view of normal.

It happens in a lot of people.



It happens.

Live with it.

We can do this and this. But really it won't change much.

See you before Christmas.

Live with it.

Live with it.

Live with it.

Deflate. Vague out. Retreat. It's palpable. It's visual. Even in the chair I could feel myself drop. The tense anticipation that held me together left and millimetre by millimetre I shrank. Down and into myself. Put up the walls and dissolve the emotions. Don't feel. Not yet. Ignore. Process later. Down the track. When you're stronger. When your armour is thicker. When the defenses are raised. When you are that other person. The one not crushed by dashed hopes and broken dreams. The one that must learn to live with it.

Live with it.

Live with it.

Live with it.

If I say it enough times I'm sure I'll understand.

Michelle

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.

It's life, Jim, but not as we know it.

(Made it to have 1/2 an hour at a local lake a couple of weeks ago. It was overcast and set me back, but it was beautiful watching the swans and just feeling the breeze.) 

(The words and thoughts are sort of rambling and unconnected and flowing today. Headaches and pain and blech all mixing together.)

Life. It's not going exactly as I planned. Or even remotely in any way shape or form like the life I had planned.

But, Mousie, thou art no thy lane [you aren't alone]

In proving foresight may be vain:

The best laid schemes o' mice an' men

Gang aft a-gley, [often go awry]

An' lea'e us nought but grief an' pain,

For promised joy.

Robert Burns, To A Mouse on turning up her nest with a plough, 1785*

Lying in bed again. Again. Again. Again. It's starting to wear me out. If it's not the pain, it's the post-pain exhaustion. Not that the pain ever actually leaves. It's just a question of degrees now.

Life is.... challenging, testing, demanding, confronting, painful, sucking, shit, crap, f'ed up.

I lay curled up in a ball next to Mr Grumpy last night. Across the bed because that's where I fell after making my way from the bathroom. He just picked up my head and lay it gently on his stomach and opened his book. Because that's where we are now. Because carrying me to the couch to eat dinner, knees clasped to chest, carrying me to the bathroom, and me being a constant ball of pain are just normal. He brings me heat packs and rubs my back. He holds my hand and makes jokes about keeping the pain moaning down to a minimum so he can sleep. Abnormal normal strikes again but this time with a side of unrelenting gastric pain.

Two months until I see the specialist. Two more months of pain, if past months are anything to go by. Wait lists. Cancellation lists. Force the food. Feel the pain. Force the food and still lose weight. Force the food. Feel the nausea rise.

And we wait. I say we because it is we. My little family are waiting with me. They have a pain of their own in watching me writhe, and not being able to help.

Small victories are celebrated.

An excited, Hey you're out of bed Mum?

Followed by a wry, You must be cured!

We find joy where we can. My foray into the cinema of superheroes continues. Lets face it there's not a lot of thought required and a decent chance of a reasonably attractive hero or villain to satisfy. My youngest (though at 16 I'm not sure I can call him youngest any more) sat in bed with me watching Iron Man. Discussing the total waste of time, and crime against cinema, that was The Hulk, and who is the best Marvel character. It is hard to explain how much those times mean to me. That at 16 he's still willing to go out of his way to spend time with his mum. I treasure every moment.

I have surrounded myself with books and magazines that feed my soul and challenge my brain. That let me escape for a while. That don't mind if I read them in fits and starts, in a contorted mess of limbs. Poetry and classics. Philosophy and comedy. Each filling a needed role. I am surrounded by a husband and sons who love me just as I am. Who sit with me and accept me whatever comes. Who make me laugh when I least want to and who give hugs and silence when that is what I need most. I look out the window at the small park across the street. The galahs gather every night on the park and our front lawn. Squawking waves of pink and grey. Freyja comes and gently pushes her head under my arm, pushing and flicking, pushing and flicking until it goes high enough that she can dart underneath, and stick her face as close to mine as possible. I lay on the pillow with whiskers on my cheek and warm, smelly breath, regular and comforting, in my ear.

Life is.... beautiful, joyful, loving, amazing.

It's life. My life. It's not what I would choose. Not for me or anyone else. But it's still life. I have moments of wanting to fight against it. I have moments of despair. And moments, like last night, where I just want the pain to stop. Where I would give anything to have my old plans back.

But

Life changes. Even without the mark of illness it changes. It's not static. It would be less if it was. We grow and change and transform. We continue on, maybe not as we expect or want, but we continue on all the same. Tired and weary, we continue on.

I am a mess of conflicted thoughts and conflicted feelings. I want to cry and to embrace all around me. I want to hide away and force my way back into the world. I reach out and hold on. I reach out and lose my grip. I reach out and continue. Life is messy and contradictory and mine. F Scott Fitzgerald said,

The test of a first-rate intelligence is the ability to hold two opposing ideas in mind at the same time and still retain the ability to function.

I'll take that at the moment. I'm still functioning and I am still contradictory. I'll win and lose all on the same day, all in the same minute.

Do not go gentle into that good night
Rage, rage, against the dying of the light.

Dylan Thomas, Do Not go Gentle into that Good Night,1939.

I love that Thomas poem. I remember reading it aloud in my English Literature class years ago. It needs to be read aloud and with passion. It still strikes me now. The feeling imbued in the words. But, I think I'll take a gentle rage. A whispered defiance. A slow and steady persistence. A peaceful acceptance and endurance. A knowing that each breath is a sword drawn and shield raised. 

In the midst of the pain it is those little sparks that keep me going. That put me back together. Or at least hold the parts in place.

Michelle

NB For those who didn't grow up in the 80s, the title of the post comes from a nonsense song Star Trekkin'.

And yes, John Steinbeck was inspired to title his 1937 classic Of Mice and Men, based upon the Robert Burns poem I quoted.

Just a quiet little song today

You worry much about things you don't understand

But don't give up, if it doesn't go with the plan

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 $2,000, keep donating and hopefully we can reach $10,000.

Mindfulness, pain and the waiting game.

Last night I lay in bed, heat pack on my stomach, knees bent, the godsend that is Onsetron and Endone running through my system, trying to not let the pain overwhelm. Again. A mix up with medical records and referrals means that almost 5 months after it was first discussed I am still waiting to get an appointment, let alone see a specialist gastroenterologist in the hope of a review. In hope of a solution. In a hope to the end of pain, nausea and vomiting. A fresh pair of eyes on my complex problem. It would also be nice to absorb what I eat and have my pajama bottoms stay up when I stand rather than threaten to fall from my emaciated body.

If it's not one thing it's another with Dysautonomia. But this pain and gastric quagmire are the latest to take their toll. When in a flair, though does it count as a flair after months on end of relentless pain? Lets just say out of the collection of symptoms I experience, that this issue has come to the fore with a perpetual flaring vengeance. Either way, when my abdomin and all the organs and gooey bits it holds, decide not to play fair it triggers everything else.

I am tired of pain. I am tired of a lack of respite.

This year held a first. The first time I have ever called an ambulance. The first time I have ended in tears from pain in a long long time. When you live with pain everyday it takes a lot to reach that point. When you are forced to make a decision on pain medication. To take or not take. To keep it bearable means to also take in the side-effects that the most common medications bring. With a stomach that already doesn't move the idea of slowing it further is not one to take lightly. To see the confusion on the face of the ER doctors when I am lying curled up in a ball and pale from the pain and I say I don't want any of the opiate derivatives for pain relief. At the point where I'm not sure why I went in, except I was at the end of my tether and wanted someone else to take over. IV Saline and Fentanyl. An admission that they can't help me beyond trying to take the edge off the pain. An admission that there are no specialists or specialist services in the area that could even potentially manage me and my complexity. Resigned to the disappointment after so many years, but still you hold onto a nugget of hope that this time it'll be simple and regular. A dodgy gallbladder, a shitty liver, a nasty cyst on my ovary. Something that this once they can figure out and fix. The deflation as you roll out the sliding doors, a genuine "I'm sorry" from the doctors and something to take the edge off until you can see the specialist in the city. Whenever that occurs.

I am trying to breathe through it all while I wait. I have time to spare, might as well make the most of it. Mindfulness is my latest weapon in the arsenal. I've been doing it for a while now. But like all things I'm not big on continuing. Every time I think I've found my stride and I dare to plan my body throws a curveball and it all falls apart again. Then I am back to picking up the pieces. Back to trying to get the habits started once more. I'll persevere. What's to lose at this point?

Pain medications. Nausea medications. Heat packs. None of it is cutting it right now. They are my edgers. Simply taking the edge off the pain or the nausea. But always it is there. When I wake up in the morning. When I let the dog out. When I shower. When I do my teeth. When I try another bland food. When I go to bed at night. And when I lie awake in the dark.

And it's those night hours when I run through the exercises. Trying to focus, losing focus and struggling back again. Pain, pain and more pain. It's exhausting and yet I can't sleep. The ironies of chronic illness being many and varied. I feel myself reaching across the chasm, hoping, trying, striving, but sleep simply stares back blankly far across the void. I lie listening to the ticking of the clock. I hear the dog barking in her sleep. Our neighbours cat jumping on our roof. The knocks and cracks as the house settles in the cool night air. And I run through it once more.

Feel your feet. What can you feel?....

Ha! Already distracted. Neuropathy means that simple instruction carries much wry mirth. 

Focus. Focus. Focus.

Already distracted. I can trace the outline of my pain. It hasn't changed in months. The same area on the right of my abdomen. Endone required just for an ultrasound of the area. A clearly defined area of....well that's not clear. And so I wait and I lie awake at night focusing on the feelings of my body.

The feel of my body where it connects with the mattress beneath me. The feel of the sheets on my skin.

And wait and wait and wait.

Stuck in the cycle of not wanting pain medication, followed by chasing the pain made worse for my stubbornness.

And if the gastroenterologist has no answers. What then? I can't think of that. Not at the moment. I need to work this out. I need to believe in solutions. I need to believe in a time where I'm not texting Mr Grumpy in the lounge to grab some pain meds because I am in so much pain I can't move to get it myself. Trying to wait out the nausea as the Onsetron is so damn expensive. Losing more muscle mass because I'm not absorbing anything I eat. Losing more muscle mass because I am too weak to exercise.

I realised I can circle my thighs with my hands now. And then I stopped because it scared me a little how much my body has deteriorated while I wait.

Trying to manage, while I wait.

Trying to maintain hope, while I wait.

Trying to keep going, while I wait.

Watching my family worry, while we wait.

Watching the helplessness and fear on their faces, when I let on.

Hope and wait. Hope and wait. Hope and wait. Hope and wait.

Now where was I?

Get comfortable. Now. Feel your feet. Can you feel where they touch each other? Where they touch the sheet?. Do they tingle? Do they.....

Michelle

Throw your pain in the river

Throw your pain in the river

Leave your pain in the river

To be washed away slow

PJ Harvey, The River 

Huge PJ Harvey fan. I think I have 9 of her albums. Raw, haunting, and slightly off kilter you can feel every exposed nerve in every word and her blood flow on the strings of her guitar. And whilst Stories from the City, Stories from the Sea may be my favourite album, this particular song from, Is This Desire? is a favourite for it's haunting quality. These lines have always stood out in this song. And right now it would be so nice to throw my pain in the river to be washed away slow.

 

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 $2,000, keep donating and hopefully we can reach $10,000.