Rambles

[Image: a woman with pink hair and wearing floral pjs is sitting on the floor of her bathroom with her head in her hands. Behind her are a grey towel and cream tiles. To her right is the top of a small concrete dog doorstopper she was given many many years ago for her 18th birthday.]

I haven't been writing much but I need to get back into practice so I thought I might as well just empty my head on the page for a bit. Might clear out the cobwebs and help me to get back in the swing. The haze of exhaustion and pain meds is great for rambles.



It always amazes me that I can manoeuvre my body into positions that don't break my sleep. That in the depths of exhaustion I can roll and twist. Flop back and forth until that sweet spot is found. A precision that is broken when my breath loses its rhythm and my lungs sharply overcompensate. Or a slight change in the outside temperature draws the internal warmth across my body thanks to poorly insulated brick and steel. The barest caress of air molecules on skin and I am awoken, gasping and trying not to vomit from the pain. The micro-millimetre of difference between agony and sleep is breached and I am I am frozen.

Move or be moved and agony results. I don't speak for fear of tensing already hyperaroused nerves. I don't speak to further delay the pain that I already know must come. Caught in limbo, knowing that movement will both relieve and crush. The spot in my back and hip that only ever hints at healing takes every opportunity to let me know it is still there. Plotting. Biding its time. I brace, at least mentally, and commit to what must be. Tears and bile rise as I am once more impaled by pain. I mutffle the cry in my pillow as Mr Grumpy sleeps on oblivious.

Four days in bed a necessary evil for a body pushed beyond its limits. The exhaustion, nausea, pain, weakness must be managed. There's no choice in the matter. Fighting through isn't an option at this point. The lead up I played bad patient doing all I should not. Stopping when I know I should is not always practical just as it is not always what I need to maintain a sense of self. But there are draw backs.

Cantankerous. My body is cantankerous. It punishes me for pushing it beyond it's limits. When I acquiesce and rest, it punishes me further. And so my sleep is broken by pain now only relived by standing upright. Standing upright that leads to passing out and all the precursor symptoms that make my daily life a challenge and lead to rest days in bed.

The pain in my lower back and hip are always there though immobility bought about by an overstretched Autonomic Nervous System increases the intensity. I am stuck again where my normal Dysautonomia symptoms are slowly settling but not enough to make being up and about in the house a real option. Just enough for the restless agitation to start up. The unscratchable itch that make me irritable and terse. Offer me a drink or ask me about my day and I may rip your head off. Don't ask and I will poke the irritation like a sore tooth and run through expletives in my head. And the pain spikes as I shift my weight, or pick up my glass of water, or stay still and lose myself in reruns on the screen.

Pain is suffocation. Pain is dropping to your knees as your vision darkens. Pain is waves of nausea, a shot of bile to the back of your throat to make you gag and spasm, shooting off yet more pain. More more more.

Heatpacks. Gentle moves. Pain medication. Meditation. Layers of aid. Layers of nothingness.

I try to read and find myself at the end of the page not remembering a word. I try to write and the words struggle through the concrete thick sludge in my head. I can feel the ramble.

Its icy outside. Spring has begun with icy winds, rain, hail and in some parts snow. Our fledgling vegetables are throwing up flowers. Small purple pea pods begin to emerge. The chickens are all laying. Their egg song fills the air echoing up the sterile dark corridor created by the twin brick walls of our and our neighbour's homes. The sun peaks under the blinds in random five minute blocks. Sharp and blinding. I scroll through photos of surrounding snow fields. Tree ferns bowing as the tiny flakes force them into genuflection. Caramel coloured cows stand in stark relief against their pure white background.

My bedside table is piled with the detritus of illness. Small mismatched cardboard boxes their silver and plastic contents half spill across dark wood. Ear plugs, tissues and empty water glasses. A half-filled dosette box balances precariously over the table edge. The accoutrements of this life scattered across the table and off, reflect the irritation and weakness that have swamped the last few days. In between, the pink and gold hand cream, the small round metal container of lip balm gold embossed on green. A pile of to read books, small ceramics and decorative boxes that remind me of kindness and friendship. Small pieces of calmer waters.

I can see the edge of my shower through the ensuite door and strike a bargain. If I can shower. Just shower. I'll be happy. If I can slough off the film and feel the water on my skin I'll be alright for the next few hours. I'll roll myself up in soft pajamas and pop the top on my handcream so I can smell its warm fragrance. Tomorrow I might work up to slathering it on my fingers. I'll rub the blood back through resistant blood vessels and the mottle that is livido reticularus will retreat for a few seconds. The purple bruise that radiates up from my nail beds will subside and I will breathe in marshmallow and peach.

But for now. I want to feel the heat beat on protesting skin and muscle. I need to stretch as the heat finally infuses my icy body. To loose myself in the sensation and sound. Slump on my plastic chair, head resting on the glass. Submitting to the

The day continues to flow.

My son brings me the freshly lain eggs so I can feel their warmth in my hands.
My skin now smells like oatmeal and honey.
Warmth and softness filters through my being thanks to floral flannelette.

And the sharp edges are worn a little smoother.

Michelle

Maybe someday this pain will be useful.

Little sunbeam after the storm.

A photo posted by Michelle Roger (@michelle_roger) on Dec 29, 2014 at 12:39am PST

A while back I found myself running (okay lurching and stumbling, grabbing walls and chairs) into my bedroom to grab a post it and a pencil. I had an overwhelming need to write down a quick quote:

"Maybe someday this pain will be useful"

It comes from the video below by Jennifer Pastiloff (I also like her "I will not hide my shit nor will I hide my magnificence." No one should ever have to hide themselves.) A fellow blogger and all round awesome person Chris from pixie.c.d. had shared it on her timeline. In my morning pre-coffee haze I slumped on the couch and pressed play. I've never heard of Jennifer Pastiloff before, and she's a little full on for my laid back Aussie sensibilities, but there were moments in the video where I thought, "sing it sister." 

Maybe someday this pain will be useful.

I'm not one for the woo woo inspirational stuff. The vast majority of which I find superficial, unattainable, nails on a chalkboard. (This of course could partly be attributed to the sheer volume of perky memes I've been sent since I became ill. Just so folk know "Healthy mind, healthy body" is not the kind of meme you should send someone with a progressive genetic condition. You may be sent a sarcastic naked mole rat pic or something similar if you do.) But this one line stood out as I was watching.

What if everything I go through, all the shit, all the pain and the fear and the disappointment and frustration, all of it, is useful?

I don't go in for the everything has meaning line. Or that everything happens for a reason. Sometimes shit happens. No rhyme. No reason. It just happens. But I do sometimes think we can choose to find a use for what happens. And in a sense I think this is where blogging and writing fit.

While I would gladly have a do over for the last 8 nearly 9 years, or take a miracle cure like that! There has been good in there. I have met some of the most amazing people I now call friend thanks to this defunct body of mine. In particular, I met my best friend Kerri for who I will forever be grateful. But beyond that, in expressing my journey (there has to be a better word, the whole journey has been coopted by a lot of woo woo, but its all I can think of at this hour) it has given a voice and safe space to others.

In sharing the changes with my body and the way I feel about it warts and all, it has allowed others to express their own experiences, or simply feel not alone. The power of not feeling alone is incredible. It normalises an incredibly abnormal experience. It's a soothing balm for the spirit and relieves a burden whose bulk you often don't realise until it is gone.

In sharing the hurts, tears and doubts it lets others also express their own pain. A pain that is often hidden behind the permanently perky mind set that says you must always put on a brave face. And should you dare to say "it's hard" there is always someone who'll pipe up with a quick "well at least it's not...." or "it could be worse" to silence the speaker lest they make them feel uncomfortable.

In sharing the small victories and the laughs it lets others know that they too can have those victories and joys. In being ridiculous in the face of illness it can give others permission to also be ridiculous (a necessity to survive this life.)

All of this pain, all of the vomit and the medications and procedures and frustrations are worth it if in the sharing it can help one other person in some corner of the world.

Maybe someday this pain will be useful.

Maybe it already is.

Michelle

I will not hide my shit nor will I hide my magnificence. What are you hiding about yourself? Are you willing to be vulnerable? Quite often it's the things we try and hide that draw people to us. Are you afraid of "being found out"? Post all your thoughts below and feel free to share.I love you. You're enough.Xo www.jenniferpastiloff.com
Posted by Jennifer Pastiloff on Friday, 17 April 2015

When suck it up, becomes the only pain treatment you are offered.

(Frida Kahlo, The Broken Column 1944)

I sat on the floor of my kitchen yesterday while the coffee machine heated up. I played with the annoying patch of skin in my cheek that was shredded by a potato chip the day before. Fragile skin that tears when I so much as look at a piece of crusty toast. Just another small gift from the gift that keeps on giving, my body. It's my 'loose tooth', I can't stop poking it with my tongue, but it's also a bit of a tell.

I have been mulling over yet another disappointing medical appointment. You'd think the use of the words "glycerine suppositories, followed by the really unfunny dad joke, "But don't worry it's not nitroglycerine. You won't blow up!" would be the low light. But in truth that just made me think of the "Suppository of Wisdom," quote from our delightful PM and I had a momentary internal giggle. Instead, it was the moment that my continuing abdominal pain came up.

Once the joy of chronic constipation was out of the way I foolishly asked once again what could he suggest. And I was summarily told that it was not his problem, and that

Nobody is going to take ownership for that.

I just have to manage it with pain medication.

But not narcotics. Maybe I could up my pregabalin?

But other than that I have to live with it.

He'd wiped his hands of the whole issue.

So I sat on the somewhat sticky kitchen floor, stewing and further wrecking the skin inside of my mouth. A mix of anger, frustration and sadness flowing through while my tongue worked furiously at the shredded flesh in my cheek.

I still don't know where I'm at with this. The pain is constant. It is disabling and it is incredibly, mentally draining. There is something about pain that the medical field really doesn't seem to understand. It is stigmatised and wiped away like an after thought. I watched a timely Insight program about pain last night. The difference in the way patients and doctors discussed it was illuminating. Listening to professional athletes whose pain is managed and supported by the experts that surround them, equally illuminating.

Living with chronic pain and discussing it theoretically, are worlds apart. As one of the speakers said the conflict over the use of disease or condition is largely academic. Those who study and hold the power, fight over the wording, while those who live with it try to get by with therapies that partially work. Dealing with burning and stabbing and zapping and crushing and all the myriad ways it presents.

Out the front of my GP clinic is a large sign that says they will not prescribe drugs of dependence except for terminal patients. In the ED I feel an inherent sense of guilt when I need pain medications, although in their defence I have had little trouble in getting them prescribed when I am curled up in a ball of teary pain. Do I want to take pain medications? The simple answer is no. Just like I don't want to take any of the medications I am prescribed. But equally I know that those same drugs keep me functioning. That without them I would not be able to write this post, or stand, or walk the few steps to my toilet. Similarly, adequate pain control gives me the ability to drive 3 hours to the city for my medical appointments and to sit on the couch with my family without tears. But access is complex. And there is a pervasive idea of the drug-seeker, seen in every patient who has chronic pain. That those who simply don't get over pain and require ongoing pharmaceutical management are weak. Friends who have used pain clinics tell stories of dismissal and blame. That they are not trying hard enough when they don't recover, when I know the lengths they have gone to to try and alleviate their pain. And compassionate pain doctors who become the exception not the rule.

Is there a psychological component? Of course there is. The way we approach things affects how we perceive them. The Insight program demonstrated that. But it is not the only component. And whether it is a factor in maintenance or experience of the pain, or a consequence of the physical, emotional and psychological stress of living with never ending, poorly controlled pain, or a combination of all these factors is unclear. Even the neuroscientist on the program admitted it was extremely hard to treat and we don't yet understand all the various mechanisms involved. Sitting watching him demonstrate the peculiarities of our neural networks I am reminded that little has changed since I undertook my training. And that while interesting, it is how we transform those peculiarities from parlor trick into adequate treatment, that remains problematic.

Patients with chronic pain continue to be stigmatised and abandoned. We are put in the too hard basket or doctors throw up their hands and don't even bother with a referral to a pain specialist. Needing pain management is seen as weakness. And instead of using pain medications to manage pain we must negotiate a system and society that sees such a need as drug seeking and to be avoided. And so I get to cry myself to sleep from the pain on more nights than I want to admit. I manage as best I can with mindfulness meditation, heat packs, gentle yoga, pain meds when I can't take it any more, and spend a lot of time trying to simply suck it up.

Now I have to contemplate trying to find a pain specialist. I get to find one myself as apparently no one wants to take ownership of my pain. In truth I don't want anyone to take ownership. It is mine and I own my experience of it. But I do want someone who can guide me beyond "manage it with pain meds." I want to be able to function. And I don't think that's a lot to ask.

Michelle.

I've put this song up before as it always speaks to me about pain and I love the idea of being able to wash it all away in the river. If only.

Neuropathy is a large pile of suckage.

(A fakir performs the bed of nails trick, circa 1955. Peter Purdy / BIPs / Getty Images source)

Morning are the worst. I'm unsteady, nauseous, my blood pressure non existent, and life just seems to suck more. Not that I have ever been a morning person. Way back in the dim distant past that was my pre-sick life, I was a night owl who greeted mornings with dread and expletives. Now I have the added pressure of a body that dehydrates overnight until I feel I must look like a dried up prune (mirrors are avoided at this hour for fear I'll be turned to stone should I glance at one. So the prune thing is supposition. I may be more sultana than prune, who knows). I also have body that hates to be upright at the best of times and is very reluctant to move from a night spent horizontal when Freyja starts whining at the door desparate for her morning pee.

This morning as I stumbled into the bathroom I hit my knuckles on the door frame. Hard. So hard it made Freyja jump. I let out an instinctive yelp. And then realised it didn't hurt. Not a bit. I looked down at my red and swollen knuckles. I'd heard the noise. I could see the result. But nothing. No pain. Even in my muddled morning state I had a hmmm...? moment.

I flopped down onto the tiles and looked at my hand which is apparently so inept that it can't even register pain. Sure, I pushed on it and I could feel that. But still no pain. Another defective part of my body to add to the list.

Neuropathy for the win!

It's a weird beast. How can I be in so much pain in some parts and so little in others? Yesterday, I lay on my bed trying not to cry as the pain shooting through the toes of my left foot was so intense. Today, I whack my hand and nothing.

It's not the first time.

I cut my leg whilst shaving and left a blood trail round the bathroom. If I hadn't noticed the blood I would never have known I cut myself.

I've pulled rose thorns from my skin, only noticed because something was tugging on my clothing.

I burn myself on the stove on a regular basis. And the oven. I have been burnt by steam and by splattering oil.

Even when I sliced my thumb the other day the pain was not what it should have been given I had a 1cm cut deep through my nail and top of my thumb.

When I had my last Evoked Potentials test done, the tech kept asking me if I was okay as he kept turning up the device while I sat there unmoved.

Temperature sensation is long gone in my legs and halfway up my arms. I have a spot on my back that is still able to register temperature but no where else. If not for the raging red colour on my skin I wouldn't know the shower was too hot. And I've had burns from heat packs I didn't know had been overheated.

And yet, as I sit here typing I can feel my feet burning, only somewhat dulled by the Lyrica. I can feel the tasaring in my left foot. And the small spot on my lower back that feels like you are rubbing salt and ground glass into an open wound from just the pressure of the air in the room.

And the pain on the right side of my stomach that my gastro decided was neuropathic. It varies from knives, to Knives, to KNIVEESSSSSS!!!!!!!

One part the fiery pits of hell and tear inducing pain, another nothing but void.

I can't even be broken in a consistent manner.

Maybe that's why my doctors keep telling me I'm "special."

Neuropathy is a large pile of suckage.

Michelle :)

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

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.

Coming up for air.

Should you write when you are in pain, on pain meds and exhausted? Probably not. But when has that ever stopped me? I am not online a lot at the moment. Each time I think I am ready to get going again I am quickly disabused of that idea by the pain that leaves me gasping for air.  I'll get there again. I can see the emails piling up. Get on, reply to one, and down I go again. So bear with me. Pain is an evil beast. 

Down down down. Then coming back up for air. Before the slow descent back down. Tired. Pain. My back has gone out again. Again. Yet again. Once more with feeling. A feeling called pain. An emotion called frustration. A body melting in exhaustion.

One dramatic sneeze-cough combo courtesy of a bug and here I am flat on my back. Circling the drain and going slowly mad.

Stuck, confined, held down and immobile. Knowing that each day in bed equals ten trying to claw my way back to the normal that is decidedly abnormal. Pain medication to make life bearable. Pain medication to drop my blood pressure. Stand straight up equals some relief from pain. Stand straight up equals plummeting blood pressure. Rock and hard place. Pain and more pain.

Get up. Aggravate that disc. That one. Time and again. My Achilles heel in my lower back. One of many that made a break for it way back when I was still functioning. When I was still working and living. When life gave me a 3mth preview of what was to come. 

40 is the new 80. Or 32 back then. When I still believed in miracles and recovery. The stupidity of youth. The pleasant stupidity of a life before illness become my nine to five. And dreams went down as quickly as I slid down to the floor of my office.

Lying in bed. Resting. Letting the worst of the inflammation reduce. More pain meds. No more meds. Balance the meds. Keep the pain at bay. Convince yourself you can leave it a little longer. Just an extra 30 minutes. No, an hour. You can do it. Lets make it two. Convince yourself you don't need them at all. And then BANG, the chase begins. Pain. Pain that was at bay. Pain that if not tamed was at least placed in a cage. Pacing, agitated behind the bars. Back and forth. Tail twitching. Waiting for it's prey to get complacent. For that first weakness to appear.

It pounces. Rips and tears. And the chase begins anew. No time for recriminations. You must chase and chase and hope that you can get back to the moment when it was caught. Held and tied down with ropes and nets. Until you once more tell yourself that it's okay now. The beast is tamed. You can skip that next one. A hot pack, some meditation and a plucky can-do attitude are all it takes.

Then you begin to drown again. Lie immobile on the bed. Breathing through the pain spikes. To chastise yourself once more.

If only.

I should have.

They were right.

Tomorrow the work begins. Tomorrow the small movements. Like water on rock. Small and slow. Time the best healer. The carver of new paths and new backs.

But till then I will come up for air every now and then. To make sure I am still breathing. That the world is still turning. That there is something to return to. A small glimpse of light and hope. Come up for air to be reminded that it's okay to take the next dose. That rest and sleep are okay. Because pain untended is not heroic. Pain untended is talons and claws. Fire burning. Breath taken. Minds unhinged. And longer recovery.

I'm falling apart. And knitting together.

The broken whole revisited.

The broken whole recreated.

Till the next time.

Michelle

I want.

(Tree of Hope, Frida Kahlo 1946)

I want someone to come and massage away all the aches and pains. To release the toxins, of both body and spirit.

I want to feel my blood flow and the warmth suffuse my limbs. To feel that moment of release when a rock hard knot of muscle finally releases. When the burdens of the word are lifted.

I want to smell the oils. The lavender and sandalwood. The lemongrass and rosemary. The melange of fragrance, that infuses the air. The smell that weaves its way through your body from that first intake of breath. Permeating and cleansing every pore as it works it's way through the body.

I want candles. Soft warm light. A counterpoint to the harsh light of the world.

I want white noise. To shut out the whirring in my mind.

I want soft towels and warm air.

I want to feel the stress and the pain leave my body.

I want my strained nerves to stand down.

As the world is massaged away stroke by stroke.

I want to feel that inner hum where everything is balanced as it should be.

I want the world to leave. Just for a while.

I don't want to hurt.

I don't want to feel exhausted.

Mentally and physically.

Day after day after day.

I want to feel renewed, if even for an hour or two.

I want to lie quietly and absorb the moment.

I want to forget my body.

I want to forget the burden of keeping it all together. All the time.

I want to exist as another me.

The me that just is.

I want that me.

If only so I can remember that it exists.

That there was a moment.

When it didn't hurt and I wasn't broken. When I felt whole and at peace.

That my body could hum and not scream.

That I could just be.

I want that.

I need that.

Michelle

Pain Pain Go Away: Lyrica

(Note: As always I am not offering medical advice of any sort, and not recommending any treatments.  A brain fogged woman sitting on her couch in her flannelette pjs, taping away on a keyboard, whilst binging on hotcross buns and Easter eggs, is not a substitute for professional medical advice. All medical decisions, including treatment options, should be discussed with your primary treating physician.)

Pain has been my constant companion for many years now. It took me a while to work that out as over my last almost-40 years it became the white noise of my life. But of late the pain, or my ability to shut it out, has become worse. And neuropathic pain in particular has asserted itself.

Last year after my week long in-hospital investigations I was given low dose EnDep to try. At that point I was being tasered in my left foot nearly constantly, with the occasional super shock that would make me jump and cry out in pain.

“Have a sural nerve biopsy” they said. “It'll be fine”, they said. “We do it every day”, they said. “Sure there are some risks involved, but that's sooo rare”, they said. Pity that Rare is my middle name. Just like Special, Unique, Confounding and Intriguing.

Now six months later the good old sural nerve biopsy has left me with a traumatic neuroma (again not a common occurrence, but who wants to be like everyone else?). This little fella adds constant burning pain at the site of the incision and below to my mix. I am told that part of this is phantom pain (just like when a limb is removed) as the nerve itself has actually been removed. Pity the trauma of the surgery, subsequent infections, repeatedly splitting wound etc all got together to create new pain pathways in my brain. Fun times. Trying to undo or quiet these pathways is going to be my new goal.

To give you an idea of the level of pain for those who are lucky enough to not experience neuropathic pain. If you were to get road rash, dip the area in lava and then rub broken glass into the wound. That would come sort of close.

Luckily, I do have some variation in the intensity of the pain so it's not always at that level. But there are many a days that the breeze from a fan can bring a tear to my eye. Unfortunately, this isn't my only patch of burning or zapping, just one of the more recent additions. I remember a few years back when it started in my right toes. My now deceased cat sat next to me with her soft fur touching the tips of my toes and it brought tears to my eyes and a faint whimper to my lips. Not a lot has changed since that time, although the house no longer smells like cat pee since Monty went to the big cat scratcher in the sky. (I loved her but incontinence and dementia in a cat are not exactly endearing attributes.)

Along with distraction and desensitisation techniques (more painting and blogging and rubbing moisturiser into the site whilst trying not to scream) I am going to be trying Lyrica (Pregabalin). Luckily this year Lyrica came on the Pharmaceutical Benefits Scheme (PBS) here in Australia and I was a) finally able to afford it and b) my neurologist was finally happy for me to try it at a low dose with an option to increase (I am a sensitive soul when it comes to medications). 

Lyrica is an anticonvulsant used in the treatment of epilepsy, but is also used in the treatment of neuropathic pain with quite a lot of success. It's been around here in Australia for a while, but the cost has been prohibitive till now.

Like all medications Lyrica has side effects (fun things like suicidal ideation get a lot of paragraphs devoted to them on the MIMS sheet that came from my pharmacist. Not disconcerting in the slightest, no, no way, no how, hmmmmm......). I'm however, choosing to focus on the two that get the most air time on the patient forums: weight gain and drowsiness, which I am really hoping to experience. So far no dice with either but I am able to increase my dose so I am hoping that I'll soon get the magical trifecta of:

Pain Management,

Weight Gain, and

Sleep.

Wouldn't that be lovely?

(NB: I did check in the mirror again tonight and still my thighs refuse to touch. Maybe it's time to also double my dose of hotcross buns and Lindt bunnies. Come on weight gain!) 

Recently I read an article where a patient with Guillain-Barre' Syndrome (GBS) and consequent severe Dysautonomia was given Lyrica (six times my starter dose, though) and it attenuated all her Dysautonomia symptoms. How fabulous would that be for an outcome? Now I'm not going to get greedy or overly optimistic and add this to my list of potentials but lets just say if that were to occur I would be one happy little camper.

So here's hoping.

It would also be kinda nice if the the zaps up my legs, the bone pain in my left leg and right hip, the patch that feels like raw flesh on my back or the burning on my thighs would finally be controlled. Or if when Mr Grumpy touches me I don't grimace or wince. 'Cause that's kinda a passion killer.

It's not that much to ask really.

So fingers crossed. Besides as one of my old work friends suggested, if all else fails the name Lyrica does bring to mind some sort of Dysautonomia musical. So I could always write one of those. Purple compression stockings  and jazz hands would, of course, be compulsory. And there may be some spirit fingers action. And some sort of fan dance for our heat intolerant bodies. And a salty sea shanty. And......

Cheers

Michelle :)

How could I go past some classic Johnny Cougar/John Mellancamp/John Cougar Mellancamp/John whateverhislatestincarnation, on a post about pain.

And I've done my back, because I had nothing else going on: Day 6 NHBPM

Day 6: News-style post: Warning this post is written whilst on the good pain meds. No coherency, grammar or spelling guaranteed. Stubbornness means I'm not going to let a little thing like being flat on my back and whimpering each time I move, get in the way of NHBPM. Huzzah!

STOP THE PRESS!!!!! 

MICHELLE HAS DONE HER BACK. 

YET. 

AGAIN. 

(le sigh)

Dear lord, that's not much of a news story but it's my crappy story. You see I collect chronic diseases/disorders like other people collect salt and pepper shakers. Because one is just never enough.

I've been doing my back since my early 30's. One moment I was fine. The next I was in the middle of my pilates class and heard a sound that no one should ever hear from their back. 24hrs and 4 popped discs later I was told that I had the back of an 80 year-old-woman, otherwise known as Degenerative Disc Disease. Just what every girl wants to hear. A haphazard mix of physio, pain meds, hydrotherapy and crying into my Cornflakes got me through those months, but unfortunately did little to reverse the underlying condition.

Since that time I have popped multiple discs, suffered through sciatic pain more times than I can count, and been felt up by way too many physios. I had to laugh that my last MRI showed a bulging thoracic disc, but that was inconsequential according to the Radiologist. The near constant pain radiating from that same spot would lead me to disagree with his finding of inconsequential!

Makes me want to attempt a Sheldon Cooperesque head explodion on that particular Radiologist.

Today I am lying in bed flat on my back praying that the meds will at least take the edge off the pain, although all my past experience tells me it wont. Yet again I just have to wait it out. Until the pain becomes bearable and I can start the usual round of back exercises. You see adequate pain meds for discs that simply refuse to stay put and enjoy jumping on and crushing the nerves leaving your spinal cord, are pretty much non-existent. Nerve pain is a bitch. Be it the knife in your back or the molten lava of your feet. Or the near constant tasering and cattle prodding of various parts of my body. I've yet to find an adequate method of relief.

I live in pain daily. I have for years. I don't talk about it much as it's just one more thing on the list. I can't really recall a time when I wasn't in pain. From Rheumatoid Arthritis when I was a kid (thankfully I grew out of that in my early 20s), to severe endometriosis (which ended with a hysterectomy when I was 25), my frequently popping hips and knees and ankles and jaw and..., migraines and headaches, my stenosed and spasming jugular, my back, the inexplicable chest pain of Dysautonomia, and the neuropathic pain that has taken up residence over the past 6 years, my life seems to have always been tightly wound with pain.

I'm not sure why I don't really talk about this one aspect of my life more. I am very open about most aspects. I think in a sense in and out of all the various medical problems I have had over the years, it has simply become white noise. It isn't confined to one condition. Like fatigue it peppers pretty much all my various conditions. It isn't an entity unto itself.

And I have so many different types. When you head to a doctor and say it's not this type of pain or that type of pain, but a new or different type of pain they look at you like you are crazy. But say that to another chronic pain sufferer and they know exactly what you mean. My pain is just as complicated as all other aspects of my presentation. It's exhausting just thinking about it.

I know it's something I need to get better control of as pain spikes just make my autonomic symptoms worse. But where do I start? What first? Do I want more doctors? Or more meds? And do I really want to spend more money to be told by yet another doctor there is nothing they can really offer me?

Being chronically ill is an exhausting business. Every day my body plucks a new challenge from its repertoire. And every day I have to find a new way to manage it. Consistency would be a nice a change really. At least then, or so I tell myself, I could learn how to manage it all better. But for now I need to be able to think on my feet (or back, as the case may be) and be flexible and ready for any contingency. Some sort of rapid response, SWAT unit for what ever my body throws at me.

Or simply, as Mr Grumpy says, just tell this body of mine to get its shit in a pile.

Or even better, maybe I can just twirl around like Linda Carter/Wonder Woman. And Shazam! All the ill health is gone. At least in that version I might end up with some cool boots.

Michelle :)


Day I: Why do I write about my health.
Day II: Find a quote and use it as inspiration.
Day III: I don't know about this, but I'd like to.
Day 4: A chronic handbag
Day 5: Health Activist Soapbox 


I was going to add Johnny Cash's cover of The Nine Inch Nails, Hurt as the title is so apt, plus it's a fantastic song. But it's dark nature doesn't really fit today. I need a kickarse, sing it loud song to motivate me so I give you Basement Jaxx, featuring Lisa Kekaula, Good Luck.

Because I wasn't already feeling like a shit mother.

"Well at least you know who to blame", said the arsehole GP to my youngest after going through our (read my) genetic history. Because, apparently I passed on my shit genes on purpose. Because I knew that my faulty DNA was going to cause my children a life of pain. Because I'm a sadistic cow like that. Me and Joan Crawford, best buds in the Mummy Dearest club.

You know what's worse than watching your child in pain and being unable to make that pain go away? Knowing that you're the cause. It doesn't matter one iota that I never chose to pass my crap onto my kids. It doesn't matter that I had no clue about what was going on at the genetic level in my body when either of my kids were conceived. None of that matters.

I've known for a while now that I've passed my health issues onto my kids. I deal with it every day. I lay awake most nights beating myself up about it. Every time I see that little grimace of pain on one of their faces I grab out the mental whip for a good dose of self-flagellation. I sure as hell don't need some bastard with a stethoscope and the bedside manner of Charles Manson to rub salt in the wound.

Sitting, listening to a doctor or physio list off what is wrong with your child's body. Hearing words like "interesting", "special", "surgery", "I've never seen.....", is like being sucker punched again and again and again. Handfuls of referrals to specialists and for scans. A punch in the gut. Prescriptions for pain meds no little body should ever need. Another mental strip for my back.

All of this coming a day after him telling the school nurse not to ring me. Because he didn't want me to be stressed about trying to get to school as I'm unable to drive that far thanks to my own broken body.  Two sublaxed patellae at school and being wheeled to the bus in the school wheelchair, and he doesn't want to stress me. Needing to be carried by his brother up the stairs at home because he can't weight bare  and he's worried about me. Nothing can make that better. Nothing can assuage the guilt.

He shouldn't have to worry about anyone but himself. He should be able to know I'll always be there. I'll always come to get him. That I would slay the dragon and crawl over broken glass, to be with him. Not subjugate his own needs for mine.

And all I want to do is take away his pain. To give him back a childhood without pain and heartache.

But I can't.

So I put on the mask.

And I stuff down the guilt for later. When I can gorge upon it in the privacy of 3am.

I make hot chocolates in pirate mugs. And sit on the couch with him to watch re-runs of Myth Busters. I gather ice packs and crush up pain meds and mix them with honey to make them more bearable. I gather the pillows and make crap jokes. I hug him and tell him that I love him. That we'll get there. And, that it'll be okay.

And I hope that he believes me.

And maybe one day I'll believe it myself.

Being Sick Is A Pain In The....Well Everywhere

I don't think of myself as someone that lives with chronic pain.  When I list out my stupidly long list of health debacles, pain really doesn't get a mention.  I read about the pain some of my bloggy friends experience and I am in awe of what they contend with on a daily basis. 

It's really not until I'm talking to someone else about the myriad joys of being chronically ill and they mention certain types of pain, that I realise that hey I have pain, I have pain daily.  How did I miss this?  I take the pills, I grab the heat packs or the ice packs and yet somehow I missed the connection of why.  I have even had physio for pain, even when I was in hospital for Bob I also ended up in the pain group.  I know I'm dull but I didn't realise I was that dull.  Somehow I've managed to put that little gem away for safe keeping, and like my gold locket and my ipod head phones, I've forgotten where that place is, or that I had even had them.

If I think back, pain and I have been hanging out for a while.  When I was 12, I was diagnosed with juvenile arthritis.  Now there was a fun period in my life.  Swollen joints that were so painful even the gentlest touch felt like someone was beating me with a sledge hammer. Of course having my hands bandaged each day for support and protection made me so attractive to the opposite sex.  I was of course beating them off with a stick clasped gingerly in my white cotton clad hands.  Hell who wouldn't want to date the girl that smelt like Bengay and dressed like an extra from The Mummy (1932, none of this modern crap).

(What guy wouldn't want to date me, The Gore Master).

Of course being a teenager I loved being identifiably different.  Not only did I never grow boobs or have enough money for the right clothes, but I looked and smelt like a menthol freak.  I couldn't play sport, which if you come from a small country town is similar to coming out of the closet, or admitting that you enjoy opera.  I couldn't even pick up a pen to write, and this being the dark ages there were no lap tops or voice recorders.  Well at least none that didn't require a fork lift and a bunch of burly butt-crack revealing men to manoeuvre. 

My joy was further compounded by the fact that my pesky hips didn't want to stay in their sockets.  Get out of bed, hip pops out.  Stand at the sink doing dishes, hip pops out.  Walk down a step, hip pops out.  Breath, hip pops out.  Now days I'd probably get a EDS diagnosis, but back then it was a case of take pain meds and hope for the best.  Ahhh halcyon days.  Basically I spent my teenage years living with dodgy joints and keeping the Bengay, Tiger Balm, Dencor Rub and DeepHeat companies is business.  Add in the early anti-inflammatories that stripped your stomach, pain killers and the weird green plant, that tasted like a combination of cut grass and rancid dog turds that my mum forced me to eat, and my teenage years were a blast.

At about 16 Flo finally arrived much to my disappointment.  I remember being horrified at her arrival whilst I was at school.  Even worse was the fact that the only person available to pick me up was my brother.  So I got my period talk from my brother.  Mortified doesn't being to describe the feeling of your brother describing a period and handing you a pad the size of the titanic and a tampon, and describing how to use them.  Mind you after the embarrassment he sat me on the couch with a can of coke, fish and chips and we watched Christine (1983) and The Warriors (1979) on his cool new video player complete with state of the art remote control connected to the player by a cord.  Nothing like watching a killer demon car and NYC gang violence to forget the trauma of your first period.

Within months I was in regular excruciating abdominal pain.  After many years of being told it was just period pain and to suck it up, turns out I had endometriosis.  Back then there was little to no information available, and few in the way of treatment options.  I spent years curled up in a little ball bawling my eyes out thanks to pain.   Combine that with the lovely surgeries to fix it, which never worked, and the hormones that made me even more of the bitch from hell, well it was one big pain filled teens and 20's.  For anyone starting on that path let me just say demand good pain relief after a laparoscopy.  Funnily enough lasering your insides hurts.

Luckily I found a doc who was willing to whip out my lady bits when I was 25 so that pain is over for the most part.  I also learnt the joy of the morphine pump during those days.  Oh little pump how I loved you.  I still remember the doctor being worried that I would no longer feel like a woman once I was wombless, because being is constant pain made me feel like such a womanly sex bomb beforehand.  Amazingly I have managed to not feel like a man trapped in a womans body, despite the surgery.  Phew!  Medical douches!  When I think back on that time it always makes me think of the scene from The Life of Brian, with Stan/Loretta, "But he doesn't have a womb".


Obviously my body was so unhappy about breaking up with it's best friend pain that it thought it'd chuck in degenerative discs to liven things up.  The pain is pretty much permanent now.  It hurts like hell when another of those pesky discs decides to pop out, but other than that it's just white noise pain.  I do love sciatic pain though (all just adds to my 80-year-old persona), pain shooting down your arse is so pleasant.  Luckily those discs tend to pop out in groups of 2 or 3, and now have moved from my lower back to between my shoulder blades.  I think the words shit fight best describe my body at this point.

I still remember the first time they popped, ironically in my advanced pilates class.  First there was a pop, then a crunch, then an owwwwwwwwwwwwwwwwww.  Even better was that I had to present my doctoral thesis at a conference in another city.  I still don't recall what I said thanks to pain meds, but I did get the postgrad prize for research excellence so maybe I should pop more pain pills and my brain would come back. 

Now, courtesy of Bob, I add to my collection in the form of migraines, gastro and neuropathic pain, none of which really respond to traditional pain management.  I've been told that the migraines will end when Bob is finally under control.  Ha!  Gastro pain is again some of the Bob joy.  The neuropathic pain is due to SNAFU, which has no known cause to treat.  I'm pretty sure that at some point in the middle of the night my toes were stuck in a lava bath.  There's nothing like feeling like someone is rubbing crushed glass into your toes every second of the day. Fun, fun, fun.  I have also made the mistake of using a nail brush on my toes, this is a mistake you only make once when you have neuropathy.  I'm pretty sure I could have impressed a sailor with my swearing that day.

Probably my favourite part of the whole pain experience is that the meds best suited to controlling the pain, create a pain that can only be relieved by a prune juice enema delivered by firehose.  Medical science at it's best.  Those extra special herbaceous brownies are looking pretty good right about now.

Yet despite all this I don't think of myself as living with chronic pain.  Obviously I have a screw loose somewhere.  I'm pretty sure part of the problem is that when you have multiple health issues you end up focussing on the most pressing issue in the moment and for me that is now Bob related crap.  If I sat down and thought about it all I would turn into one of those psychiatric patients who sits in a corner all day long rocking back and forth.  Denial is a useful tool at times.  As my friend Michele from Dysautonomia Normal says, "Ostrich mode is my very favourite mode to be in". 

Luckily to balance all that, I do have patches of numbness.  Variety is the spice of lie after all. Though I must admit not realising my arm was stuck on the rose bush was a little disconcerting.  Especially when I yanked my 't-shirt' off the bush only to realise later on it was actually my skin and there was blood and a rose thorn sticking out of my arm.  But hey, I'm not complaining, there's gotta be a cool party trick in there somewhere and it sure as hell shits on pain.

So really when I look at it, I am the proud owner of the Ford Pinto of bodies.  No wonder Mr Grumpy is always saying that he married into the shallow end of the gene pool on that fateful day all those years ago.  Personally I blame my parents.  Geeze Mum and Dad, you could've put a little more effort into the making.  I know I was the last gasp and all but you could've at least put your hip into it, actually maybe that's where they went wrong.  Perfunctory sex is bad on so many levels.  (Lucky, thanks to my mum's computer phobia and my father's denial, they don't read my blog, not that I haven't said the same to them.  Sometimes it's worth the look on their faces).

Okay I'm off, time to celebrate the last day of my immature mid-thirties.  Tomorrow I am officially in grown up land of my late-thirties. Here's hoping that the only pain will be attributed to chocolate toxicity and some very nice fermented grape juice.

Cheers
Michelle :)