Sunday 17 January 2010

Always Something There To Remind Me.

I found my last work diary today. Why I still keep it I don't know, though I do have some hoarding tendencies. In truth I've always been a bit of a masochist. Nothing like a little self-flagellation with a 365-page reminder of a life that no longer exists to pass the day. Might as well put up a side-by-side picture of myself and Heidi Klum on the fridge, to wipe out my clone fantasy. This diary, like my work bag that sits at the end of my bed gathering dust* and desk piled high with research articles, only serve to remind me that life hasn't exactly turned out how I'd planned. This of course doesn't sit right with a girl who took anal to the extreme. Okay that sounds wrong, lets go with control freak extraordinaire. I think I would have made a good despot. Plan. Control. If I want something done right I'll do it myself and you'll all do it my way. I call it Type-A. David calls it the martyr gene. Something that is autosomal dominant in the females of our family, along with big butts and no boobs.

Open up to any page and it's reveals the typical Type-A personality in all it's glory. Every minute scheduled and accounted for. Meeting A, 45 mins (why did I never feel comfortable saying 1hr to incorporate the the post-meeting chat and recovery coffee required to maintain sanity). Phone call to family of patient B, 5 mins. Phone call to Patient C's GP 15 mins, Review Patient D' MRI, 10 mins......... Lordy I was a loser. I'm surprised anything could get out of my sphincter it was shut so tight. I was the freak that would stay an extra 2 hours of unpaid overtime if a patient or their family required. I took the extra 5 referrals that I really couldn't fit in my paltry official work hours to make sure patients who needed an assessment were seen. I took on what should have been other people's jobs to make sure they would be not only completed, but completed to my anal specifications. I wish I could have been one of those staff members who arrived right on the dot, then got a coffee, checked emails and started work 30 mins later. That did the minimal work required to meet their KPIs. Had every last second of their designated lunch break each day and were out the door as soon as the hand on the clock ticked over. Stupid Michelle, Stupid.

When I look back at January that year the entries begin to jar. GP appointment 9:30am. Blood Tests 11.45am. ECG 3:30pm. EEG 4.45pm. Day after day after day. This I realise is when Bob first made his presence known. So right about now is our official three year anniversary. Happy anniversary Bob. Though if I'm honest he'd probably been lurking around the fringes of my life for a while before.

So what do you get the guy that changed your life? Leather, according to Wikipedia. That's actually probably not a bad one as it's been a three year bondage fest and I've obviously forgotten the safe word.

When I think about the last three years it's all been a bit of a blur. Varying degrees of sick punctuated by my single-handed funding of the entire medical system in Australia. It's amazing what you get used to. My health 'normal' is very different to that of the rest of my family. For those lucky enough not to have experienced the pleasantness of day-to-day living with Bob, I will try to clarify it in terms you can understand. The 'normal' or good days are akin to having the flu. The bad days are akin to having the flu, a migraine, food poisoning, conjunctivitis, haemorrhoids like bowling balls, athlete's foot, passing a kidney stone, a hangover, boy cooties, and a swim too-soon-after-eating side cramp, all at once.

Looking at those pages does bring home how sick I was. Not just sick, as in not feeling well. But sick complete with capital letters, bold font, underlining, italics and multiple exclamation marks. I thought I'd been sick before, naive fool. I had no idea what sick was.

One of my pre-Bob illness highlights occurred during a return trip from Singapore. Dodgy last meal in a little restaurant down a dark alleyway was not the smartest of moves an hour before an 11 hour flight back to Melbourne. Severe food poisoning on a cramped QANTAS flight was definitely not how I had envisioned my trip home. I had visions of me circa-1950s glamour, glass of champagne in hand, movie on screen, passing the time in witty conversation with my fellow passengers. But no, instead it was me with my own loo, rapidly ridding my body of its internal organs down the blue waters of hell.

A personal highlight was achieved during a stop over in Adelaide. The aircraft came to a halt. Passengers stood up to gather their luggage from the overhead lockers and then an announcement came over the intercom. "Excuse me passengers. This is Captain So and So. We are awaiting Quarantine's arrival to check an ill passenger. I'm afraid you will all have to take your seats until we have clearance by Quarantine services". Oh who could that be? I could feel the hatred from my fellow passengers boring through the seats behind which I was hiding with my puke bag. Despite my best attempts to crawl into a corner and die quietly, it was obvious that I was the hideous individual keeping them on the sardine can that was the plane. They looked at me like I was that little monkey from "Outbreak". Truth be told that monkey was a whole lot prettier than me by that stage. I'm pretty sure I looked about as attractive as a old piece of chewing gum that's been stuck to your shoe for a week. Quarantine finally arrived after an eternity.

Burly Quarantine man: "Have you been to a farm? Have you been exposed to poultry?"
Me: "Well just at the markets."
Burly Quarantine man: "No. Okay everyone can get off".

Sleep safe Australia, Quarantine services at their finest. I wont bore you with the details of the hour I had to drive myself home from the airport. Let's just say I made it, but I may have come close to overdosing on Imodium. I realise now this adventure was just a cake walk compared to what was to come.

That black A4 diary is a log of my voyage with Bob over that first fateful year. For some reason it makes me think of Gilligan's Island and their "3 hour tour". Initially I though I had a virus that would pass. Then I realised it wasn't passing, and was in fact, getting worse. Then it dawned on me it may actually be something serious. Not in the the usual overly dramatic hypochondriac moments where you tell everyone you are dying because you have a cold. But I actually began to realise this wasn't just a bit of a bug and started to panic about the real possibilities. I don't advise getting really sick when you have worked in neurology, not only do you think it's the end, but you know all the possible ends it can be, and how to research them.

The page where I met the doctor from hell who told me I was a just a nutter, is empty except for a single note about an 11:30 appointment. I feel like I should have written it in red pen, highlighted it and surrounded it with big arrows and line after line of, "Warning. Warning. Danger Will Robinson. Danger". Maybe the emptiness of the page reflects the total emptiness I was left with that day after I had cried myself dry.

A month in there is another innocuous entry indicating a cardiologist appointment. Again I was left with the same emptiness after being told that I could try one drug, more water and salt, and if that didn't help there was no hope. Emptiness with a side of numbness.

In between these entries are increasingly more frequent entries of one word, 'sick', simply scrawled across the page. One word to describe not being able to drive or lift my head without nearly passing out. One word to describe my body slowly descending into a cascade failure. One word to describe fear and anxiety. One word to feel hopeless. One word to scribe those soul destroying words into stone, "it's all in your head".

Flipping through the pages I see yet another one line entry. "Cardio. 2:30. Hawthorne". Three simple words that jump off the page. These three words should be scribed in gold and surrounded by stars and fireworks. Three little words that restored a little of my sanity and hope. Three little words that lead me to a gem of a doctor and a diagnosis of Bob. It probably sounds odd but I feel like I should take out that page and stick it in a frame. Not because it formally gave me a diagnosis of a weird disorder that no one had heard of or understands, or can really treat, but because uncertainty is the worst diagnosis you can have and it was finally cured.

October 31st that year was the last day I officially worked. It has the traditional anal list of what needs to be done before my plan of 4 months unpaid sick leave. All checked off of course. Anal girl would have it no other way. I was still hopeful back then that I would have a triumphant return to work on the 1st of March. I had visions of myself St George style, slaying the dragon. I'd ride back in through those sliding glass doors on my magnificent stallion, the Bob beast slain, his bloody head hanging from my clenched fist. But that was not to be.

I have tried to maintain a normal life and deal with Bob but it can become a tad tiresome. I lived by those lines by Dylan Thomas:

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

I raged and I raged until I was hoarse. Bob raged louder and longer and won the day. First it was work. Then it was my doctorate. Independence went by the way-side and social life, well I know I had one at one point but I can't quite remember what it looked like. When I look back at those halcyon days, I like to think I was a mix of Pearl S. Buck and Elizabeth Blackwell, with a good dose of Carrie Bradshaw (for the shoes of course), Holly Golightly (ahhh the little black dress) and Elizabeth Bennett. (Hey it's my blog and I'll be as delusional as I want).

Now it's three years later and I am still battling the Bob beast. I have had small triumphs. I rarely pass out now, always a bonus. I am no longer dating my porcelain lover due to medication side effects. Now we just get together for the occasional coffee when Bob's feeling frisky. Unfortunately, other than that it's the same old, same old.

The hardest thing for me to deal with is the brain fog. That's not to say the continual nausea, sudden bp drops, lack of blood and oxygen to the old brain, dizziness, heat-intolerance, purple feet, and the rest, are a joy to live with but the brain fog hits home for me. Brain fog reminds me like a slap across the face, that I am sick and that I am now officially disabled. Once upon a time I had a brain. I know I did. I have the certificates to prove it. I duxed my Honours year in my Psychology course. I was accepted by all the doctoral programs to which I applied. Won an international neuropsychology award for my research. Wrote treatment and medico-legal guidelines for the biggest health service in the state, whilst managing a complex case load and developing my department. Now I have trouble recalling the name of the thingy that makes the bread turn brown, and have days where I can't construct a sentence to save myself. If my body has to be broken I think it's only fair that I get to keep my brain. Regardless of the physical restraints, you can live a thousand different lives in a thousand different worlds if you have your mind. Freedom and independence reside in that rather ugly, floating blob of grey. I miss it. I don't know if I'll ever come to terms with the peat bog that now resides between my ears.

Three years down the track and I have yet to have any epiphanies like Oprah's guests. I am not flying the flag for Dysautonomia, organising dinners or fun runs. I haven't found my true path, or God, or Allah, or Buddha or any other spiritual awakening. I am not one of those sick people that other sickies should admire and aspire to be like. I am grumpy. I am shitty. I pout like a two-year-old. I refuse to accept that I am sick. I say "screw you Bob". I live in denial or avoidance, whatever takes my fancy on the day. If you offer me pity I am likely to tell you to stick it where the sun don't shine. I tell inappropriate jokes and have taken sarcasm to a fine art. If you tell me to sit down, put on a jumper, or have a lie down I will beat you to a bloody pulp with my pathetically weak arms even if takes me a year and a half. Maybe next year I'll find that bloody epiphany. Though I'm starting to think I'm doing a Moses, 40 years in the desert and all. Then again I don't know if I could live with myself if I was to become perpetually perky. Maybe I could just take some of our dogs happy pills, and live in a blissful fantasy land, stop peeing in the downstairs rumpus room and stop eating the couch cushions.

So happy anniversary to Bob. Three years of wedded anti-bliss. I think I'll buy myself a leather riding crop and saddle to celebrate our anniversary. That's gotta at least give me a fighting chance of taming him. No chaps though. I have enough on my plate without chaffing and my butt definitely needs to be covered.

The raging leather clad Michelle :)

* Finally found some of that intestinal fortitude you always hear about and cleaned out my work bag. It is now safely hidden from view, ensconced behind a wall of clothing. Now there will be no accidentally views to make me sad. Tip for the day don't leave your work bag at the end of your bed for two years because you are too emotionally enfeebled to deal with it. Muesli bars do not keep well for two years in your humid work bag. Nor do the mints that somehow managed to escape their tin and start their own little hairy mutant colony in the bottom left hand corner. Cup of Soups on the other hand will survive the nuclear apocalypse.


  1. Congratulations on surviving the last three years. Next time I get cornered at a social occasion by a "friend" reeling off a seemingly endless litany of woe I'm going to tell them all about Bob.

  2. OH my goodness, I laughed my butt off, I cried... Well written, beautifully expressed. You write what so many of us cannot put into words.

  3. Three years has been a long time to deal with dysautonmoia, you are an inspiration to many, you give us a voice and remind us that we are not alone out here!
    I had your anal work ethics as well, and dysautonmia has given me a better perspective of what's important. I still arrive at work an hour early, but I no longer feel miffed if another teacher comes in to talk and I have things on my checklist that need to get done. I enjoy the momments, the work may or may not get done, I do what's required, and what my heart is led by.
    Thanks for another heartfelt blog,

  4. Three years is a long time to suffer with Bob, you have been an inspiration to many. You have given us a voice and the comfort of the fact that we are not alone out here.
    I am also very anal at work, but dysautonomia has put things into perspective. I still arrive to work an hour early, but I no longer feel miffed when a co-worker comes in to talk and I have a checklist of things that need to be completed. I relax and enjoy the momment.
    Thanks for another inspiring Bob blog,
    Always inspired,

  5. I think you gave of yourself enough back then to last most people a lifetime of work. Now its time it seems for you to discover a natural born talent for penmanship.

  6. So cool to read from someone who understands the anal work ethics. haha. And for giving us all perspective on what really matters. It means a lot to me and others out there dealing with an invisible SOB.


  7. nearly snap, ive been three years may, although ive have periods of illness since the age of nine.

    you capture what its like to have this unfashionable, unknown illness. when you tell someone you have p.o.t.s its ugh! its a bugger of an illness to get through. im in the misdt of the brain woolliness, what really gets to me at the moment is the inability to exercise, which i miss so. keep writing.xxxx

  8. Ellie - welcome. I am considering a little 3 year party, may have to break out the half glass of champers. Your blog is so well written, very visual and a unique blend of sensual without smut, very hard to do and very rarely found. Do you write elsewhere?

    Lucy - Thanks. I love your recent 'monologue'. That damn 3 year itch hits hard.

    Michele - You inspire others to you know :) I'm so impressed that you keep on working through this. So many of us seem to have been Type As before getting sick. I'm sure there's something in that if I could get my mind to work enough to understand it.

    Achelois - thanks for the kind words. I hope things are looking better at your end. Thinking of you.

    Alice - I'm sure that with so many of us living this it has to become fashionable at some stage. Though I fear it may be something along the lines of the really bad trend that was the the 80's bubble skirt or those harem pants that can only be worn by the emaciated models on the catwalk.

  9. Thanks for sharing this...funny yet sad....raw yet real. And informative because I learnt about dysautonmoia.

  10. I've just found your blog (via a comment you left at The Bloggess) and I have to say that I find your ability to maintain a sense of humor despite it all amazing. I, too, have that Type-A thing going on, and after leaving work today irritated that people don't care as much as I do, I found your blog. Thanks for putting it in all perspective for me.
    Thanks for putting yourself out there and teaching me about Bob.

  11. Emma K - glad you got something out of my rambles. I think all illness should be approached from a place of sarcasm and shatoffedness.

    GrumbleBot - Thanks fro stopping by. We Type-As have to stick together. I like the Bloggess. She takes sarcasm to the heights it deserves.

  12. Fascinating and touching Rusty, so much so that I won't take the opportunity to tease an Aussie that they lost the Ashes to the worst English cricket team I can remember.

  13. Gaz - Welcome. I loathe cricket. For me it's pretty close to watching grass grow, especially the test matches. I do however live in a home of cricket devotees who treat me like the family halfwit when I express my disdain.

  14. You and I should swap I live in a country that despises cricket and can't believe I would pay good money to go and watch a test match!
    Add to the mix being Scottish and supporting England!

  15. As someone who has spent the last 11 years dealing with some haunting vague illnesses, I understand how you feel with Bob. And I commend you for the lightness you bring to the situation. Your writing is beautiful and I will stop by here for inspiration :)


  16. Welcome Annie and thanks for your kind words.

  17. That was so sad, so why did my rear just drop 5 kg? Laughing too hard. And I know how you feel about "that day" when someone finally finds the missing piece and you get what you need but then realize that it will still never go back to the way it was. Glad you can find the humor in it all, helps the rest of us as much as it seems to help you. Now my problem is apparently I've lost muscle and not fat and my bummed out coccyx won't go back into position again. yay! So today I'm joining you in the sore bum club. double yay! horrid pun. and I get to be anal because my butt is LITERALLY broken. Have fun making up something for that, lol! Is a great excuse when you really shouldn't be getting up.


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

Note: only a member of this blog may post a comment.