Showing posts with label Testing. Show all posts
Showing posts with label Testing. Show all posts

Tuesday, 5 November 2013

Single-fibre electromyography (SFEMG): The waiting game continues.


You know your life has taken a weird twist when you're lying down in a room with two neurologists, a needle hanging out the side of your face, your son looking on, and you're all giggling as the machine measuring the health of your nerves, chucks out a long, and loud, fart noise. But this is where I am. So far down the rabbit hole at this point that I don't know if I'll ever climb out.

There is nothing elegant or glamorous about the world of medicine. If you had pride back at the start, by year 7 it's long gone. You become resigned to a life peppered with small clinic rooms, festy waiting rooms, telling complete strangers the most intimate details of your physical being, and your personal space, and body, being invaded again and again and again. You have to learn to laugh at it all or you lose a little part of yourself with each encounter. And really if you can't laugh at your farting nerves what can you laugh at?

This past week I was booked in for a single-fibre electromyography (SFEMG) at a local hospital. The idea of having a needle inserted in the face with no anaesthetic is not exactly something to which one looks forward. But it is one of those things that sometimes has to happen. Part of the diagnostic process involved with Myaesthenia Gravis (MG, my latest lovely) is not only clinical observation and blood tests (ie the anti-MuSK and anti-AChR antibodies), but also fun things like the SFEMG.

Even resigning myself to the process it's still one that leaves you a wee bit stressed. To counter my increasing levels of "Argggghhhh", I took the obvious path. I dressed brightly and wore my Dorothy shoes. As you do. Yep, I face my fears with colour and glitter. And photographs. On this occasion, my eldest son and budding photographer, came along to document the process.


I'll have to give it to the two neurologists. They didn't bat an eyelid when I rocked up in my sparkly shoes. And the response when I asked if they'd mind if my son took photos? "Sure. That's not the weirdest request we've had." The mind boggles.

After my inept attempts to explain what has been going on, my son found a photo of my face on my phone which showed the start of the weakness and ptosis. I can't stress enough how important it is to record pictures and videos of these symptoms. So much about our disorder is intermittent and 9 times out of 10 they wont be present on the day of our appointments. But this way they were able to see what happens and pull it apart bit by bit.

It's strange to see your photo being divided up into it's parts. A miss-match of contractions, weakness and ptosis. What I just see as facial blancmange, they saw as the diagnostic motherload. It also allowed them to decide exactly where to put the needle to get the biggest bang for the buck.


Of course this meant that I had to have the needle inserted, not near my eye like everyone else, but in the muscle next to my mouth aka "we rarely do it here, but after looking at your photos it seems the best spot." Apparently, this is also known as one of the more difficult areas.



Having said that, the neurologist in charge of the needle was lovely and encouraging. And you need the encouragement. Trying to purse your lips for 20mins whilst a needle is moved around to find the nerve fibres is damn hard. Add in that the muscle on the left side of my month twitches like crazy with the slightest strain, and trying to keep it still is a lesson in futility. Thank goodness for my meditation practice.


I "So Hummed" the hell out of that test.


It's strange to 'hear' your nerves. The crackles and fart noises are not what you expect, and the latter make it hard not to laugh. Given the giggles that also emerged from the two neurologists it would seem that the pleasure derived from a fart joke, transcends all levels of society.


After all that I was met with a series of unexpected questions about my family medical history. Followed by tests of my hand strength, ability to make and release fists and a testing of the reflex at the base of my thumbs. Both doctors asked the same questions and finished each other's sentences. It was clear that something key had come up on the monitor. Something that had lead them both to the same diagnostic destination. My least favourite word "interesting" was uttered and a groan may have escaped my lips. Then there was a request to do an additional SFEMG on the hand.


Of course by now my interest was peaked. I may have had a worried "hmmm..." moment, but I agreed.

Well, that's not fun.


The hand version hurt more than the face one. Especially when they decided to hit me on, or just next to, the needle with the neuro reflex hammer. I mean I know that it was necessary, but OW. There really needs to be a safe word with all these tests. It's still a bit bruised and tender 4 days later.

And at the end of all this I am hit with the whammy:

"We discovered some abnormalities that were totally unexpected."

Totally unexpected.

Totally fricken unexpected.

*sigh*

Apparently whatever these abnormalities might be, they are indicative of a neuromuscular disorder but they wouldn't tell me what. They wanted my regular neurologist to interpret them in line with my previous history. They did say they may have finally found my cause, and that is big news. But.

Poker faces, boys. You need to work on your poker faces.

It's weird that I had become accustomed to the idea that I have MG. Emotionally, I'd come to terms with the diagnosis, as it all seemed pretty clear. I'd read up. Tossed up my treatment options and hovered on the edge of an online support group. And here I am again adrift in the seas of the unknown. From their reaction it was clear that whatever came up was not indicative of MG. What it is indicative of is, well, who knows. Now I get to wait until December to find out.

Waiting. Waiting. Waiting.

I think I have spent the bulk of the last 7 years waiting.

I feel like the kid in the back of the car constantly asking "Are we there yet?"

Thank goodness for the power of glittery red shoes. It would seem they bring joy not only to me but complete strangers in an elevator, fellow patients in a waiting room and even silver-haired neurologists.

Michelle

(Thumbs Up for Awareness blue thumbs combined with Dorothy heals
 has to kick Dysautonomia's arse) 

This one's dedicated to MG who may or may not be part of my package.

Friday, 28 September 2012

Well Mrs R, it seems you have a bad case of FUBAR.

Okay, so my neurologist didn't exactly use the word, FUBAR. She may have started our appointment by saying I was "special", but as any seasoned chronic illness patient knows, that is doctor speak for FUBAR. You see, out of options A (write your will now), B (don't stress, you've got a good 10 or 20 yrs of painful, untreatable, deterioration to write your will), and C (we have no fricken idea what you have, you weirdarse freak), it appears that I am a big fat C.

Don't get me wrong. I'm pretty happy to finally rule out some of the particularly nasty things which have been hanging over my head as serious contenders for a cause. Lets face it, avoiding a painful death any time soon features pretty high on the win side of the ledger. So a big YAY to no death. And a big old YAY to no long lingering nastiness whilst I'm at it. But a big loud and moist raspberry to no answers.

My neurologist is lovely. She's a top specialist in the country and I know she tried her best to work out what the hell is going on with this stupid body of mine. The testing she organised for me in hospital was very thorough and managed to rule out many hard to pronounce and scary diagnoses. But being told that you're one of a handful of her patients who will most likely never have a name or known cause for their illness, is a rather big blow. Turns out knowing that my current state of health was likely permanent, is a lot different to having it finally confirmed.

The one thing I know from my hospital stay is that I have seen all the top doctors. This was further confirmed by the epileptologist who brought his students in to interview me. As I listed off the testing I've had done and the doctors I've seen even prior to my stay, he was in awe. It's not often that a patient is so thoroughly investigated, being 'interesting' has some perks. So at least I know I've done all that I can do to find some answers. But conversely it means there is no where else to go. And frankly, that's a little disheartening.

I am left with a complex collection of weird unexplainable symptoms. Apparently, it's clear I have severe autonomic dysfunction, that my hypothalamus and pituitary are no longer working properly, that I have either a primary or secondary enteric dysautonomia, progressing small fibre neuropathy, some of my axonal sheaths are thinning, the list goes on and on. My body is clearly breaking, but none of that gives me a definitive diagnosis as to why. And with no definitive diagnosis, I have no treatment plan past symptom management. A cure is no longer a realistic option. I have no idea what comes next, though with six years of consistent progression it's a pretty safe bet that it'll continue to progress. But most concerning for me, is the fact that I don't know if this is something I can pass on to my kids.

I know I have a team of doctors who are all the top in their fields, who are willing to go above and beyond, are willing to investigate anything I suggest, and are equally frustrated. Doctors who take me seriously and work collaboratively despite all the obstacles my contrary body provides them. And thanks to that one fact, I've ticked all the testing/hypothesis boxes off my list. I know in this respect I am far luckier than many other patients. I now also know that even with all this it is still no guarantee of answers, or solutions.

Since yesterday I have alternated between, tears, anger, and numbness. The stress before yesterday's appointment, thanks to all the possible "what ifs" that kept playing through my mind, has taken a toll. Add in that I am in the midst of a bad run of insomnia and my coping reserves are a bit lacking. A long soak in the bath last night and just sitting in my garden today, feeling the earth under my feet has helped. I'm no where near finished processing what it all means. I'm at a crossroads. I've done all I can and I have to make a choice to accept that what I was told is the simple truth. That it is what it is, no matter how much I wish it were otherwise. Sometimes, shit just happens. 

As I sit here tonight I realise that my ideas of hope are evolving. Where once I hoped for a cure, now I hope for happiness and acceptance. And whilst the recency of this news means I am still an emotional basketcase as I sort through all the implications for my life and that of my family, I do believe that happiness is a choice you can make regardless of your circumstances. And if this is as good as it gets I will damn well make the most of it. Besides, happiness really is the best way to give my body the middle finger.

In the words of Peggy Lee,


" Is that all there is, is that all there is
If that's all there is my friends, then let's keep dancing
Let's break out the booze and have a ball
If that's all there is "


Michelle :)

Pretty sure this will be playing rather loudly on loop for a while.

Tuesday, 11 September 2012

The Waiting Game


Why must antibiotics smell like arse with a side of toe jam? That's what I want to know. Ugh. If efficacy is measured by malodour, these must be the most incredible bacteria killing capsules of all time. Yep. That's Right. I have yet another stupid infection in my ankle incision and it may be messing with my attitude (and cogitations) a little. Well that and the fact I am still playing the waiting game with my neurologist. Logically I know she is waiting on the final biopsy results to come back, before we can have our big sit down to discuss what was, or wasn't found. But damnit, logic is overrated, and right now I want to be pouty and stampy.

Waiting, waiting, waiting. This is not good for the soul.

I have tried soothing myself with copious amounts of chocolaty delights. In fact, as I type I am waiting on my bestie to bring round a tub of newly discovered chocolate gelati from a local organic takeaway. But even that's not doing it. I may be keeping Lindt in business. I may have a perpetual air of eu de chocolat, but it doesn't change my status.

I'm still waiting.

It is Spring here in Oz and the days are beautiful. Not too hot, not too cold. The air is fresh and the sunshine glorious. The yard is lush with new growth and if I squint just right, I can ignore that it is 90% weeds (I'm sure there's some cosmic metaphor in that). Though they are very healthy and very green weeds. Even the buttercups and onion weed look pretty. I can't even see the rather large Great Dane nards for the long luscious grass. Bonus. Though it does make moving around the yard a bit like a smelly and squishy game of Minesweeper. It is delightful to be in the warm dappled sunshine and listen to the very randy, local bird life. I can meditate outside now, or at least attempt a "So Hum" or two. Though having two dogs sit so close to me that I can feel their breath on my face, or worse still, snuffle in my ear, is not exactly conducive to finding my inner peace.

So I sit and curse as enlightenment eludes me, and still I wait.

I'm trying to ignore it as best as I can. I have even resorted to housework, a good indicator that I am in desperate straits on the coping front. Mind you I now have sparkly clean bedroom and bathroom windows. All the furry black mould that was multiplying and setting up a small feudal society on my windowsill is now gone. I still have yet to work up to the dust bunnies that seem to be reproducing at an alarming rate, but give me another week of waiting and they too will be gone.

And still I wait.

My body is slowly healing at least. I feel more normal sick, rather than the added blargh of the post-hospital/infection recovery phase. Most of the bruising is gone now. Just some sickly yellow/green patches, dead sexy right? The skin where the adhesive dressings were now carries some lovely rectangle scars framing my now lumpy incision lines. Another addition to the visual History of Me that I carry on my body. My thigh and stomach incisions are finally sealed over, which is cause for much celebration. And I no longer limp around the house. All things to be grateful for. But I look at my scars and once more I am reminded....

....I'm still waiting.

I want answers and I want them now. I need to process whatever the outcome and take the next step. Life is going on outside my health (eg, my son goes back in for surgery on the 21st) and I need to tick this one off the list so I concentrate on what is truly important. But I have no control. I can yell and stamp and curse, and tell my antibiotics I hate them (I'm sure they understand, and at least it makes me feel better) but it makes no difference.

I have to wait, and I hate it.

So I'll sit here muttering under my breath like the impatient, angry, crazy woman that I am. I'll sit in my garden and gorge myself on chocolate, and I'll polish my shower till it shines like crystal. And I'll wait like a good patient and slowly lose my mind in the process.

Wait, wait, wait,....why are we waiting, slowly dehydrating, oh why are we wai...ai...ting......

Michelle :)

And just because I need some Patience, and because Guns N' Roses always cheers me up, and because I can't help but do a little Axel Rose dance every time I hear this, well it just had to be shared.


Saturday, 11 August 2012

"What doesn't kill you, makes you stronger" and other BS sayings.


When I first became ill my doctors tried to comfort me/fob me off/make me feel whingy, with the "it wont kill you" line. And so far they are correct. I'm still not pushing up daisies, although some days I do feel like I should. I may look like death. I may even feel like a warmed up version of death on what is now a fairly regular basis. But I'm still here, kicking on, or crawling on, or lying elegantly on my bathroom tiles still breathing if not moving. Whatever the truth may be.

I realised today that unlike the ridiculous saying in the title of this post, I don't always feel stronger for all this crap. By rights I should be the Arnie of the illness world by this stage. But apart from a really bad attempt at "I'll be back", I am feeling a little on the lacklustre side of the ledger.

Monday I go into hospital for the week to try once and for all to sort out what the hell is wrong with this old body of mine. It's going to be a hell of a week. I made the mistake of reading over the neuro registrar's letter that lists all the things I need to be tested for and all the painful ways they are going to do just that. And frankly a little piece of my mind whimpered a pathetic "mummy", whilst it rocked in the corner.

I've known for a while that something less savoury is going on with my body. But compartmentalisation and denial have been wonderful bedfellows and I've been reluctant to kick them out. Now I am faced with having to take it all seriously. By the end of next week I could have an answer. Or not. I don't know which is worse. If I get an answer it means something rather nasty is happening to my body. Something that may or mostly likely, may not have a solution. Or even better may have a solution that I am no longer well enough to attempt. Both my neuro and the neuro registrar were very clear on that, again and again. No room for false hopes.

Or I can be poked and prodded, scanned and zapped, for a week and come out none the wiser. Stuck in the holding pattern yet again, with only a few extra nifty scars to show for my efforts. Which is worse? Knowledge or no knowledge? I'm not sure at this point. Though it would be nice to have a proper name for this damn shadow that follows me everywhere. It'd be nice to know what I'm up for, even if it's not that great. It'd be nice to have certainty once more, because I sure as hell have missed that over the last six years.

Because despite all the assurances that "it wont kill me" or I'll get some fricken' life changing epiphany from the last six years of my life, it doesn't make it any easier. I'm tried of being sick 24/7. I'm not all smiley, perky, moonbeams and sunshine. I'm not the brave sickie valiantly fighting the good fight and worthy of a Hallmark movie of the week. I'm just me, and I'm tired. I'm bitter, and I'm pissy. I want to say a big FU to the universe. Just for once I want an answer. Just for once I'd like to get it without pain and fear. Just for once I'd like to feel well. Because I really don't know what that is any more.

I don't want empty platitudes. I don't want someone to tell me it'll all be okay. Because it may not. Because that's not reality. Because none of those sayings mean a thing when I can't stand or stop the pain shooting down my legs, or am throwing up in yet another public loo. I want someone somewhere just to say "I hear you". To acknowledge that yes, this is shit. That no one should have to deal with this. And that it's okay to say just that.

I know people don't know what to say. That they mean well. But every time someone trots out those perky sayings, they might as well just tie a gag around my mouth. Because each one tells me to be silent. To not raise my voice. To stuff down my feelings. To not rock the boat. And most importantly, don't make others uncomfortable by my suffering.

I have fears. They whisper in my ear at night. Fear that I'll get an answer. Fear that I wont. Fear that the damn tests themselves could leave me with further pain. Fear that if I share these fears that I make them real. Fears that live alongside all my positive affirmations and distraction techniques. Fears that still exist even when I laugh and act the fool. Because that's reality. Because not sharing them, or pretending they don't exist, doesn't make them disappear.

So my emerald suitcase lies open and empty on the bed. And today I just want to crawl inside, zip it shut and hide from the world. Because I don't want to be strong today. Because this sucks. Because it scares those who love me, just as much as it scares me. Because I can't give them those empty platitudes. Because I wont lie to them. Because they deserve the truth. And if that truth is unsavoury and unpalatable, so be it. We will deal with it because there is no other choice.

We tell lies when we are afraid....Afraid of what we don't know, afraid of what others will think, afraid of what will be found out about us. But every time we tell a lie, the thing that we fear grows stronger.
Tad Williams, Storm (1993)

So I'll share my truth. I'll shout it from the roof tops. It'll be battered and bruised. It'll burn the eyes and hurt the ears. It'll make many uncomfortable. But I wont be placated. I wont hide. And maybe, just maybe, those fears will grow weaker.

Michelle

Monday, 3 October 2011

Apathy

I received a reminder for my now annual breast ultrasound two weeks ago.  For those of you who have read this blog for a while you'll remember that my breasts are demented.  For years now I have been popping out cysts and lumps like a crazy woman.  I had one radiologist tell me my boobs were a garden. I had my GP tell me they are Swiss cheese.  I can feel lumps and bumps.  Big and small.  New and old.

But...

It sits on the table.  Waiting.

I know I have to get it done.
I know I have to become a teaching tool once more at my local radiology office.
I know I have a hope in hell of detecting a new potentially bad lump in a forest full of pretenders.
I know my GP will yell at me yet again for my apathy.

But......

I am over being scanned, poked, probed and examined.
I have had my fill of doctors.
I have had my fill of pills and potions.
I am over being a pharmaceutical guinea pig.
I am over shelling out money hand over fist, for no answers, or solutions.
I have had my fill of bad news.
I have had my fill of no news.
I have had my fill of being unique, unusual, weird, strange, and all the other descriptives that come my way.
I am over being told "I have no idea", "there is nothing I can do", "I've never seen that".

I am over new diagnoses.
I am over no diagnoses 
I am over new symptoms.
I am over the word 'idiopathic', the fall back for doctors who have given up.

I am over a diary filled with nothing but doctors appointments.

I am tired.

I need a break.

But....

I will call the radiology office.
I will make the appointment.
I will call my GP.
And, I will make that appointment.
And I will take my medicine.

Because...

Just in case.
You never know.
Maybe this time.
What if?

And then apathy wins.
But I wont.

(find out more here)

*Update: It can be hard to maintain the medical momentum when you are chronically ill.  But sometimes you just have to suck it up and do it. So I made the call, and am now booked in to be scanned.  

Sunday, 19 July 2009

My life with Bob: The ravings of one slightly deranged woman in her mid-thirties living with chronic illness—composed over several long months.

Warning: May contain some "course" language if offended close your eyes or replace offending words with puppies, kittens, rainbows or lolly pops. May offend some Oprah fans but I do actually like her it was just one of those days, weeks, months well lets face it years.



This was written pre-blog when I just needed to get it all out.


PS: This one is rather long you may want to get comfy.



Fuck it. Fuck. Fuck. Fuck. Fuck it. Apologies to my mother (and mother-in-law), but this is the mantra of a shitty woman with a chronic illness. I’m sitting here on the couch with Oprah on the TV contemplating what my life has become. You know something’s not right when you’re having a “light bulb moment” and begin to think Dr Oz is the George Clooney of midday television. This is not what I thought I’d be doing at 35. I feel like I should be standing in front of a support group saying “Hi my name’s Michelle and I’m addicted to crappy daytime television”. Here I am a wife and mother of two not able to work despite years of study; not able to drive for more than 15 minutes; not able to travel for holidays; not able to attend my kids’ footy games; not able to be the me I’m supposed to be. The Michelle I was has been misplaced, stolen, lost; she’s in hiding somewhere with the elusive weapons of mass destruction. The one who sits here now is an imposter, one of the pod people come to life. I’m waiting for the epiphany, to find the inner beauty and “the gift” that all Oprah’s guests seem to have when they experience a horrific accident or terminal diagnosis. If these people can do it why can‘t I? No pressure right? Thanks Oprah for making me feel inadequate compared to these smiling, ecstatic people. I like to think that behind the scenes they are as angry and pissed off as me and what you see on the screen is really a combination of Prozac and tequila shots. Admittedly, I am coming to terms with this new alternative me, but it’s a slow process and I’m buggered if I’m going to smile happily and pretend it’s all shiny, shiny, shiny. There that’s my bitch for the day. Five minutes of woe is me between the loads of washing and when the kids come home from school.

It doesn’t matter what your poison is if you have a chronic illness and are in your mid-thirties you know how much life can suck. My joy is dysautonomia, otherwise known as that bastard vague syndrome which is hard to understand, even harder to explain and craps on your life or, as I now like to refer to it, Bob. Bob is like a crappy boyfriend. He turns up only when it’s convenient for him, forgets your birthday, buys “you” an x-box when you really want a bottle of Chanel no. 5, and takes you to Wolf Creek for your anniversary when you wanted to see Atonement. He’s the guy you’re embarrassed to introduce to your family and friends. The one you just want to forget but who you keep running into when you’re out on the town.

With Bob and all his like minded mates it’s a choice between tears and hysterical laughter, and I’m all for the hysterical laughter. I think when you have your dietician appointment lying on your back with your legs in the air so you don’t pass out, insane laughter does seem the best option. Life with Bob can be quite disheartening otherwise. Even when you’re doing all the “right” things you are constantly slapped in the face with the fact that you are ill and that you’re not like everyone else. Having worked in rehab I thought I knew it all but then you walk in the gym and notice you’re the only one there who wasn’t born during the Great Depression. You might as well have a flashing neon sign over you head saying “FREAK” in ten metre high letters. You suddenly realise how hollow all the words were when you told patients to think positive and remain motivated. Positive my arse! I’ll tell you about positive. Discussions about music or the latest celebrity news or where to eat are replaced by riveting discussions about support hose and bowls. I used to give in-services on determining cognitive capacity and write rehab protocols! This is when you come to the realisation that you’re one blue rinse and a hip replacement away from turning into an 80-year-old woman! It times like these when I feel it should be compulsory for physios to put Monty Python’s “Always look on the bright side of life” on loop for the whole gym session, or at least serve vodka jelly shots.

Logically I know it’s not the hospital’s fault or even the doctors’ or therapists that there is nowhere for patients in their mid-thirties. Support groups and rehab programs are for teenagers or the elderly, apparently no one gets sick or injured in between. There must be something really wrong with me to be so ill and incapacitated at this age. Traditional support groups don’t really work for my age group anyway. Who has time to sit around in a circle discussing their problems and singing kumbaya? I may be tarred and feathered by my psychologist peers, but this approach won’t get me through the next school concert or help me work out a plan to get to and survive the Myer sales without having to lie down next to rack of Wayne Cooper dresses. Even when trying to find information about Bob the majority of information is for teenagers and frankly tips about structuring my school day aren’t that helpful when trying to run a household, organise kids, be a wife and not pass out. Thank God for the yellow wiggle, aka Greg Page. When he came out at least people realised Bob was a legitimate, serious, life changing illness. I never thought I’d buy a copy of Woman’s Day in my life but thanks to his article I can now hand people a copy to read and I can sum Bob up with one line, “I have YWS (sounds exotic right?) aka Yellow Wiggle Syndrome”. It’s a sad indictment on society that we need a sick celebrity to legitimise what we are going through. I wonder, if Angelina Jolie came out to say she suffered PMS from hell would the world look kinder on we average woman and our monthly need to binge on chocolate, whilst sitting with hot packs on our stomachs, crying at the fluffy bunny story at the end of the news, then irrationally ripping off our husbands’ or boyfriends’ heads.

Life with Bob has been a roller coaster ride. Two years ago when I first got ill I had no idea what was wrong all I knew was that I felt and looked like death warmed up. Christmas 2006 was the turning point. I’d been ill a couple of times earlier in the year and never quite felt like I ever got back to where I had been before. Then kaboom!!! My life went into free fall. All of a sudden I was weak, fatigued, permanently nauseous, sweating like there’s no tomorrow, shaking, uncoordinated, feeling like I was about to pass out and on the really crappy days throwing up or actually passing out. Even thinking was hard. One of the biggest problems with Bob is that it is a relatively rare and unknown syndrome that can mimic a number of other disorders. Depending on who your doctor is you may be diagnosed sooner rather than later but it really is potluck. Even supposed specialists either had no idea, told me it was all in my head or that there was no hope. I think my favourite (insert large amounts of sarcasm here) specialist was the one who told me that it was all in my head. The one comment that sticks in my mind is “when a woman your age comes in with these symptoms it’s always in your head”, who says doctors lack bedside manner? With that he sent me out the door, diagnosis of “stupid, emotional woman” stapled to my forehead. I don’t think I’ve ever been so upset, insulted and incredibly angry all at one time. I couldn’t even speak when I left and I just cried for hours. The reality is as a woman you know your body and you know when something is wrong. Coming from a psychology background I was well aware of how thoughts and emotions can affect physical health, and it was a shock to meet a supposed specialist who could twist it so appallingly and was unable to understand that maybe I was so upset and stressed because I was so physically ill. Perhaps the one good thing about being 35 and educated was that I was unwilling to accept what this archaic and chauvinistic pig of a man said and sought out a second and eventually third opinion.

Among Bob’s many charming features is testing overload. I think I’ve had just about every test known to man over the past two years. I’ve been poked and prodded, scanned and measured to the nth degree. I honestly think I have given my weight in blood over this period. Dignity is rather hard to find when you’re strapped up like Hannibal Lector trying not to throw up on the doctor whilst passing out. When it comes to Bob the tests can get scary especially when you keep trialling drugs and lifestyle changes and nothing works, this is when the panic begins to set in. In many ways Bob is a diagnosis of exclusion, both medically and socially. The basic blood pressure and fainting issues are there but they can be caused by so many things. It doesn’t help that I had worked in a neurology setting. I had already had a number of sleepless nights wondering about possible diagnoses but had never had the guts to say them out loud. When my cardiologist mentioned the dreaded words “it could be MS or a tumour” followed by a number of other possible nasties I missed everything else she said in the appointment. Thankfully it wasn’t any of the real nasties but it was a horrible couple of months to find out. The fear I felt prior to and after the MRI was incredible. Despite my fears it was very routine for the neurologist and she was rather blasé about the whole thing—almost dismissive. I was sitting in her office with my incredible husband holding my hand, trying not to throw up with dread and she just said nope not MS, no tumour, no….., and started a voice recording of her letter back to my cardiologist. It was strange to feel so relieved and so let down at the same time.

How do you explain to someone that not getting a serious or life-threatening diagnosis is disappointing? After months of living with uncertainty and the fear and the doubt it generates, you start to long for a concrete diagnosis no matter what it is. How do you plan your life or explain your illness when it is this shadow being that can’t be measured or understood. I’m a rather practical kind of person. If I know what it is I can educate myself, I can plan my life; I can do what needs to be done. I can be legitimately ill. Even all these months later having a diagnosis (although still no concrete cause to treat) I still have that bastard’s comment sitting, stewing in the back of my thoughts, “it’s all in your head [you loser]”. I often wonder if he realised how soul destroying such a comment can be especially when you have such a complicated and unknown condition. Even if I had been suffering from Depression such a cold and callous attitude could hardly have been considered therapeutic. I always thought that part of the Hippocratic oath was “first do no harm”. All I can say to him is karma’s a bitch buddy.

Uncertainty is bad enough for me but it seems to be excruciating for everyone else. All your friends and family want to know what’s wrong and when you are going to get better. Even relative strangers want to know or to give you “helpful” advice on what is wrong with you and what you should be doing. When the uncertainty persists for any length of time fatigue sets in, not for you but for all the bystanders. Apparently you aren’t meeting their ideas of legitimate sickness. They begin to look at you as if you’ve just admitted that you sacrifice small furry animals to Beelzebub in your spare time. “What, you’re still ill? Why aren’t you better? Why don’t you know? Surely the doctors must know something? Can’t you see someone else? What’s wrong with you?” Friends and family start to drift away. Weekly visits or phone calls become fortnightly, then monthly and then it becomes months (if you’re lucky) between contacts. They are happy to be supportive initially but then it becomes tiresome. Their lives are busy. You and your weird arse, all in your head “illness” are just too much work. You aren’t the person they knew, the person you’re expected to be. Admittedly, hanging out with me and Bob is not exactly a laugh a minute and frankly it can be hard work, but you expect more from the people you once held dearest. Only the strong and true are willing to put in the hard yards to stay in your life. These people are like gold and should be cloned and bottled to be given to every person with a Bob in their life.

In general, your relationship with Bob makes you a social pariah. Bob is a cantankerous soul. He stops you from participating in life. You can’t go to the movies, you can’t go late night shopping, and you can’t spontaneously stop in for coffee or go out for dinner. Even talking can be difficult when your blood pressure is so low you can’t find the right words or slur so much you sound like you’ve just finished a bottle of Smirnoff. Stringing a simple sentence together becomes akin to creating peace in the Middle East. You can’t even follow a fluffy conversation about Britney Spears and her fondness for going commando.

You get to the point where you have to create what I call your “pretty sick” face to survive. This is the face you develop to reassure all the other people in your life that you’re ok and therefore they are ok. This is the Disney or Oprah version of illness. It’s when you pile on the spack filler to cover the dark circles and pasty skin. Put on nice clothes and push yourself to the point of exhaustion to alleviate the fears of others. You do your hair, put on your lipstick and smile like one of Oprah’s orgasmically cheerful, yet tragic guests and say “I’m so happy, this bitch of an illness has allowed me to find my authentic self”. If, God forbid, someone should see you in the depths of misery because you can’t get out of bed and can’t hold a glass of water, then you are forced to spend what little energy you have reassuring them you are ok and that you are sorry for making them worry. The energy required to reassure others is more exhausting than words can describe.

There is an unspoken pressure to be the poster child of “pretty sick”, heroically defeating your illness with a smile and wink, whilst jogging for a cure, attending charity balls, balancing your home life like the Cleavers, and being a role model to which all other sick people should aspire. Once you do this you need never reassure anyone about how “well” you are. Simple. Right? Whilst I understand that family and friends worry because they care, I really don’t have the energy to hold their hand throughout. Sometimes you just want to be selfish and say, “Let me cry, yell, swear or jump up and down. Let me wallow in the misery of my life for one day. Sit there quietly and just let me be”. Sometimes all you want is silence to vent and someone to give you a silent hug either figuratively or literally. I don’t want suggestions, I don’t want to hear how you wish you could help, and I don’t want to hear how this is impacting on you. I can’t look after you when I’m barely looking after myself. Just take responsibility to take care of you and let me concentrate on me. This is one of the times I am so grateful to have my incredible husband and kids in my life. Out of everyone they are the ones who truly let me be me. They accept me pasty face, purple feet and all. If I’m so sick I’m lying on the floor with my feet up on the couch they simply walk around me or ask if I want a drink. They accept that I can’t always do what I used to do, that I am often vague and weak and can’t always attend different functions. They let me be sick without any fanfare or stress. That is truly precious!

My husband David used to affectionately call me “Big Brain” and I’ll admit to a certain secret smugness about my level of intelligence in the past. Well didn’t that come back and bite me. Words were my life. I even won an international prize for a conference presentation. Now I have days where I sound like I’ve been smoking pot for the last 10 years. I look in the mirror and think who the hell is this pasty faced, fog brained woman looking back. Bob is obliging one day and stubborn and narky the next and some days if you’re really lucky, it’s an hour to hour crapfest. Normal is not a word to be associated with Bob. Basically Bob is a Bitch.

Where once my bag contained perfume, Myers catalogues and articles on the differential diagnosis of various dementias, I now carry a bottle of salt, a puke bag and contact details for various specialists. I wear granny pressure stockings and shorts in the middle of winter. I live in air conditioning, as I wilt when the temperature even approaches a balmy 20ºC and put ice packs on my neck at physio. I drink litres of water each day and chug salt. Living with Bob is not glamorous. Your mother’s advice to make sure you wear fresh underwear takes on a whole new meaning when you have to consider whether the checkout chick at the supermarket may get an eye full if you unexpectedly go arse up. There’s nothing quite so uplifting as having your son say “hey mum you have grandpa feet” when he spies my swollen purple feet under the bench. Perhaps most cruelly of all, having Bob in my life I’m supposed to avoid alcohol (although sometimes the repercussions are just worth it). What sick bastard created such a crappy, life altering disorder that also won’t let me have a glass of Sauvignon Blanc to make it all bearable? As I said Bob’s a bitch.

Every woman has a close personal relationship with guilt. If you’ve popped out one or more rug rats then you truly know what I’m talking about. Guilt is one of the unglamorous side-effects of pregnancy, like the haemorrhoids and excessive flatulence that our mothers never warned us about. When your milk comes in you get a simultaneous lifetime supply of guilt to boot; would you like fries with that? You beat yourself up constantly for all your failings as a mother. We all compare ourselves to little Johnny’s mum. You know her. That woman with perfect hair and coordinated outfit, who attends all the excursions, bakes cookies for class, iron’s little Johnny’s uniform perfectly, makes the perfect nutritional lunch and is a clone for Mrs Brady. God how we hate her! However, introduce her to Bob or one of his mates and little Johnny will be rocking up (late of course) in yesterdays grotty jumper and unmatched socks, with a jam sandwich and piece of plastic cheese in his lunch box. Bob adds a whole new level of guilt to motherhood. Having Bob in your life means that you simply can’t attend every performance or sporting match; that you forget to hand in the excursion notes or to wash the uniforms. It means you can’t drive your child to a play at a friend’s house or take them to the show. This is when guilt goes into overload. You don’t need anyone else to tell you should feel guilty you “know” you are the world’s worst mother. I truly realised the impact Bob was having on my and my family’s life a few months after he started hanging around. My eldest had just started high school and we had an information night. We got as far as the end of our road and I had to pull over I was shaking so much and could barely focus on the road. We sat on the side of the road for 30 minutes with my head between my legs until we could drive back home. It was the start of the kids missing out. They have put up with a lot over the past two years. It scared the hell out of them and I was too ill to either fully realise or comfort them. It was only a few months ago my youngest could finally tell me that he had thought I was going to die. It felt like someone had reached in, ripped my heart from my chest, threw it on the ground and stomped it into oblivion. I just wanted to reach out and wrap him in my arms and never let go. A ten-year-old (or as he was then, eight) should never have to deal with such adult issues, the guilt was and is overwhelming for putting him in this position. Even my stoic eldest was suffering in silence; he just didn’t want to worry me. A 14-year-old shouldn’t be worried about whether or not his mum will be able to drive home safely from his bus stop. He should be thinking about girls and friends and being a normal obnoxious, self-absorbed teenager. You don’t choose to have Bob in your life but you beat yourself up every day for the burden you are placing on your family since he came to stay.

The second layer of guilt revolves around being a wife. I could never have survived the past couple of years without the support of my husband. As cliché as it sounds, he really has been my rock. It’s hardly been all beer and skittles since Bob came to stay. I know he gets frustrated but for the most part he doesn’t say much. Bob has changed who I was. Previously I was independent, enthusiastic and enjoyed going out. I could balance work, study, kids, husband and home whilst meeting a girlfriend for fizzy coffee on a Wednesday. Now he has to take time off to drive me to appointments and our social life is a distant memory. Sadly, even our parents have more exciting social lives. He’s had to take on more of the afterschool and weekend activities. He gave up a job he loved and took on one that crushes him a little bit more each day to be home and able to help out more. The start of this year I had to give up work which means we are now on one wage. One-on-one time is limited because I’m always so exhausted. I feel like the world’s crappiest wife. I feel like a failure. I’m so not holding up my end of the bargain. I know we vowed for better or worse but bloody hell a little bit of better sometime soon would be nice. I’m sure he thinks he got the booby prize. Despite all this he’s always there when I need him. How many guys would quietly and without fan fare put on thermal underwear and a jumper so as not freeze whilst I sit under the air conditioner, in winter? He accepts that Bob has made me a freak. When I’m lying on the couch trying not pass out he quietly comes lifts up my legs and sits on the couch next to me or unobtrusively holds me up so I can stand at my auntie’s funeral. Who would drop everything and drive two hours to come home, because his wife is crying on the phone barely able to get up off the bathroom floor? In some ways it would be easier if he yelled and got angry at me at least it might lessen the guilt. I love the fact he pays me out for my brain fog and accepts that I may need to stop in the middle of the shops and put my head between my legs in full view of all the other shoppers. I love the fact that he doesn’t treat me like a sick person; he sees there’s more to me than Bob.

Anyone with a Bob in their life knows what its like to lose their identity. Suddenly you become the sick person. Suddenly you become Bob. My husband and kids are the only ones who really seem to see beyond Bob. Family and friends no longer ask you what you’ve been up to. They ask about Bob. Every encounter begins with comments on how you look. “Gee you look pasty today”. “Gee you don’t look so pasty today”. Everyone seems to be on the look out for signs of illness so they can tell you about it. It’s as if they think you don’t actually realise you’re sick so they see it as their civic duty to tell you. Do they really think I have no mirrors in the house or that I seriously think I look like Heidi Klum today? Maybe they think you are trying to replace heroin chic for pasty chic? It’s easy to get sucked into the Bob conspiracy. You get so involved trying to find out information. Your life revolves around medical appointments, tests and drugs. With Bob you have to watch what you eat and drink, you have to watch your fatigue levels, the temperature, make sure you do exercise but not too much, you have to organise and plan and hope that Bob gets in line with the program. Basically Bob becomes the centre of your universe by necessity. Trying to maintain even the tinniest sliver of you is bloody hard. For me I hate being a patient. I know no one likes it, but I truly detest and resent Bob for making me a patient. I’ve always been on the other side of the desk and frankly I was happy there. Being a patient is disempowering, choice is no longer a word that belongs to you. Other people are making all the decisions and when you run into a delight like my chauvinistic bastard you just want to scream. Even having worked in the health system I had no idea about Bob. You trust that the person on the other side of the desk knows what they are talking about and actually cares more about your wellbeing than paying for their golf fees. You need to get to a point where you shout “NO MORE” and take back your control. This is how I got to my current cardiologist. Anger is healthy when it gets you the care you need. She was the first out of numerous doctors to actually ask me how I was coping with the kids and being sick. I nearly jumped across the desk and hugged her (well maybe dragged my sorry body out of the chair and slowly stumbled over and collapsed on her with happy exhaustion). She was the first to see there was more to me than Bob and that Bob was a legitimate illness. If nothing else, that made me feel better than I had in months.

Maintaining you is hard when Bob is in your life. For the most part you can be ill in private but every now and then Bob raises his ugly head in public. I dread these moments. When you’re trying not to throw up or pass out in the local ice cream shop the last thing you need is a gaggle of people asking you if you’re ok. Of course I’m not ok! I’m pasty and sweaty, my head is between my legs and my face is an inch away from an old bandaid, a piece of used chewing gum and a decidedly iffy short curly black hair. I’m using every ounce of concentration not to throw up on your shoes so don’t ask me questions or you’ll wear it. I live in a relatively small community and privacy is a rare privilege. Everyone soon knows you as that weird, pasty, angry woman from the ice cream shop who nearly threw up on their shoes. You have become Bob. Well meaning family and friends begin to treat you like an invalid. I have a message for everyone. I do not need to be followed and watched. I don’t need to sit in a special chair. I don’t need to be asked if I am alright every 3 seconds! This in and of itself is disempowering and may result in me beating you to a bloody pulp with the special chair.

I am in constant conflict with Bob to remain independent and damn it I refuse to let the bastard win. (Crap, I’m starting to sound like one of Oprah’s guests. I’m going to have to change channels and start watching other quality daytime programming such as Days of Our Lives or Wife Swap). Independence when you have a Bob in your life is not the same as independence pre-Bob. Independence now is being able to do the grocery shopping by myself without having to sit on one of those grotty stacking stools half way through or leave my full trolley in the isle. Independence is making dinner even if you have to sit on a chair in front of the stove. Independence is 10 minutes in the garden weeding whilst sitting on a step. You need to grasp these events and hold on for grim death. So don’t be surprised if I bite your head off when you tell me to “sit down and you’ll do it”. Some days it’s worth pushing yourself to exhaustion just to complete a job even if you have to spend the next two days flat on your back. Finishing that section of garden bed (even if it grows over with weeds over the next two months) is worth it to feel normal. Rationality does not come into play here.

Old Michelle is still missing in action, although small parts are starting to re-emerge. Weirdly little bits of the pre-study/work/kids me are also starting to come back. I’ve always loved to read especially the classics but work and family commitments left little time for reading for fun. Recently I’ve started reading again. It’s a slowwww process with a fogged brain but I’ve managed to get through Anna Karenina and Crime and Punishment. Have started War and Peace which may verge on stupidity, as at this rate I may be 80 by the time I finish. I have always loved cooking and this is one of the few things I can still do. My family is used to trying weird and wonderful concoctions. My new drugs have stopped my shaking for the most part so at least using my butcher’s knife is no longer like playing Russian roulette with my fingers. Small scale gardening has also become possible. Whilst before I would be mowing and chopping and planting, now I’m stoked when my herbs grow in the pots outside my back door. I’ve even started drawing and painting again; it may be closer to pre-school finger painting than a Rembrandt but no one else needs to see it.

I was shattered when I had to finish work. I put off calling my manager for weeks while on LWOP because I was so upset and I knew that once the words were out I couldn’t take them back. I cried and swore. I cursed Bob with every name under the sun. It was the last straw. I never thought I’d get over it but on my good days I hardly think about it any more. Financially the guilt is there in spades but the work itself is no longer in my everyday thoughts. Who I thought I was and who I am now are very different people. I think I’m still in mourning for my picture of me and what I thought I wanted. There are many stages to grief and there is no clear process or time line. It’s not like “Step 1 feel sad, Step 2 feel angry…….Step 10 closure”. It’s sad, then angry, then numb, then angry again then, pissed off, then accepting, then sad, then angry….and so on. Just when you think things are starting to balance out, Bob steps up with a sucker punch. Hence my philosophy of hysterical laughter. When you have a crap day you need to find something to laugh about (especially when a glass of wine is not an option). As a wife and mother it is not practical to pick up the kids looking and acting like an extra from One Flew over the Cuckoo’s Nest. I have a penchant for Monty Python. You can’t watch The Life of Brian or The Holy Grail and not laugh at the absurdity of it. Alternatively, as any woman with a pulse knows, any movie with Johnny Depp has remarkable healing powers. The other thing that has made Bob bearable is that we recently adopted a dog. He is the best, if rather smelly, medicine. When I’m sad or sick he comes and sits next to me. He’ll put a paw on my arm or put his head on my lap or next to my head. He seems to know when you need that extra bit of love. You can whinge to him to your hearts content and he just sits there and listens. Being a puppy he too is mildly insane and that ensures laughter at least once a day. Every person with a Bob in their life should have a dog.

During my two years with Bob I’ve thrown up in the shower, cried at physio, the doctor’s and at work, and had to lie down in the back of my car on the side of the road. I’ve had to lie down on the floor of my office with my feet up in the air (wearing a skirt, classy!) and had my legs go out in the middle of the shopping centre. I’ve had to take spare clothing to work due to the very lady like sweating and chugged salt during a school concert. I’ve sucked as a mum and a wife. This is Bob in all his glory. I am still hopeful that somewhere in a galaxy, far, far away that my cardiologist will have an epiphany or someone will develop a drug and I can put a hit out on Bob. In the meantime I’m going to revel in being one of those bitter, pasty, insane, “ugly sick” people that will never be invited on to Oprah. Although, if she is offering free tequila shots in the green room……..