Showing posts with label Guilt. Show all posts
Showing posts with label Guilt. Show all posts

Saturday, 28 April 2012

Vlogging live from Crazytown


In a moment of insanity I thought that a vlog would be easier to do than a blog post. Rambling at a camera surely has to be easier than trying to combine thinking and typing, right?

Note to self: don't listen to yourself when the dumb is strong. Also avoid playing with sharp objects, hide all hair scissors and don't go near the stove. And for the love of God don't go to the vet and see the cute pictures of the kittens that need a new home. They are like soft furry crack and you come damn close to falling off the wagon.

Anyhoo. Here's the rambling, slurring result of about 6 billion takes. Enjoy.



Alternatively I give you Kate Miller-Heidke's fabulous Facebook Song (does contain swearing)


Cheers
Michelle :)

And yet another shameless plug for votes.
 People's Choice Award

Saturday, 5 November 2011

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.

Thursday, 3 March 2011

Processing

To  post, or not to post?  That is the question.  It's hard some days to decide what to write about.  How much of yourself do you share?  Are there topics that simply shouldn't be put out there?  I need a Blogging for Dummies, that sets out neatly, the okay and not okay topics.  Not that I'd probably read it.  It would just end up sitting on the table collecting dust and coffee cup stains.  Or end up as another brick in my fall back plan for fame, ie to get onto Hoarders.

I'm pretty much of the school that says sharing stories makes them more bearable.  Blogging as therapy.  I think it works, and it's way cheaper than the regular types.  So often we hide what we think is shameful, or too personal.  I know for myself at times, pushing the 'publish post' button, feels like I'm standing naked in the middle of the crowded room.  Exposing yourself can be a strange melange of pee your pants terrifying and exhilarating.  It can be freeing, as you find others who have shared your experiences and support that comes form unexpected quarters.  And finally those mountains can be seen for the molehills they truly are.  So I'm going to take that plunge once more and hope that if nothing else, it helps me sort through and organise my personal maelstrom of thoughts and emotions.

We all have fears.  Over the last few years I've had new ones crop up.  Ones I never thought I'd have to confront.  I don't usually voice them as, illogically, it feels that to give them voice you give them power and that increases the chance they will become manifest.  Stupid I know.  My practical science background laughs derisively at my foolish illogical side.  But the reality is that voiced or unvoiced they sometimes come true.   Sometimes life is simply completely out of your control and you have to find a way to deal with what comes your way.

As my own health issues have progressed over the past few years a new fear has crept into my mind.  Although Bob is not currently thought of as a genetic disorder, except in very specific forms, it can run in families, as can some of my other health issues, and there is an increased risk of yet other cluster illnesses.  I have spent many a sleepless night worried that some part of my defective genes will be passed onto my children. 

As a mother you have an instinctive drive to protect your children from harm.  Every tear, every disappointment, every hurt, rips out your heart.  Knowing that you may be the cause of that hurt, is more painful than words can describe, and there is no salve.  And that is the path I am now treading.  Over the past year my youngest has been on the doctor roundabout as his young body has started to have problems.  Over the past year I have come to the realization that my broken genes have been passed down to those I hold dearest.

I've had a little pit of fear stewing in my belly.  Every time he has felt nauseous.  Every time he has run to the loo.  Every time he looked pale.  Every time I have seen him limping along.  I have seen a little still from my own teenage movie.  And it has scared me.

Even without a doctors diagnosis I've known for some time that he has developed the same gastric issues I had as a teenager.  The same food intolerances, which are now confirmed by recent tests.  Similarly, I've know that his poor little joints are like my own.  I know the pain he is feeling only to well.  Yet despite all the evidence I have held onto a little glimmer of hope that I was wrong.  That it was indeed "all in my head".  But it was not to be.   And I know that what he (and to a lesser extent my eldest) is experiencing is due to my own faulty DNA.  And the guilt is overwhelming.

I've been good at stuffing those pesky emotions down.  But sitting in the phsyio's office listening to words like "sublaxation" and "bad collagen" has hit me harder than I ever thought possible.  I was totally unprepared.  Those words said out loud about my child, were like a clarion bell.  It was real.  More real than I have allowed myself to believe and it's like I'm now standing under a never ending waterfall of guilt.

I know it's not truly my fault.  As my best friend pointed out (and I am so glad I have her voice of sanity in this matter) it's not like I decided to pass this onto my children.  But it doesn't stop the feelings of guilt, rational or not.  In my good moments I know the truth, but in those other times........ 

A mother's job is to protect her children, and this feels like I have failed on the highest level. I know only too well what it's like to be a teenager with health issues.  What it means physically, socially, and emotionally.  And I think in many ways it makes it better, and conversely, far far worse.  It's a challenge to keep perspective and stop my own baggage from interfering with what I need to do now.  To not transfer my own emotional memories onto his little shoulders.

Last night I strapped his ankles in a vain attempt to keep them in place for his cricket training, knowing full well that it was more placebo than panacea.  I spent the drive back home bawling my eyes out as grief and guilt took turns at beating the crap out of me.

I am in that horrible acute phase, where the the roar of my emotions is deafening.  I have argued irrationally with Mr Grumpy, as my own insecurities and baggage have taken control.  I  have yelled at the dogs and screamed abuse at the washing machine for not washing quickly enough.  Even the discovery of the empty coffee container feels like a deliberate personal attack.  It's my irrational side in all it's glory. 

I want to punch something.  To yell and scream.  Or grab a bottle of tequila and hide under the covers until I can view the world through the same beer goggles that transform the world to hilarity and beauty.  But I'm a mum, and mums don't have that luxury.  We have to hold our shit together.  Stuff down our fears, put on our calm faces and tell them it's going to be alright, even when it's not, even when that little voice inside is screaming in our ear.

There is a creeping fear that this may be indicating the arrival of Bob in his life, but I can't face that just yet.  I'm going to put that one in a box, tie it up in chains, and bury it deep down.  I'm not ready to tread that path.  Though I know that if the time comes, I will.  But until that time I shall say a prayer to every deity known to man that he will not have to take that journey, that I can spare him from at least that burden. 

I know that logically, at the least, I can now find him the help he needs.  I can give him the gift of believing him when he says he is in pain.  I can support him in the multitude of ways that I didn't have as a child, when these disorders were not recognized and the title of hypochondriac was readily bestowed by the medical profession and family alike.  I know the power of a diagnosis.  I am glad that it gives us a starting point from which to tackle these issues.  But none of that changes the fact that I cannot give him the gift of good health.

My own health issues mean nothing in the face of those of my child.  I want to have the magic wand I had when he was little.  Where I could make the monsters disappear with my miraculous mummy super powers.  Where I could kiss his bumps and scratches better.  Where he knew without doubt that I would keep him safe and protect him from the harms of the world. I want to wrap him up in joy and peace, and let him live in a pain-free world. 

So I will take a breath.  I will dry my tears and patch my heart.  I will put on my practical hat.  I will book the appointments.  I will take the steps.  I will don my armor and fight for him.  I will help him find the path to acceptance of his physical limitations.  I will help him discover that his true gifts are not the ability to kick a ball, but lie within his spirit and generous heart.  I will do all in my power to heal and soothe.

And I will try to find that place where I can be okay with all of this.  But at this stage I am still processing.

Michelle

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……..