Friday 31 July 2009

Lost. One Brain. If Found Please Return.

Brain fog moving in from the west, and it's moving fast. Time to get out the fog lamps and sound the horn to warn anyone who's in my vicinity.

What the hell has happened to my brain? I'm sure I had one at some point. Though with the way my memory has been of late I may be mistaken.

Currently I'm having a menage à trois with the pantry and the milk, and occasionally the laundry. Wait does that that make it a menage à quatre? Hmmm....too early in the morning, too much thinking involved, lets move on. Mornings are not my friend. I usually wake up in a pea souper that can last till lunchtime, and when I'm really lucky all day. For some reason I can't get it together with my milk. I'm either looking for the milk in the pantry, putting it in the pantry or even in the laundry. I don't know why it's so complex but it baffles me most mornings. This is what my brain has been reduced to.

Apparently I am only getting about 50% of the blood I require to my brain, or so the doc's tell me. I think. Maybe. Not sure. Better ask David, he's my back up brain. At least I have an excuse for my dull brain now and I'm going to milk it for all it's worth. If only my heart would beat properly as opposed to just sitting there making an arse print on the couch. Whoa, I just had an epiphany, my heart has become Homer Simpson. D'oh! Instead of bom bom bom, my heart just does a pathetic airy bluh....................bluh.....................bluh. Damn you Bob. Damn you to hell! (Sorry obscure Planet of the Apes reference, Charleton Heston one not the crappy Marky Mark version).

Everything takes so much longer to think through. Even writing this blog is laborious. What should take me 10 minutes now takes 28 bloody hours. I have the attention span of a gnat and trying to find words is about as easy as trying to find Osama Bin Laden. Multi-tasking is no longer in my repertoire of skills. Following simple conversations can be difficult some days. Should I really be confused discussing Brittany Spears? Is Madonna's love life that complex? What the hell is going on? Is my husband spiking my coffee with vodka? Is there pot in my brownies? It's bloody exhausting.

Has anyone seen the fantastic you tube video of Miss Teen USA 2007 South Carolina's speech? Oh my god that cracks me up. If you haven't seen it please get on you tube and watch it, it's a classic. Comedy Gold! Sadly this is what I can sound like on a bad day. Hmmmmm.....first I had my Heidi Klum delusions and now I'm comparing myself to a beauty queen. It may be time to call the men in white suits. "They're coming to take me away, ho-ho, hee-hee, ha-haaa".

I am so not the sharpest tool in the shed. Or as my husband pointed out I am pretty much a "rusty hoe". Yes much laughter around the dinner table when everyone realised what he said. I'm not sure, but I do think both of my kids pretty much peed themselves they thought it was so funny. Yes yes. Mum is a rusty hoe. Ha de ha ha. At least I can still provide comic relief for my family.

My brain remains MIA. If you see a pink squishy brain floating around looking lost please send it back my way. I miss it very very muchly.

Whatever the hell my name is! :)

Wednesday 29 July 2009

My Life as Heidi Klum's Double.

No. No. I'm not Heidi Klum but I can understand your confusion. The likeness is remarkable. Ha! "I don't think so Tim".

Why must people constantly say to me "But you look so well" or my fave "I thought you'd look sicker". What the....!! How am I supposed to respond to that? Apparently I don't look sick enough for some people.

Some days I feel like I should wrap my arms in bandages or grab a cane to walk with. Then I'd look "sick".

I may look like Heidi Klum on the outside, but on the inside I'm holding it together with gaffer tape, hope and a prayer, and the gaffer tape is losing its glue. Where's MacGyver when you need him? I'm sure he'd be able to shore me up with a piece of old chewing gum, a band aid and a paper clip.

What people don't seem to realise is that many chronic illnesses, like Bob, are primarily invisible. No one sees the internal crap that goes on. Just cause my super model good looks are showing doesn't mean I'm not feeling like death warmed up on the inside. If I was a house my innards wouldn't even be classed as a renovators delight. When I'm standing talking to you at the shopping centre a whole different dialogue going on inside:

"Ok I have about 5 more minutes before I'm going to have to leave. Damn my legs are starting to get shakey. Tense my calf muscles. Tense. Release. Tense. Release. Damn there go my hands. Pins and Needles. What? Oh yeah, I hear that Jenny's mum was going to the concert. Pump my hands. Pump my hands. Oh crap nausea starting. Swallow it down, swallow it down. Tense. Release. Tense release. Ok where's the closest stacking stool to sit down on? Ok, just over there. Tense. Release. Pump. Pump. Damn, dizziness starting. Focus Michelle, focus. What did she say? Damn, keep talking, keep talking. Any words will do. Nod meaningfully. Ok nausea rising, this isn't looking good. Yep. We will be going to the concert. Ok legs hold out just a little bit longer, just a couple more minutes, you can do it. Concentrate Michelle. Damn it concentrate. Getting shakey, crap vision going, wind in the ears. Crap. Pump. Pump. Tense. Release. Tense. Release. Uh Oh. She's looking at me meaningfully waiting for an answer. Damn what were we talking about. Penguins? No. Basketball. May be. Hmmmm. Concert that's right. Ok. Ok. Need to ask her about the.... what's the word? The stuff, the what you wear, the, the, the.....costumes! Ah ha success! Stacking stool 10 steps away. Start stealthly moving toward stool. Tense. Release. Tense......

No one sees the amount of strength, will power and plain old prayer that is required to stand for five minutes chatting about the school concert.

And when you are having a shocker of day you are hardly out and about showing off you pasty faced exhaustion. If you can't stand you can't do your "So You Think You Can Dance' moves at a night club. Duh! Maybe I should start taking photos of my super bad days. Then when the next well meaning person says "You're looking well Heidi. You must be getting better" I can show them my portfolio of pasty chic pictures to prove I'm still sick. Just ask my Husband. He can tell you it's true he's seen me at my worst. Apparently I look like "a bag of shit tied in the middle" some days; and who says the romance fades. Luv you too honey.

Illness isn't always visible people. It's tough looking like a super model some days.


Oops that's right Michelle, my name is Michelle. Say it 20 times my name is Michelle, My name is Michelle.......... I am not a super model, I am not a super model...... :)

Friday 24 July 2009

Bob and the White Rabbit

One pill makes you larger
And one pill makes you small
And the ones that mother gives you
Don't do anything at all
Go ask Alice
When she's ten feet tall
(White Rabbit, Jefferson Airplane, 1967)

I've always loved this song. It's the quintessential 60's psychedelic anthem. Since Bob came into my life that first verse has taken on a whole new meaning. Pills and Bob go hand in hand. Unfortunately I have a sneaking suspicion that the members of Jefferson Airplane were having a much more entertaining time with their pills than I am with mine.

I take Pill A to increase my blood volume, Pill B to constrict my blood vessels, Pill C to manage my heart rate, Pill D to alter the neurochemical messages in my body, Pill E to compensate for the total lack of Vit D in my body, Pill E for the chronic gastro symptoms and Pill F to counteract the side effects of Pill A.........

Then there is Pill Q for the excrutiating headaches which result from low blood pressure, Pill R to stop the chronic hayfever which also lowers my BP, and Pill S a multi-vitamin which I take in a vain hope it might help something!

It's trial and error with the medications. You get to change pills because some just don't work, some have too many side effects, you need to keep increasing the dose to try and manage your escalating symptoms, or you need to add a new drug for the new and exciting symptom that has just developed.

I have become the human maraca, if only I could keep a beat.

Prior to Bob I would have been lucky to have a panadol once a month for a headache or the occasional Telfast for my hayfever. Now I'm on a first name basis with the pharmacist at my local chemist.

The side effects of many of the drugs can often seem worse than the symptoms they are supposed to treat. I've had a delightful collection of side effects some of which have passed, some of which are very very persistent, some of which are just plain weird. The list includes:

nausea (even water can make you want to puke)
vomiting (threw up for almost 6 wks when I started one of them. Better than Jenny Craig but oh so unpleasant!)
stomach cramps
the trotts (sprinting skills much improved, watch out Asafa Powell)
weird skin changes (bruise easily, dry skin, no tone, strange dots)
hair loss (it fills the shower drain every day)
dry mouth
painful hands (up that Florinef and I can't touch my hands for about a week)
insomnia, or conversely

Fun, fun, fun.

My colourful pill collection is just part of the furniture now. I keep them in a cute red Arnotts biscuit tin on the bench (the Florinef in the fridge next to my chocolate stash, it's all about developing positive associations!!). My kids know what are my morning pills and my evening pills. They are so cognisant of my brain fog that they always ask "have you had your tablets Mum?". Three years ago we used to joke when the grandparents came to visit with their plastic shopping bag filled with their medications!

What can you do? You need the pills to function so you just have to suck it up. They're not a cure but they help you keep Bob in line, at least part of the time. It's all part of the joy of living with Bob. In the sage words of Jefferson Airplane:

"When logic and proportion
Have fallen sloppy dead
And the White Knight is talking backwards
And the Red Queen's "off with her head!"
Remember what the dormouse said;

Luv it!

Michelle :)

Wednesday 22 July 2009

Chiko Roll: the new Super Food.

Forget blueberries and salmon. Apparently Chiko Rolls are the new super food.

For those of you who are unfamiliar with the culinary pinnacle that is the Chiko Roll (I don't think they are sold outside of Australia), it is an Australian classic like a lamington or vegimite. They are sold primarily in fish and chip shops and every road side petrol station in Australia. They are a bit like a giant spring roll, deep fried and filled with a cabbage and miscellaneous "goop". The advertising posters in the shop are a fantastic tribute to Australian Ockerism. Its always a scantily or leather clad, big-breasted woman on a motor bike with a Chiko Roll in her hand. Its all very phalic. But I digress. (Wow who ever thought I would spend so much time describing a Chiko Roll, that's 10 minutes of my life I can never get back. I think the word "Sad" comes to mind).

When I went for my first tilt-table test I was given a list of foods by the cardiologist running the test. There was a speal about the benefits of salt in the diet, "Salt good blah blah blah. Eat more salt blah blah blah". Then there was a list of salty foods with data about the amount of salt they contained. Ok sounds good. Scanning down the list:

cornflakes 1 1/3 cups 240mg,
crushed tin tomatoes 100 gm 800mg salt.......and then

Chiko Roll 180gm 620mg salt.

This was then followed by:

donar kebab 400gm 1200mg, and
chinese sweet and sour 200gm 900mg salt. What the...?

In what freaky bizarro world is a cardiologist giving me a list of food recommendations that contains Chiko Rolls and donar kebabs? (For those who are interested in the salt content of spam or Burger Rings, I'll put up a copy of the whole list, if I ever work out how to scan items that is). This simply confirms the freakiness of Bob as a disorder.

When I went into hospital for intensive rehab they put me in with the cardio/respitory group. The lovely OT came in to give the introductory speal and tell me about the information groups they had especially relating to diet and exercise. I couldn't help but laugh at the look on her face when she realised that I had to increase my salt intake and I showed her the list from the cardiologist. She handed me the sheets of info, mumbled something about me probably not needing to attend the class and walked out. Yep that's right, freak girl in the hospital!!

Those of us with Bob are the antithesis of normal patients. What is bad for most, is good for us. I think I am single handedly saving the salt industry and doing my bit for the GFC. Plus its a damn good excuse for scoffing down a huge pile of fish and chips with extra salt, fully prescribed by a cardiologist!

An apple a day keeps the doctor away. I don't think so. Take one greasy, salty Chiko Roll and call me in the morning!


Tuesday 21 July 2009

The Horse with no Name

Ok so I have Bob. But Bob is a just a general term, there are many different types of Bob. There's

Postural Orthostatic Tachycardia Syndrome (POTS),
Neurocardiogenic Syncope (NCS), and
Orthostatic Intolerance (OI), just to name a few.

But what do do you do when you don't have a sub-type? I'm too odd to fit into any specific sub-type. Over the last couple of years I've been told I have a variety of sub-types including NCS and OI and most recently I was told to consider Pure Autonomic Failure as a real possibility. Woo Hoo! It just gets better and better. I did start with absolutely no idea just a group of weird symptoms that no doctor could understand, so I guess that's progress?

Currently I am living with the horse with no name.

Each time it's been like trying to squish a round peg into a square hole (though in my case I may be more akin to a dodecahedron peg). I've never really fit in anywhere. My symptoms are odd. Well to be honest I've always been a little left of centre, Bob is just the latest instalment. My prof tells me that he has seen only 1 or 2 patients in his entire career with my symptoms. Again I use the words Woo Hoo! I'll admit it can be just a little disconcerting when your cardiologist can't find your pulse. I'm sure I have one, it would be rather hard to write this blog if I really had no pulse. I like to think that makes me "Special" (yes I am deluding myself and am living in the world of denial, but hey whatever works right!).

This is one of the reasons I named it Bob. No one else can give me a name so I'll take back a little bit of my power and name it myself. It's rather hard to be intimidated by something named Bob. Bob is a bald, middle-aged accounts manger from Balwyn, who likes watching Antiques Roadshow and playing scrabble online. I can deal with Bob!

So I am officially a FREAK!!! (Not that that is any surprise to my family and friends). I'm off to have some more delightful tests to see if they can decided exactly what type of freak I am. Who knows maybe I'll get a new name I'll let you know.

Michelle aka "the FREAK".

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……..

Friday 17 July 2009

What the Hell is Dysautonomia??

What the hell is Dysautonomia? Sound like a great name for a band right?
Here is Dysautonomia with their latest hit "Gravity is not my Friend".

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.

Bob occurs when your autonomic system, like Elvis, leaves the building. The autonomic system is the "autopilot" of the body that controls the automatic processes in your body, the things your body does without conscious thought eg your blood pressure, heart rate and breathing. When it misbehaves it can cause a range of fun symptoms:

Tachycardia (fast heart rate)
Bradycardia (slow heart rate)
Orthostatic Hypotension (low blood pressure when upright)
Orthostatic Intolerance (inability to remain upright)
Syncope or Near Syncope (fainting)
Severe Dizziness
Exercise Intolerance
Exercise Fatigue
Gastrointestinal Issues
Shortness of Breath
Heat Intolerance
Trembling Limbs
Brain Fog
Frequent trips to the loo
Visual issues

These can be mild or severe, a day after day after day crapfest (guess which category I fall into?)
You can have one or two symptoms, loads of symptoms and the symptoms can change day to day. Bob is one unpredictable disorder. Bob is a delight.

There is no cure for Bob. There are medications, lifestyle and diet changes. But everyday is about managing your symptoms as best you can, rejoicing in the days you can do a couple of things you really want to do and accepting the days where just getting out of bed is huge accomplishment.

This is the joy of living with Bob. It can make you feel like a freak at times.
Michelle :)