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……..

39 comments:

  1. wow,. werent kidding about "get cumfy" i only got about 1/3 threw.

    because i am incredebly uncumfy.
    i love docs when they say its in your head while your withering from symptoms right in front of them! I to wish there were supposr groups, and yet i hear there is one but its about an hours drive away (for endo) and well... i cant take that long of a car ride due to pain most times unless i drug myself to high heavon.. and well then i cant talk to people in any meaningfull way or rember it.. and the point of a group would be to get stuff out and REMEMBER i got my venting out.

    i am not in my 30's i am in in my 20's 22 to be exact and this is not at all how i pictured my life either. had to give up on my college education, because even an artsy program was to much thinking while in pain or demerol, missed way to much and by the end couldnt even walk to class most days. nore can i work.. so i CPould go to a group... if there was one.. and local. there is now a seniors home down my street and its weekly that i wonder ig they have group theripy, because i am thinking i could relate to them and posibly get some much needed things out.

    i too often feel eldery. but that happens with the lack of controll over ones body, bladder, brain, and inability to walk most days. I can no longer relate to my friends, they are either in school or finished and now working. i am neither. they cant relate to suffering from even encontinence when my bladder goes on a compleat frits of being scared to leave my home and go or do anything because randomly the pain, or leg weekness, or bladder issues can start at anytime, and nausia does come everytime i try to be a normal part of the general public and leave my home.

    okay. sorry now i am ranting to you.
    perhaps its the fact i am burnign my abdomen from the heat pad that although it is hot enough to hurt my abdomen.. is not hot enough to acturaly help with my pain in my abdomen... i keep heating it in hopes it will get hot enough, and i will deal with the burn later if i get one.

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  2. Great post....I call my Costochondritis Bart...so I loved that you named yours as well. Bart and Bob can kiss my butt. =)

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  3. Oh, wow. It is scary how much this post sounds like my life. (My husband's name is even David!) I was diagnosed with Dysautonomia in 2007. I pass out so much that I am pretty much confined to my bed or recliner at all times. I have not left my home except to go to the doctors office or hospital this entire year.

    Life has been VERY hard and it seems like it just gets harder every day. What you said about the guilt really hit home. I am consumed by guilt and it is so very hard to deal with. I know in my heart that none of this is my fault but I still feel so guilty for not being able to be the wife and mother that I'm supposed to be. I hate missing out on so many things my girls are doing. It just breaks my heart. :o(

    I'm so glad I found your blog on Facebook. I could not read your entire post but I will definitely be back to finish. I hope you'll come visit me, too.

    Have a blessed weekend.

    Teresa <><

    http://toomanyheartbeats.blogspot.com/

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  4. I'm so sorry you have to go through all this. I also admire you for the fact that your blog shows a woman who is going through a lot, yet manages to be witty and funny at the same time. I love the way you write.
    There are so many things in your blog that I can relate to, it's so sincere. I have been living with ME/CFS for the last three years (I have no special name for it, I call it "it", because it's quite derogatory). I can feel you. I remember the countless visits to doctors and how some of them treat you like crap. I remember the depression and the "it's all in your head" scenario. I remember being so angry at everybody. My yearning for a concrete diagnosis, even if it was something serious. But most of all I remember a bubbly, social, intelligent woman who used to brag about being good with words (being a linguist) that was confined to her bead for months, losing her ability to recall words and living in a neverending mental fog. I am on my slow way to recovery, but this condition has taken so much from me. I feel you, honestly. And I admire the intelligence that shines through every word of your blog, despite all that you're going through.

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  5. Thanks Elie. Thanks for your kind words. Sometimes it's hard to explain what it's like to live with chronic illness to those without it. That feeling of losing yourself can be so crushing. I'm really glad you are heading in the right direction healthwise :)

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  6. You wrote my life. I have MS. Diagnosed in 2002. LOTS of similarities. Who knew my life could be taken away like this? Still not at acceptance but working on it. I'm 48 going on 80. Thank you.

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  7. Sue - sorry to hear you are going through a similar experience. I'm still not at acceptance either (though denial is getting a good work out) but I think I'm getting there.

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  8. I was diagnosed vaguely in my teens when I couldn't get through a tennis match, practice, or even piano lessons without getting woozy. The damn tilt test should be able to tell you more than "you'll just have to learn to manage life differently." I hate that over the years any doctor I've seen still doesn't even know of dysautonomia or if they do, they still try out the new ssri of the month or other drug that makes my body go even more out of control. Alabama is a bitch of a state in healthcare wisdom, so your Bob is, to me, Don(like a disabled one-nut bastard). Thank you for making me realize I am not as alone and the lazy mother and wife I thought I was(or at least not on purpose).

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  9. Hi Michelle, my name is Liz and I have Bob in my life too, though I've often advertised him as free to good home - or free to ANY home other than mine. I'm so glad I discovered your blog while clicking away on the computer - in my pajamas at 1:30 in the afternoon. Your life sounds IDENTICAL to mine - I'm 40 now and Bob appeared on my doorstep when I was 34. I was initially diagnosed with: 1) Sinus infection, 2) Parvo virus, 3) depression, 4) fibromyalgia, etc., etc., etc. - too many to count and remember in my head-fogged state. Anyway, I was finally diagnosed with Bob just about a year ago, and it explains EVERYTHING in my life, as I've had symptoms of our dear Robert since childhood (couldn't look at the camera for photos outside b/c the sun hurt my eyes, locking knees which ended my ballet days, dragging through school/falling asleep during filmstrips, etc., etc., etc. I never had the energy of any of my friends and struggled to keep up with just about everything, but I too was a smart A-student with big dreams and no energy with which to carry them out. My symptoms are JUST LIKE yours, I'm sorry to say. I've had to crawl out of the shower (water still running) and hold onto the bathroom rug for dear life to keep from falling/vomiting. Migraines, bladder pain and frequency that were not infections, TMJ, irritable bowel syndrome, flat feet, eczema/weird skin stuff, blotchy skin, double-jointedness that made me feel like a freak-show employee, then muscle/joint pain, sweating for no reason, feeling like being electrocuted, burning muscles/skin, aching everywhere, fatigue and couch potatodom, anxiety out of nowhere when there was nothing to be anxious about, bizarre feeling of itching all over, insomnia, restless legs syndrome/myoclonus, memory and concentration problems, word finding issues, etc. Before I was diagnosed, I too slurred words, my hands trembled while trying to bring a fork or spoon or glass to my mouth, I had extreme sensitivity to light and sound and smells, etc. I clearly remember at first not being able to read a new book by a favorite author - I thought her skills were declining, while it was my brain that was declining! While playing cards with family, I couldn't remember how to play! Instead of saying that someone threw me under the bus, I said threw me under the rug! I would be thinking yellow and say red. I too was told it was all in my head and due to depression, and so many other things I've lost count. While I was relieved to hear that I have Bob, I have been beyond disappointed by the fact that even with medication and those always-fun lifestyle changes, when I asked my cardiologist when we can get my life back and when can I walk my dog 3 miles a day like I used to before Bob, he said that I have to lower my expectations quite a bit so as not to be disappointed. Why do they discourage us so much? We need HOPE. I'm struggling to work just 15 hours a week and it seems like an insurrmountable task, just getting up, not throwing up, getting clean and makeup on so as not to scare people, and driving there in this 105-degree heat this summer without passing out. I'm "done" before I even get there! Anyway, just venting and letting you know how alike we are, Michelle. Thanks ever so much for your blog - it's so intelligently written and so funny, which is what we all need in our lives with Bob as our constant companion. Thank you, thank you, thank you. We all need to hang in there and fight the good fight. Liz

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  10. Wow what a first blog I was mesmorized. I'm a Nurse Practitioner who works with people who have chronic illnesses and your writing was the most frank I have read.

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  11. I came by through the first blog post link up. I have to say, this is the most ambitious first post I have ever read! It's obvious that Bob can't touch your creativity and your brilliance!
    I have a psych background too. My focus was neuropsych. Love it :-)

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  12. It seems almost as if you've stalked me and written my life. I'm seventeen and have been diagnosed with everything under the sun. I'm going to talk to my doctor about "bob" though and see if it's the problem.
    xx

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  13. Sorry to everyone about taking so long to respond. Technical difficulties have meant that I haven't been able to access my comments and had comments pop up months after they were posted.

    Amanda - Sorry to hear you have Don in your life. You are in no way lazy mum or wife, believe me I've thought that myself in the past we are always hardest on our selves.It sucks that they still can't find treatments for us. I know I'm over trialling drugs that may or may not work. "Live with it" is not a good enough answer any more.

    Lizaster - Wow your story does sound familiar. When I wrote this I felt really alone and it was hard to find information. I felt like a freak. I hate that so many of us are going through this and the story is always the same. It's beyond frustrating. At least the more of us who share our stories the more others know they are not alone.

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  14. Anonymous - thanks so much. It was hard to put up at first but from all the comments and messages since I now know I'm not alone in my experiences and how it all makes me feel.

    Varunner -woo hoo another neuropsych! I'm a neuropsych by trade and worked primarily in aged care and neurorehab. So rare to hear from another neuropsych especially from the otherside of the world.

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  15. Caty - It's amazing how many people have been on the same road. Glad I could give you another option to look at though I don't wish it on you. Hope you get some answers from your docs.

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  16. i just bumped here and l got intriged about bob and the red shoes...
    WOE is one word l defined what l read about you...
    hang in there Michelle, l surely will to follow you.
    Cool :)

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  17. Read every single word. My kids are older, and my husband is Jason, instead of David...but otherwise, it's awfully close. I say take a hit out on Bob and THEN rock the tequila shots in the green room.

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  18. Potsville - concrete shoes for Bob and then tequila shots all round I say.

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  19. Hi,

    I found your blog a few days ago.

    I have been reading it with tears in my eyes as this is my life minus the kids. The way you wrote about the disappearing friends, the guilt and the husband that has to do everything. Its my life and I hate it.I will never accept it I may just be less angry about it.

    I'm 37 and was struck down with BOB, I have to use your name as I don't have a name for this, when I was 33. It took 4 years to get a tilt table test. I got a diagnosis but no help. The relief on getting a diagnosis was great because it proved I wasn't an emotional nut job.

    Thanks for saying the things I have tried to say on my own blog just not as eloquantly.
    Rach

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  20. Rach - Thank you so much for your lovely comment. I wish that you didn't have to go through this as well. I hate Bob for what it's taken away from me, but I am more at ease with it now. I hate that it takes everyone so long to get a diagnosis, the time between getting sick and getting an answer rips you apart. I figure that it takes time to find that balance within yourself again, especially when you are still sick. I hope it gets more bearable for you and hope even more you can get relief from it all.

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  21. Only just found you. And so relate.

    I have MS. And hate the person it turned me into, and the things it took away. A black sense of humour is a huge blessing. I was hugely grateful when I got my diagnosis though as you will understand. There was a problem, I wasn't a hypochondriac and it WASN'T ALL IN MY HEAD. One of the biggest doctor cop outs I know.

    Hope things settle down to a more manageable level for you.

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  22. Elephant's Child - I here you on the diagnosis part. Sometimes you just want an answer any answer. I recently found out the rather shitty cause of my Dysautonomia (only took 5 1/2 yrs) and still processing the doom and gloom of it all, but it's an answer and in a weird way a relief. It sucks that the medical fall back is always "in your head", rather than a simple "I don't know". Seems we all sing the same song on this journey.

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  23. Hi. I was diagnosed in August last year after being sick for 5 months, so I'm lucky I got a quick diagnosis. I found your blog about 2 weeks ago and have just started from the begining after reading all of the Dorothy Shoes Project things. And this is great! I love reading about your experiences! And they actually kinda seem similar to mine. Other than the fact that I'm 21 and have no husband or kids of course. You've actually had me in tears through reading this for the past 10 minutes. Somehow you're able to explain everything so well, whereas I've been lost as to how to even begin. There is so much more I want to say, but I'm currently suffering an attack of the brainfog, so I can't think straight. Yippee.

    I had a specialist also hint that I was making it all up, and my boss and workmates have all become frustrated with me and all beleieve that I'm lying about being sick. Even now I have the diagnosis, I still get the "oh you're still sick? Really? Are you sure?" and "I thought you got diagnosed months ago. Why aren't you better?" It's all so frustrating! I get friends, family, and all sorts of other people telling me "oh you should do this, that or everything in between" which is completely unhelpful, though I know they mean well.
    I'm hoping you are now learning to cope with this better, but I'm sure I'll find out more as I get further through your blog

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  24. As usual, your words could have been extracted straight from my journal. Thank you so much for posting this. Its weird how reading that someone else feels like you can make you feel comforted and crappy at the same time! :( This moved me to tears several times!

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  25. Hi! Found your blog in a roundabout way through an old newsletter from the Hummingbird's Guide to ME. While I have different official diagnoses (there are so many I refer to them as the buffet option), the end result is that many of my symptoms are Bob-like or may in fact be Bob's annoying cousin. My bradycardia and orthostatic intolerance are mild, but my gastroparesis and bladder issues are moderate. The cognitive dysfunction and fatigue are extreme and those alone are lifestyle-altering. My intolerance of extremes in temperature is growing worse, and I haven't developed many satisfactory coping methods for that yet. Things that healthy people enjoy, like, say, a picnic, contain many layers of difficulty for me. I would have to know in advance how far I would have to walk to the picnic from my car, where the nearest restroom would be, whether I should bring my own food or whether there would be anything I could eat there, whether there would be shade, exactly what weather is forecast, and of course I would have to haul my half gallon bottle of water with me to stay hydrated (dehydration for me is a worse evil than the frequent need for a restroom).

    I have read several of your posts and enjoy them immensely. I would like to put a link on my own blog if that is okay. Feel free to take a peek at mine so you will know where you're being broadcast. My blog is primitive and these days the posts are brief due to cognitive dysfunction, but I share your passion for spreading awareness about chronic illness and for having a good laugh. Carry on!

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  26. Um, had a brain fart and forgot to include a link to my blog. Here it is:
    http://browserlife.blogspot.com/

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  27. Best description of the many facets of this f'ed upedness I have ever read. Thank you Michelle. Wish I could write like you, it must feel good to describe things so succinctly and with such impact. Bob hasn't actually taken all of your word-power away my friend. Your blog is doing far more good than even your award winning conference presentation. You are still working with patients, now it is fellow patients. I know I speak for not just this Bobette when I say, thank you. You help me every day with your writing and sometimes it is YOU that is responsible for me finding my 'authentic self' and wearing a beatific grin. -Rach

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  28. wow, you really have hit the nail on the head with this post.
    Thank you!

    I am 28 now, and not living the life I thought I would be living.
    At 16 I was healthy and happy. I was studying for my A levels, five of them, and managing to hold down a job - 16 hours a week term time and 40 hours in the holidays, to save up money for a gap year before uni.
    And then BAM! One day, coming home from college on the bus, I just couldn't keep awake. The next day I was falling asleep in class, and assumed it was a bug. A few days later I collapsed for the first time. and then again and again over the coming weeks I would collapse. Not quite a faint, but almost, I just couldn't hold myself up. I would be laying on the floor, whether that be the warm clean carpet of my bedroom, or a toilet cubicle or the wet pavement, conscious but totally lacking the energy to communicate or move, let alone get myself up. People were at first concerned but then after while they assumed I was faking it, or something. It was terrifying.
    I went to my GP who said I was depressed. He said the faints and near faints were panic attacks. He referred me to a child psychiatrist. I felt ashamed. And it didn't feel like it was in my head.

    I was referred to various specialists, who told me variously that it was depression, anxiety, pretending, hypochondria, "normal" for a female my age.
    My attendance for my second year at college was below 30%. Rather than the 5 A grades predicted I managed 3 B's. I could no longer manage my job. My life had changed from parties and friends, college and work and plans and dreams to hospital appointments and tests, resting and medication and worry.
    I somehow still got into uni. by my second week I knew I could not continue. I spent most of the time asleep or on the floor and I felt horrendous.
    A different specialist diagnosed fibromyalgia, but told me there was nothing could be done. My GP told me fibromyalgia didn't exist and I was mentally ill. By now I felt it.
    And over the past decade there have been about 20 inpatient stays. I have diagnosed and undiagnosed with various conditions. I am exhausted much of the time. I ache all over. I shake. I collapse. I get brain fog that is impenetrable. I have headaches, and reflux and gastroparesis and an overactive bladder, and anaemia and PCOS and fibromyalgia and flat feet and calcium deficiency and vit D deficiency and skin problems and occasional alopecia. I don't sweat much and then suddenly I am drenched. I itch. My stomach swells up. I feel like crap, most of the time.
    I have been told, repeatedly over the years that it is all in my head, that I am faking, that I am mentally ill, till I have almost screamed at the doctors "for gods sake, then give me appropriate mental health support", even though it still doesn't feel in my head.
    And then last year I collapsed and this time it was witnessed by a nurse, who was concerned and called an ambulance, who came and did an ECG and said "this seems a bit off", and took me to the hospital yet again. And then miracle of miracles, I saw a cardiologist who has an interest in POTS, who reviewed the many many pages of my medical file and said he was certain it was a dysautnomia that was causing everything and I could have cried.
    So now I am awaiting the tests and find myself in the strange position of wanting to be diagnosed with this horrible condition because it would explain everything!
    My life is not as I thought it would be. I didn't get to travel, I didn't get to do a degree or get the job I thought I would have. I didn't learn to drive or go on holidays in the sun or go out dancing and drinking with my mates. I have to live with the relatives and friends who ask "no diagnosis yet?" "are you sure its not psychlogical?" "you look fine to me" etc etc.
    so thank you for your post and sorry for the length of this!

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  29. TY, started googling about a dear friend's child and ended up learning more about MYSELF instead! I got a LOT of the same treatment as most of you and I actually had an organ failing. Seriously, prozac? Try surgery. Eventually I got it, and am learning to live life again without a few body parts. Humor in the small stuff, sounds exactly like my life. Glad to know some great people out there can understand us all!

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  30. Thank you, for I hate Bob! At first he was a silent stalker now well I still trying to understand. Thank toy for F-==-ng being real because this sucks.

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  32. A someone who has had CFS/ME and POTS since I was 14 (now 24), all I can say about your above post is:
    A THOUSAND TIMES YES.

    Thank you.

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  33. Oh wow, you've been blogging such a long time, why did t we meet earlier? Oh gosh you're a good writer! Thank you for sharing this post.
    Can I ask - you wrote then that being a patient was disempowering. Is it that way now you're blogging, meeting people, kicking goals??

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    1. Thanks Carly. I think I've been so ill over the last 8 yrs I don't get out much and I am a shit networker to boot. I still think the medical system is disempowering for many and it is an uphill battle for many myself included to be empowered. It is often a case of fighting the system as much as the illness and some of the gatekeepers are reluctant to give you the information or help you need. For some simply finding a GP who'll listen enough for a referral is a battle, limited by finances, knowledge and geography. I think having been in the health profession I knew a little about the disconnect and disempowerment but as a patient now it is crystal clear. Blogging and the like for me is very much reclamation of voice and power and hopefully in turn helping others to reclaim their own power. Often despite the rhetoric of patient centred care and engagement the actual delivery of the program is lacking and unless patients speak up and say it's not good enough nothing changes. That spurs me on now.

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  34. Thank you so much for posting this blog!!! It has helped in so many numerous ways and I am truly grateful <3

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  35. Love your sense of humor. Being a bit older and losing everything to dysautonomia, trying everything under the sun to get better,I have decided that two years of efforts and wasted life were enough. Seems no light at the end of my tunnel. So what is the point of struggle? I am giving up.

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  36. Just came from a new doctor appointment in which the new diagnosis of Bob was given. Found your blog and upon reading this first entry thought it was written just for me about me. I am still in a state of numbness as well as euphoria that there is a name to the symptoms I have been experiencing. Your words reach into my soul and let me know I am not alone. I have been sick far to long without a complete diagnosis and am not done due to a blood disease. But to have a name and somewhere I can go to help build a plan of action is a start from where I have been. Thank you for writing your story and I look forward to reading all you have put forth here. I too have a blog. Would it be okay to share what you have written here with my family and friends? I don't think I could explain it any better than you have. I'm on a new journey it seems. Not sure if I like the destination but I have always been able to turn the littlest things into a celebration. Hope Bob and I can turn this into a party (I say while biting my cheek). Thanks, Diane

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  37. This has a lot in common with my life. At least, the brain fog and fatigue aspects. I don't have a proper diagnosis, but I'm fairly sure it's sleep apnoea. I also used to be highly intelligent, articulate and proud of it. Congratulations on picking up the books (I'm trying to do the same). I am writing a book about my condition, misdiagnosis and life lessons - but it's a bit of a struggle with brain fog.

    Lia

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