It feels like I am falling. My eyes glaze slightly and my vision begins to blur and a freefall sensation takes over, very soon to be replaced by adrenalin jetting around my body. My heart pounds and sweat begins to pump out of my glands as my body tries to keep me upright. When this begins I know that I have to get myself horizontal as soon as possible no matter where I am. On tram floors, house party dance floors and litter-strewn footpaths, I plant myself down, and wait.
The first GP I went to originally dismissed it as a viral infection. My glands were high-ish, my throat had a dull pain that always felt like it was on the precipice of a more spectacular pain and I was tired, really really tired. After two weeks of bed rest I returned and saw another GP at the same practice who ordered a slew of blood tests. He noted that my blood pressure was low when I was seated and even lower when I stood up, which explained the dizziness, but having low pressure is actually very lucky, he told me. A few days later he rang to let me know my blood works were healthy so whatever it was, it had passed.
It was about this time that the paralysis started in my legs. Lying down watching another episode of Real Housewives of wherever I would feel this weird floating sensation in my leg followed by pins and needles. After a month of constant bed rest, a growing number of symptoms and a workplace wondering what the hell was going on, I saw another GP who suggested we test for MS. She sent away a request for an MRI, told me that the hospital would contact me with an appointment and to try not to worry and, whatever I do, not to Google MS. After a month I called the hospital to find out how long I could expect to be waiting. They let me know that they didn’t have an MRI machine and my doctor would have to refer to someone else. I called the GP practice and let the receptionist know of the mistake as I Googled MS with my free hands. Two weeks later I got a letter from the hospital: I had an appointment for an MRI in six months.
That week I tried to go to work but lasted only an hour before I was sent home, white-faced and horizontal in a taxi. I went to the GP and she told me she couldn’t treat me until MS had been ruled out.
What should I tell my workplace? I asked her in tears
I have experience lying in bed for prolonged periods of time. When I was sixteen I was hospitalised with anorexia. For the first few weeks of admission I was stuck in bed until I registered a weight gain. Bed rest for someone who exercised at the gym for a minimum of two hours a day was pure torture. A psychologist would visit and set me art tasks and then I would be left alone lying in the whiteness of the hospital desperate to escape.
One day, I did escape.
Resigned to bed rest after a minor weight loss I had snuck off the ward while the nurse bay was empty and through a fire escape. I ran out of the hospital via the staff car park and started to jog around the city streets. Panting past bemused people in suits on their lunch break, my baggy tracksuit pants and skivvy swamping my tall bony frame. The doctor who had admitted me had told me that my heart was under a lot of stress exercising at such a low body weight. He had said that I was at a very real risk of a heart attack. As I rounded another corner I could hear my at-risk heart pounding in my chest. Only two days earlier I’d seen the look of a mother who had lost her child, that one to a belt and a curtain rod, left swinging after the night nurse had done her cursory check. I thought of my mother’s face taking on that pained distortion and started to cry. I walked back to my hospital bed and pressed my beetroot-red face against the parched white sheets.
To put me out of my misery my parents decided to pay for the MRI as a Christmas present. It was in Box Hill, east of Melbourne, and my mum and I drove to the hospital in silence. As we waited for the appointment I told her that I had decided that I would be fine if I have MS. She told me not to say that. She told me that there was a lot of research right now and if you are going to have MS at any time now was the time to have it. We both nodded in agreement and then remained silent until the doctor called my name.
We only had to wait twenty-four hours to find out the result. It was New Year’s Eve and my boyfriend, my sister and my mum turned up to the doctor’s office with me. In the small room we huddled together. The doctor smiled – it wasn’t MS. We all hugged and everyone started to leave the doctor’s office.
But, hold on, I protested, hold on, what is it then?
Everyone in the room scowled at me. It wasn’t MS, and there I was wanting more. But at this point I had been sick for two months on and off. I had celebrated my thirtieth birthday by sleeping an entire week beforehand and taken a nap in the middle of birthday drinks.
The doctor shrugged.
Sometimes you just don’t know what it is, my mum said.
As we walked out of the doctor’s office I forced a smile, trying to appear as elated as I knew I was supposed to be. Deep down I had a horrible nagging feeling of dread, knowing that this was far from over.
Two weeks later I went back to the GP for another medical certificate and was told my illness was probably caused by anxiety and that there was nothing more they could do for me. I called my mum, furious, and she told me to calm down. She said that anxiety wasn’t anything to be ashamed of. I told her that I knew that but that this wasn’t anxiety. She told me I sounded crazy. And standing on the footpath outside the doctor’s surgery, crying and yelling into my phone in broad daylight, I suppose I probably looked crazy too. I hung up on her and walked to the bus that would take me the 200 metres to my house.
There is a special type of loneliness that someone with an undiagnosed condition inhabits. Without the validity of a doctor’s diagnosis it is easy to feel completely alone in your illness. Not only is there no cure in sight and no way to know how bad it is, but there is also no way to explain your illness in a language that is familiar to people.
On bad days the fear is real.
There have been times in the past year that I felt like I might be dying. When my stomach started bleeding, when I pissed myself involuntarily, when my leg went into paralysis – those were the moments when I started to worry that maybe something was seriously wrong. But without knowing what it was, I was simply left with a cluster of ever-evolving symptoms that seemed to fit similar mystery illnesses that my housemate’s aunty or boyfriend’s mother or that woman from accounting at work had.
As I lay on the floor of my office with my legs on my computer chair to increase my blood pressure, my colleagues comforted me as my sick leave continued to dwindle away. They all reassured me, Don’t worry it won’t last forever. I couldn’t help but wince at this. How were they so sure?
In that first long stretch of sick I willed myself to be better. Told that I was simply suffering from panic attacks, I would force myself to walk, to go to work, to go to the supermarket. Crying from frustration at another abandoned supermarket trip, I would ask myself why I was so anxious when I stood up. Nothing made sense to me anymore. I wondered if I had become acrophobic without realising. I spent many days that summer lying on the footpath as I waited for the dizziness to abate. It didn’t.
And then it did. Slowly, as the summer ended and the autumn began, I started feeling stronger and stronger. For most of my adult life I have worked three days a week in an office – enough to pay my rent while also allowing me time and space to write. While writing had long been made impossible with the fatigue and the brain fog that accompanied the dizziness, as I got stronger I found myself making it into the office one, two and then all three days. On the days I wasn’t working I would sleep for the entire day recovering.
A few more months of this life of spending every moment not at work in bed and I was well enough to go out again. I went to the NGV to see Melbourne Now and even though I needed to sit on a bench on the side of the road for a good half an hour afterwards, I was still able to get back home on a tram. I felt like I was alive again. I decided that whatever it was, be it anxiety or mystery illness, it must have gone by itself.
Then one morning I woke up and the familiar dizziness and dull heaviness in the air returned and I knew it was back.
Moving as little as possible seemed to be the best way to avoid the dizzy. When I lay down my breathing returned to normal and the dizziness slowed. As I entered the sixth month of my illness I began obsessively avoiding movement in the exact opposite way that as a teenager I had craved exercise to feed my anorexia. I fantasised about a teleporter that could deliver me to wherever I needed without movement. I caught cabs to work and took the elevator where possible. I began to live on delivered pizza or whatever I had in my fridge. I would get a bus two stops to the end of the road paying the premium price of $3.76 not to walk the 200 metres. I worked from home when I could – staying as horizontal as physically possible – still in pyjamas. It was through these measures that I was able to keep my job.
And again I began to feel stronger. Week by week, month by month. I was once again able to make the fifty-metre walk to the supermarket without a call to my mum or a cab company to come get me as I held on to a power pole dripping with sweat. However, movement wasn’t the only thing that could catch me off guard. Even at my strongest a slew of stimuli could leave me lying on the footpath. A single fluorescent light or a projection from a PowerPoint presentation was enough to set me off. Standing in the Coles at Barkley Square, smug with my accomplishing the short walk from my house, I would be struck by the reflection of the white light from the freezer doors and the falling feeling would begin. Those moments were the worst. Even though waking up and feeling terrible from the get-go is hard, at least I have the security of knowing what the lay of the land is. Those days where I felt okay, good even, and attempted to engage in the world only to be slapped in the face mid-normal-life activity were particularly cruel.
I am not, and I don’t think I ever will be, comfortable with the idea of fainting in public.
The thing is I don’t have such a good record with being unconscious in public. A few years ago I was mugged while living overseas. Coming home from a dinner with a friend I was pulled off a moving motorcycle and hit in the back of my head. After the attack I woke up in the middle of the road with sight in one eye gone and my head feeling so heavy for my crooked neck that I had to hold it up with both hands. I was bloody and alone in the middle of the road in the pitch-black night of Phnom Penh. The two men who came across my broken body spent the first few minutes arguing about whether to help me or rob me. The tuk-tuk driver who eventually decided to take me to a hospital demanded we nut out a price for the journey before we made the trip. By the time we got to the hospital I was so tired of keeping myself conscious that I collapsed into the arms of the security guard sitting outside.
The sight in my eye came back that night but the attack left me sans the ability to taste or smell and it also left me terrified of fainting.
So, yeah, I have trust issues with passing out in public. I’d rather just lie on the couch, thanks.
Being dizzy in public (DIP) is like a slap in the face to me by my condition, goading me with cries of, ‘You thought you were well enough to go to the supermarket/pub/work/toilet, well, think again.’ So there I was in front of the freezer holding four boxes of Lite n’ Easy frozen cannelloni in Barkley Square Coles when the waves begin and I’m definitely DIP. From that moment on the only focus is to get home so I can lie down, preferably before the black dots start clouding my vision. I start dripping with sweat as I quickly make my way to the register. When I’m in this moment I need to focus on calming myself down as much as I need to be horizontal. I often put on a podcast called Stuff You Should Know as I try to regulate my breathing and get somewhere I can lie down. For some reason the inane chatter of two middle-aged men discussing the origins of karate or folklore helps to calm me down. At least until I can stagger to the seats outside the Coles, populated by old women who look at me with derision.
I have a couple of these safe spaces when DIP. Chemists are the pick of the bunch as they nearly always have a seat and they also have the added bonus of having medically trained staff who can resuscitate me if worst comes to worst.
Public transport at peak hour is the worst time to be DIP. People are pushing, it’s generally overheated with limited fresh air and I already have that level of anxiety that anyone feels being packed into a small space with so many other breathing humanoids. Adding some well-timed DIP to a busy tram ride is a nightmare waiting to happen.
The stress of asking people for a seat on public transport when you do not have a visible disability is not to be underrated. I have had people blatantly ignore me, while twenty people all in earshot look the other way. I’ve had people demand to know why I need a seat and gruff angrily when I say that I’m feeling like I might faint. I have even sat on the floor of trams, unable to obtain a seat as my feet have buckled under me.
The only good thing about DIP on public transport is the paramedics. I collapsed at Flinders Street Station last year and the paramedic helped me off the ground and took me to a small room out the back of the station. He gave me water and jellybeans and told me my heartbeat was irregular and my blood pressure was a concern. I told him I was on a waiting list to see a cardiologist and that they had told me it would probably be a six-month wait. He told me to stop waiting and see someone else.
I took this advice and a month later I finally got in to see a cardiologist. His office was in the same building as where I had had the MRI almost a year earlier. He looked at my file, at this point bulging with tests and specialists’ notes, conducted a few tests of his own and then he gave me a diagnosis. After eleven months, two hospital visits, two neurological examinations, one MRI, one twenty-four-hour Holter monitor, one ECG, one endoscopy, one colonoscopy, over thirty blood counts and about as many GP appointments, I finally had a diagnosis: neurocardiogenic syncope. A circulatory disorder that falls into the broad catchment of dysautonomia, a collection of conditions that signal the dysfunction of the autonomic nervous system. The autonomic nervous system controls the functioning of the body that occurs involuntarily such as breathing, blood pressure, digestion and heart rate. To put it simply, my shit was all fucked up.
With sympathy in his voice he told me ‘that it all might be a bit much for me to take in right now’. I beamed and told him I wanted to hug him. And while that might seem like a strange response to someone telling you that you have a chronic condition, he said that a lot of people have that reaction. According to a patient survey conducted by Dysautonomia International in 2013, the average length of time that it takes someone with dysautonomia to be diagnosed is five years and eleven months. So I got off pretty light, really.
The most famous person who has dysautonomia is the artist formerly known as the Yellow Wiggle – Greg Page. In fact, he is often how I describe my condition. I will say, ‘I have a heart condition, it’s what the Wiggle who got sick had.’ Dropping his name is a whole lot easier than explaining an autonomic nervous system dysfunction that remains a bit of a mystery to most of the medical community.
My dysautonomia is accompanied with a rare autoimmune disease and evolves on a remitting, relapsing cycle. That means that I feel really, really awful and then I start to feel less and less awful – never truly better but almost better – then I get a cold or there is a spate of hot days and I go back to square one and need to get out the cane and the blood pressure monitor again.
Five times I have been on this merry-go-round so far. I am currently working with a team of specialists (yes, this is an actual sentence I say now) to try to lengthen the almost better and the less awful and to shorten the really, really awful. I am very lucky with this presentation (yes, this is also something I say now) as a lot of other people who have dysautonomia stay at the really, really awful level for most of the time. People I know with the condition have prolonged hospital stays, some spend more time in hospital than they do out, so the fact that a few months a year I can go sit in a beer garden and have a glass of wine with friends is nothing to be sniffed at.
It also allows me to keep a job. While I tend to need to take way more (unpaid) sick leave than the average person and spend a few months a year working from home, I am still employed. And that’s very important to me. Not only because, well, uh, money, but also because of the isolation that being ill creates. It is like someone has got a protractor and pencilled a small line around my bed. Dysautonomia is not life-threatening but it is definitely life-changing.
I guess this is the bit where I talk about friends. This is a topic that always comes up for people with chronic illness. Being sick is a good way to lose contact with friends. Being sick chronically is a great way to lose friends. I got sick at twenty-nine years of age, not at twelve years. At this age we spend more time with work colleagues than we do with friends.
People have something going on, good or bad, at most times: work changes, babies, marriages, miscarriages, break-ups. Prior to being sick I would sometimes not see a friend for a few months until we would meet up for lunch or drinks and catch up on our respective lives. When this is your friendship landscape, being sick takes you somewhat out of that equation and you find out about most of these goings-on after the fact.
During the first months that I was bedridden I felt isolated and incredibly lonely. The doctors had no explanation for why I felt so sick and I felt unable to communicate this to friends who got in contact to see if I would have a drink with them. To some I would just explain I was feeling ‘ugh’ and had been quite sick. Ugh was a word that seemed to spell out the frustration and feelings I felt at the time when the doctors had no real words. To others I overcompensated with lengthy explanations of my medical issues in the hope of some understanding or sympathy and was left, perhaps unsurprisingly, with a ‘Well, feel better,’ three-word response. Until the doctors gave me language to communicate what my body was doing I really struggled to do it myself.
Slowly a new dynamic has formed. I have got used to entertaining from the couch. I’ve learnt that some people are comfortable with sickness. They are the ones that don’t need to fix you or tell you how you can heal yourself by cutting out gluten, or continually worry they will tire you out by visiting. They just sit down on the couch and watch YouTube with you.
Sitting with the illness is the hardest thing to do for me also. It is difficult not to fall into the rabbit hole of searching for that miraculous herbal cure, the newest drug trial, the risky but promising transfusion treatment that some doctor in California is administering. Those desperate medical Nancy Drew moments tend to come over me after another relapse. When I miss Christmas day, again. When I miss my birthday, again. The true horror of returning to the prison of this illness after spending a month working, socialising and exercising like a near normal person is indescribable. Each time it hurts in a new way. My boyfriend once told me that the worst thing about my condition is that it takes away any opportunity to plan for the future.
For the first time in my life I’ve been forced to live my life day by day, unsure whether I will be able to attend that work meeting, whether I will be able to go to that wedding, be able to even finish this article, until the very morning of the day in question. This illness embodies an immediacy that demands submission. People with my condition have told me that after a while you go through a grieving process about your health and it no longer hurts as much. But I don’t know if I will ever stop thinking that I will get better.
My condition is epigenetic, which means that all of my body’s experiences throughout my life have transformed my genes to how they are today. There is some peace in that. Knowing that each illness, each injury, each life moment that has mutated my genetic code to lead me to right now has been a lifetime in the making. I own the condition now, and wear it like a worn leather belt. I just look forward to the day when I can stay on my feet again.