December 2001

Our trip to Noosa on the Sunshine Coast of Queensland in Australia was superb, just like the holidays you have as a kid, but with alcohol thrown in. We’d all been hanging out for months, desperately awaiting our escape to sunshine and relaxation. It had been a difficult year for my family and we deserved the break. I was done with joint replacements and instead started the year with an ankle fusion which ended up in a life threatening blood clot (DVT). I was taking bucket loads of drugs to dissolve the clot as well as all the usual medications for my arthritis. But I was feeling great and nothing was going to stop me having a good time. I did things I hadn’t done in years – I surfed, I kayaked, and I swam the river (only to later discover the possibility of being taken by a shark was as high as . . . well as ending up in hospital for Christmas). I swam freestyle without a snorkel and breathed bilaterally – that’s on both sides, you know, turning your head to the left and the right for each breath. I bounced the boardwalks in my zippy little wheelchair mobility scooter time and time again. Noosa is one of the most wheelchair friendly destinations in Australia. Accessing bars and restaurants was easy, as was scootering the crowded footpaths under the influence of a couple of glasses of fine wine. Pedestrians jumped from my path as I powered the length of the main street and boardwalk, punctuating pleasant evening strolls with toots of my horn and shouts of

“look out!” from me and

“sorry,” from innocent parties who, on seeing this person in a wheelchair careening towards them, felt obliged to apologise, for well, for just being there in the path of someone less fortunate than themselves I guess. How many times have I been the guilty party in a collision with some heels, some feet, a trolley, a pram? How many times have I witnessed a really pissed off look of disgust turn into a dribbling request for forgiveness? Countless! Just because I’m in a wheelchair it should not be assumed that I am automatically in the right in all bumps, crashes, bashes and scratches. Sometimes I owe the apology. Sure sometimes I don’t but that’s life isn’t it? We aren’t always right, none of us.

We’d rented a great holiday house; a bedroom with an ensuite downstairs for me, a pool I could get in and out of and a little sandy beach on which I could privately bare my larger than life-size body. It even came replete with a jetty for sitting, for reading, for imbibing and for fishing. I caught two fish off this jetty and was sure that Ariarne, my sister and a highly qualified and spectacular chef, would have them filleted and served in some exotic manner before I’d even managed to pull the cork from a bottle of chilled sauvignon blanc. Alas no, they were thrown back, with my overly sensitive sibling screaming that I was cruel. Sure, rush to the fish markets but kill it yourself, no way. I laughed until I was almost sick. I laughed until tears poured down my face. I was having a ball.

Despite being on holidays I was still a person with RA and a blood clot from my ankle to my groin, and as such had to continue with all my usual medical treatments. Unfortunately my many and varied symptoms didn’t take a vacation when I did. And so while I was up in Queensland I continued with my daily intake of drugs which were pretty toxic and had to be monitored. So I went to have my usual weekly blood test. This time it was a little different though. This time I almost fainted, which was a little disconcerting as I’d previously been jabbed by a pathologist’s needle on more than one occasion. In fact by my rough calculations up to this particular point in my life I’d had more than a thousand blood tests and all without a problem. Of course that didn’t include the five hundred or so times the “bleeder” (that’s a term of endearment for the person taking the blood) had missed. So judging by this reaction to a simple and routine test, it seemed I was feeling a tad out of sorts. The bleeder was superb, textbook in fact – she got it first time, no pain, no trauma, no worries. It was me, I had a problem. Something wasn’t quite right.

I shrugged it off though and continued to do loads of relaxing, a bit of shopping and far too much eating. The family and I took an afternoon drive to Moolooloba, a beach suburb about forty five minutes south of Noosa, just to try the fish and chips. They were very tasty; in fact they were so good I scoffed more than I perhaps should have. I hoped that they would placate the bizarre out-of-body type feelings I had been having since my blood test. I felt dizzy, breathless, a little weird, kind of weak and light-headed, almost as if I wasn’t really there. I thought it must have been a blood sugar thing so I ate chip after chip after chip. So after adding nausea – from consuming more than my body weight in deep fried potato – to my already long list of peculiar symptoms,  we jumped into our rental minivan and I proceeded to drive us back to Noosa.

After about ten minutes I admitted defeat and confessed that I wasn’t feeling the best and that perhaps I shouldn’t be in the driver’s seat. After all, my ego was less important than the lives of my family. My abrupt move to the passenger seat caused more than a little consternation. I admit it, okay, I am pretty stubborn when it comes to being in control. And everyone knew this, so by a process of simple deduction they concluded rather swiftly that I really wasn’t well. And so a plan was formulated:

     “Do you think you should see a doctor?” Mum asked trying to conceal her concern that it might be a blood clot. Another one.

     “Yes, probably…”

     “Okay, let’s find one.”

Easier said than done on a Saturday night in a land far, far away from our usual stomping ground. Need medical assistance in Sydney? I can, off the top of my head name a dozen possibilities in mere moments. And I can get to any of them in about ten minutes. No problem. That night it felt like Queensland was without a hospital or for that matter, any medical system at all.

I came up with a few ideas.

     “Let’s ask at a service station, they’ll know.” They didn’t.

     “Let’s call Ariarne’s friend who lived halfway between our current position and our holiday house. She wasn’t home.

     “Look in the street directory for a hospital”. None listed.

     “Let’s drive to where I had my blood test yesterday. There may be something near there.”

All brilliant suggestions but on this occasion all useless, until quite suddenly I saw a sign – no, not a “sign from God” – just a street sign.

     “What about an ambulance station.”

Ariarne skidded the car to a stop (it certainly was dramatic stuff!) and she and our cousin jumped out and knocked on the door until a light came on upstairs and a uniformed man leant out the window and enquired as to our reason for disturbing his evening.

     “My cousin’s not feeling well, she’s…”

     “What’s the problem?”

     “Well we were . . . she was driving and began to feel . . .” Ariarne by this stage was over the polite formalities and jumped in with

     “She had a DVT and. . .”

     “I’m coming down.”

He was by my side in moments, medical kit in hand, asking me questions, taking my blood pressure, my pulse, temperature and more. The Ambo was a little concerned as DVT’s (Deep Vein Thrombosis) can become PE’s (Pulmonary Embolisms) and can kill, very, very suddenly. So he checked me out and said that if all was not right I would be in the back of his van with the sirens blaring and lights flashing faster than you could say CPR! Otherwise, if he was comfortable with my status he was going to send us all off with me as a passenger, and my feet elevated on the dashboard, to the nearest hospital which was a good twenty to thirty minutes away.

I was okay (apparently) and so off to hospital we went for a check up. I buzzed the intercom to access the Emergency Ward and was quickly triaged into what I hoped was pole position. But no, I waited and waited and waited for ages…. Finally I saw a doctor who seemed to take my description of my ailment with a grain of salt, declaring that I was obviously dehydrated and should, in the climate up in Queensland, be consuming at least double my normal quantity of water. The fact that I was feeling weak and had a really weird sensation down the left side of my face and body was of little concern to him. As was my description of feeling as though I was on the outside of conversations, watching what was being said, hearing it, understanding it, but not really being part of it. Perhaps he assumed that was my personality: Undeserving of inclusion in stimulating repartee. Who knows? All I know is that I left the hospital feeling weak and tired and with a bladder filled way past its maximum capacity. I was told to drink more . . . more water that is.

And so I spent the next few days of my holiday in paradise nursing a bottle of H20 as I lay on the couch, a position I rarely, if ever, take. If I feel the need to lie around I usually do it in the comfort and privacy of my bed. A person with RA falling asleep on a couch is not a pretty sight, particularly when they eventually decide that they should remove themselves from their dishevelled, squashed position. Stiff is the way we find ourselves after such stupidity. This time I didn’t care, I felt like shit (please excuse my language). I didn’t want to be anywhere else but flat on my back. In fact I couldn’t have been anywhere else. I didn’t have the energy.

I postponed visits from friends. I ignored lunch guests of my family. I neglected to entertain anyone with my wit and charm. I just lay around, sipping water and answering queries from the family, was I okay, they wondered? At first I refused offers of food and alcohol (but not for too long, just a couple of days). I am an emotional eater. Name the emotion and I will eat, happy, sad, depressed, excited… And I love nothing more than sharing a meal and a few glasses of wine with my friends and family. And so that is exactly what I did in my attempt to prove that I was indeed feeling fine and dandy – despite the fact that I really wasn’t. I ate and I drank at most of my favourite restaurants. And then suddenly my holiday came to an end and Ariarne and I bid farewell to Mum who was staying on in Noosa for a little longer, extending her vacation to recover from the one she had just spent with us.

And it’s about then that the attention seeking began. Yep, it really did this time. As our plane ascended on our return flight to Sydney, I began to feel weakness throughout my body, chest pain, breathlessness, palpitations, dizziness, pins and needles and sheer terror. I pushed my buzzer only to be ignored. Of course the seat belt sign was still on and I was ONLY dying from a cardiac arrest!

I grabbed Ariarne’s hand,

     “I’m feeling weird, I’m having one of those attacks again”. The one’s which were apparently simple dehydration. Perhaps my attack was brought on by my “private” pre-flight safety briefing, especially designed for the physically challenged.

     “If there is an emergency, just stay in your seat” the flight attendant advised me. I nodded.

     “We’ll come and assist you.” When? I wondered.

“Is there any way we can get you off the plane without injuring you?”

I suggested that if it meant I was going to survive a plane crash I really didn’t care how they got me off, just so long as they did.

Seriously, the FA’s (in-house jargon for Flight Attendants, not that I have been in house – I’ve just heard) were fantastic and unlike an American Airlines incident I had a couple of years before, this time passengers were quick to offer assistance and seats.

Throughout my flight home to Sydney I lay across Ariarne and three very small seats. Yes size is important. The seats were small. I was squashed. My head was resting on the arm of the seat in a position I will never again be capable of moving it into (but more on that later). My bum actually fitted on the seat (another unlikely future scenario due to the weight gain part of the year that was to come). I lay there, my legs shaking uncontrollably as I counted the minutes till we were due to land. It was the longest flight of my life. The FA’s promised they would check for a doctor on board should I get any worse. I didn’t think I could get any worse and still maintain breath in and out of my panic stricken body. I was really scared and felt like I wasn’t breathing properly. I tried to relax but my long, slender legs (okay so now I was really hallucinating) were jutting out into the path of drinks trolleys, kids and passengers on their way to and from the restrooms and galley.

After what seemed an eternity but was actually just over an hour, we landed in Sydney where we were met by Landon, our brother, who took me home where I climbed into bed and hoped that somehow my comfy mattress, my pillow with a memory (it moulds to your head) and my snuggly doona would cure me of these weird ills I was feeling. They didn’t. And so from Sunday 16th December, the day I arrived home from my holiday in paradise, I did everything I could think of to sort myself out, find an answer or at least a diagnosis for whatever it was that was wrong with me.

Chapter 3 will be online soon – let me know if you want it!



  1. I’m keen to read Chapter 3. Or perhaps you could sing it to me and I could conduct you! At least we’d have a laugh!
    You have been dealt a fairly rotten hand in the game of life Nicole. As I’ve come to know you better, I am amazed by your courage and so impressed by your drive to stay involved with life. Every single day you are faced with such enormous challenges and still you have a ready smile and a cheerful, witty word to say. I’m full of admiration for you. Go girl!

  2. Definitely want Chapter 3. So wonderful. Keep going.

  3. As a systemic JRA sufferer i would first like to say well done on what you have achieved so far with your writting. You are raising awareness and touching many hearts with your work. We RA persons are the best for that job due to experience and you havent lost your sense of humour, brilliant. Please keep up the good work. May you be heard all over the world. Good luck. xx

  4. You absolutely MUST continue on with your story. I am beyond intrigued and can’t wait to hear the rest.

    I applaud you for your bravery and honesty and wit in such a situation. May your story be heard around the world.

  5. I am excited to read chapter 3…please continue. You are really a great writer. Through your suffering you have been given this gift of writing, also the gift to be able to help others through your writing. Thank you so much for sharing your story, you are an amazingly strong person and fantastic writer.

  6. Hi Nicole, you are a very talented writer, you have a way of taking the reader right into the story as though they are right there with you, through your struggles and joys and pains…and so many pains…
    and you make the reader want more! You got it Girl!

    I do hope that something will be found that will help you.

    Yes, i would very much like to hear more of your story. have you tried Hay House for publishing?
    Someone will surely publish you! (an E-Book?) and you dont need to wait for Oprah! I really hope you will meet her (I think you will!) I can even see a movie of your story! There is a real need for stories to be told like this, and as a disabled and in-pain person myself i can certainly relate. Please send me more!

    Wishing You the Best, and Thank You for Sharing,
    Love and Light,
    and gentle hugs…

  7. Please continue writing this! I’d love to read Chapter 3. You are such a wonderful writer and I think a lot of people, both disabled and not, could benefit from reading your chapters. As a fellow non-elderly person with arthritis, I love that you’re spreading awareness so people can find out that arthritis doesn’t just affect the elderly.
    Thank you so much! I can’t wait to read more!
    Best wishes!

  8. please continue the story – I am waiting for more

  9. Me, too. What they said! Soon, I hope.

  10. More please.

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