Sunday 24 January 2010.

June 14, 2010

The very moment the first symptoms occurred, I can pinpoint.

The very moment when I noticed something was wrong but had no way of knowing it would lead to this.

Three months on and what began as a strange stiffness in my left shoulder, which I almost proudly credited to my three pointer at basketball the night before, has developed into a full blown chronic disease, one which could very well be with me for life and I am only just starting to get my head around the new limitations it has imposed on my lifestyle.

I was diagnosed on Friday, although I knew what it was already after my rheumatologist had noted an abnormality in my blood tests and we were just waiting for confirmation. During that six week long wait I did my research. I read many medical journals and websites, I googled blogs and joined Facebook groups. So when the words Mixed Connective Tissue Disease were declared on Friday I was already familiar with the debilitating illness, the symptoms, the treatment, the side effects and most terrifyingly, the fact that despite treatment available, those bloggers still seemed to be suffering.

I could try and go into all the detail of what this auto-immune disorder is and what it is doing but really, if you want to know those facts you can read a medical website, I’m no expert on the science behind it, but quickly I am becoming an expert on the experience of the disease and so this is what I want to share.

The pain, the limits it has imposed, the emotions behind getting through everyday, the practice of being on a ridiculous amount of medication and pain killers, more drugs than any 26 year woman should ever have to put in her body on a daily basis and whatever other effects I experience throughout this un-wanted journey.


They say that youth is wasted on the young. Now I think, health is wasted on the healthy. Of course I don’t judge, because that was me 3 months ago, you have no reason to appreciate your health because you don’t know any different. The funny thing is, I also find myself thinking youth is wasted on the young as I feel more of a connection to and an understanding of the older people in the community as they hobble down the street and grab onto the rails as they pull themself up onto the bus and uncertainly shuffle down the aisle to seat where they lower themself into a seat relieved that that is done and now they can relax until their stop, where it all begins again.

The difference of course is, I am not 80, I am 26 and I can feel the eyes on me as I suffer to my seat, if I’m lucky enough to get one-because I’m not pregnant, I’m not old and I don’t walk with a cane so there is no way for people to realise that standing for a bus ride is an extra effort I could do without.

Anyway, as usual my thoughts have gone to my daily struggles rather than what I was trying to focus on, when I was healthy.

Let’s take a journey back, say, 4 months, beginning of October. I had only recently turned 26, I was working my Monday to Friday 9-5 job in Marketing/PR for a travel company, I was heading to the gym twice a week (I used to lie and say three times but really, it was two) I had basketball on Wednesday nights, I would often go out on a Thursday night for a couple of drinks and then a couple of times on the weekend as well. Drinking, dancing, being with friends, getting home in the early hours of the morning. Waking up at 10 with a hangover, heading to our favourite breakfast place, Jack’s Cafe for breakfast (I don’t think the staff there ever saw us looking good and not hung over)

I would do a few hours of house work, cleaning the bathroom, kitchen, lounge and my room, washing my clothes, doing the groceries, bringing it all back on the bus and up 6 flights of stairs to our top flat then lazing around for the arvo or heading to the beach or for an  hour walk around Centennial Park. Then I could get up Monday morning and do it all again.

Another major part of my life was travel. Whether it was domestically for work, travelling by car around NSW or interstate by plane. Something I didn’t think too much about, it was a part of my job, it got me out of the office and doing public speaking which I love and although I had to carry a lot of equipment I never found it that challenging.

Having lived overseas in the UK when I was 21.staying for two years I developed a love of travel whilst in Europe and since then also went to Thailand, the USA and Canada. When I was younger I went to Japan and saw a bit of Australia and my next trip was booked to Ireland, a working holiday where I was going to indulge in my passion for Irish culture, music writing and humour.

Unfortunately, due to my physical limitations and fatigue and the crippling effect this illness has had on my emotions, I cancelled my flight a few weeks ago and have resigned to stay at home. It is the best decision for me, for now.


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