Thursday, 20 June 2013

My life story.

I will continue with the photos of my spoils from the Craft and Quilt Fair as soon as I am physically able.

Unfortunately, as you may have noticed me referring to it, I have a chronic illness.

I think it is time I explained a little about what is up with me. *rolls up sleeves*

     Firstly, my childhood was that of any average healthy, happy child and it wasn't until I was 15 that I really had any issues with my health. This is when I got Glandular Fever. 
     I was sick in August 2003, after returning from a completely sleepless night at Taronga Zoo in Sydney. I had been there with Girl Guides (yep, I was a guide), raising money for the homeless by "sleeping" overnight in the middle of winter, in a zoo, with about 5,000 other girls. 
    My patrol/friends and I were completely unable to sleep as everyone was settled down to sleep. After an hour or so of quiet talking amongst the rugged up bodies, we agreed to get up and walk to get the circulation going. We ended up making our way over to a set of picnic tables next to the elephant enclosure. We spent the wee hours until dawn huddling together in the sub-zero temps, next to the slow breathing shadows of the elephants.
     After a while there was only myself and one other girl awake, with my twin and the other girls dozing against each other on the benches, leaning forward on the table.
      Still restless, I walked over to the elephants and realised, like me there was a single elephant awake, standing on the edge of the steep slope of the moat that separated us leading up to the fence that I then leant against. She could only see from my shoulders up but I could see her eyes in the dim light, focusing very keenly on mine. We stood there for long time just looking at each other, not moving, other than from foot to foot to keep the cold from seeping in. After a long time of regarding me, she tentatively stretched her trunk out. She leaned as far forward as she could, one foot on the edge of the slope, head back and shoulders forward,  across the moat. Automatically, I stretched my right arm over the tall fence, as far as I could, standing on the tip of my frozen, stiff toes. We never reached, but I felt the warmth of her breath on my finger tips, and even now, it touches me inside, the odd connection we shared. I can't really describe the moment correctly. Her trunk was about a hands-breadth away from my outstretched fingers, but somehow she had touched me. Nature is full of unexplainable anomalies and not everything can be expressed through words.
    After breathing a few short puffs of her hot breath on my hand, she relaxed her trunk down and hung her head back into what I assume was a passive, relaxed and "ready for sleep" position. I slowly retracted my arm and watched her lean back from the moat, yet remain at the edge, her eyes facing me, until she fell asleep. I turned around to see if my friend had seen the exchange, however, the whole group were now asleep. I walked back to the picnic table and leant against my sister, accidentally waking her, and with her, a domino of girls leaning on each other. I relayed the story of what just happened and that, ensured none of us slept from then on as crazy theories, anecdotes and stories were shared until the rest of the crowd finally stirred, and we made our way home.
    The following days I slept through the days and nights, had crazy fevers and hallucinated melting walls. My family is medically inclined and so looked after me with a pretty solid base of knowledge for treating my symptoms. However, I managed to worry them enough consider taking me to a hospital. In the end, my fever broke and I gradually recovered. I returned to school a pretty fragile, exhausted, grey shadow of myself - but still determined to return to normalcy. 
     After three months, I wasn't improving. Showers would exhaust me to the point of having to sit for 20-30mins to recover my energy. I was very sensitive to touch, migraines would happen sporadically with no pattern or discernible trigger, my physical strength weakened, my stamina plummeted and my mood started slowly dropping as my body wasn't responding the way a normal horse-riding, canoeing, spelunking fifteen year old girl guide's should.
     After many doctor appointments, I was diagnosed with Chronic Fatigue Syndrome (CFS), which I was to  have for 7 years. I tried everything there was out there that was in any way reported to be a reasonable treatment. I visited countless specialists and allied health professionals. The daily exhaustion that was not relieved through sleep, random joint and muscle pain, migraines, sleep deprivation and chronic depression are how I remember my late teens and early twenties. I was able to fall asleep within about 20 seconds of lying down in a quiet room, about two minutes on a train (how I got to school)....and I had the freaky symptom of crazy looking twitches when I slept (that still continue) that always freaked people out.
    Through the last two years of high school I was at my worst. I would play it cool and try act normal at school, but as soon as I got home, I would fall apart. My family were at their wits end trying to help. There wasn't really anything that was helping. I had other health problems that would slide in and out amongst the CFS, but it would always be there to pull us all back down whenever we felt we were making progress. I had two bouts of hyperthyroidism, one resulting in about 1.5mm proptosis of my right eye (which is why it looks bigger), a lovely goiter which gladly went down and weekly blood tests.
    We tried a bagillion things for the migraines that were coming daily and finally found an anti-epileptic medicine that decreased them to about once a month or once every two months.
    I continued on from high school on to university with a UAI (university admission index) that was in my opinion completely sub-par. I ended up only doing two of the three English papers as I had a migraine in the middle of the exam and I felt so nauseous I had to leave. You weren't allowed back in. I went into a university course I knew very little about that with my UAI, they were very happy to have me. I could have done more challenging things, however, my awareness of my medical condition meant I knew I would probably fall flat on my face like in the end of high school exams. I had the skill and talent, I just was unable to perform to my academic potential as my body would work against me when I needed it to function at its best.
    I entered the Bachelor of Applied Science (Occupational Therapy). I was able to secure a disability assistance program, in which I had an agreement with the university that as long as I had documentation to support my medical problems (within reason), I was able to miss up to 60% of classes without penalty, and as long as I kept the lecturer up to date with assignments (to show I didn't leave it to the last minute) I could hand them in later than the rest of the year. I was lucky to secure these considerations, as I was absent for a considerable amount of class time. I managed a high credit average and I will admit I did just cruise along as I did not have the physical nor mental energy to stay up late like everyone else. I never studied for exams (and I'm still honestly still unsure as to how to study) nor had a job as I already struggled with the energy used up by university studies.
   In my fourth and final year of my degree, I was forced to take medical leave as I was not coping with my condition. I returned a year later. I attempted to continue again. Unfortunately, I had to withdraw. Originally it was medical leave again, I then realised I was not getting better, and the only semester I had left had 10 weeks straight of full time practical work in a clinical setting, simultaneously with two subjects. I was physically and mentally unable to perform this task. It was a heart-breaking decision to make. I was 6months away from a a career that helped people in my position. It was one of those cruel ironies of life.
    I stayed at home for six months and focused on my health. I slowly exercised more, my personal trainer friend tailored a graded plan around my abilities and my OT knowledge. I slowly improved with a combination of a multitude of medications, slow graded exercise and honestly, I think, time.
    I was eventally able to apply for a part time job. One day a week. Then a different job that was two and then three days a week. Eventually my stamina improved, instead of just wearing me out. Where before, if I pushed myself, I would pay for it for days, I was now getting small gains. I eventually started working fulltime as a casual and after three months of that we declared me CURED or at least as normal as I would get.

There are so many things I have probably forgotten, but this is the best I can remember for now. I am an open book. please, ask any question. I have no sense of privacy anymore really. After seeing a million doctors and specialists and knowing them for 20 seconds and then having to tell my life story in complete medical detail (more symptoms and icky stuff than the above tale), I have no trouble telling anyone what some would consider pretty private stuff. It's also a way of raising awareness of the illnesses i have experienced and also a way to vent. I will always answer honestly. Please feel free to ask anything, even if you think it's a stupid question, too invasive or embarrassing - I've probably been asked it before!


I will explain my current condition next time.

AND THEN.....get back to the quilt fair! I promise!

1 comment:

  1. Thank you for sharing your story. I am a Type 1 Diabetic so I know a little about having a chronic illness. I think the more you talk to people about it, the little bit easier it is to cope with it all. Xo