Freezing for a good cause

It was 8am when my alarm went off: an assault on my ears at such an ungodly hour. I stumbled out of bed, got dressed in a pair of cargo army pants, a small white t-shirt, a footy jersey, a hooded sloppy joe, two white cotton socks, two black gloves and a brown scarf. Dressed, I went to the bathroom, brushed my teeth and walked out the door bound for the train station. Sister, presumably, had a similar morning and soon joined us in the car five minutes after the scheduled departure time (it never ceases to amaze me how she is the most vocal the night before about the need to leave on time, but also the one who is running late in the morning). Upon stepping out of the house I noticed with some trepidation that the temperature was so close to freezing that it just doesn’t bear mentioning. I shuffled to the car, watching my breath cascade before me.

The air conditioning on the train to the city was on ‘cold’. I sat there, shivering slightly, listening to my mp3 player as I dozed in and out of consciousness all the way to central. When the train arrived it was like waking from a deep sleep for the second time that morning. I disembarked, convinced that the outside temperature couldn’t possibly be any colder than that of the train but I was bitterly disappointed as the ambient temperature plummeted as I stepped through the door. The next train was equally frigid. The air conditioning didn’t appear to be working at all, and the windows were open. As the train hurtled through the Sydney underground I tried to keep warm by hugging myself like a lost hiker in the snow.

Upon arriving at Chatswood, salvation was at hand in the form of a hot hot hot cup of coffee and a stroll around the (blissfully warm) plaza. I was in the mood for some retail therapy but didn’t quite know what I wanted beyond a nice warm bed to curl up in until I could feel my toes again. I wandered listlessly around bookstores, looking for more Paul Monette but realising very quickly I would need to go to Borders in the city for his books. I noticed that HMV was having a sale so I wandered around as my legs screamed at me to sit down, dammit, before they went on strike. I ignored them when I saw the “nostalgia” section and found, to my utter jubilation, a copy of Whatever Happened to Baby Jane, starring one my favourite actresses, Bette Davis, and the illustrious Joan Crawford.

It’s one of my favourite movies, and I’ve been itching to own it for a while. It’s the story of the ageing Baby Jane Hudson (Bette Davis), a child star who never really grew up, and her sister Blanche (Joan Crawford), who always lived in the shadow of her beautiful sister when they were kids but who became a successful actress in her own right as a young adult, and their life together as fifty-somethings. After a terrible car accident, Blanche is left wheelchair-bound and dependent on her sister who is rapidly descending into madness. The movie is shows Baby Jane’s descent into insanity and Blanche’s struggle to break free from her crazy and overbearing sister. I highly recommend it.

With my brand new DVD in my bag, I trundled off to my appointment with legs moaning. Now full of hot coffee and pain killers I felt more alive and ready to face the world.

I’ve been asked by the ME/CFS Society to speak at an upcoming forum run by the teachers’ union health insurance company. The forum’s audience will be teachers and we’ll be speaking about the impact of ME/CFS on student’s education, and how to better accommodate ill students in the classroom and wider school environment. I will be speaking with another girl my age who has had ME/CFS since high school (like me), however unlike me, she had a terrible time at school. The idea is that we’ll talk about how we were treated differently in relation to similar issues and how we could have been treated better. Unofficially, it comes down to a lack of empathy on the teachers’ part in the case of my co-speaker, who had teachers tell her to her face she was a whinger and school-phobic.

Unfortunately, my co-speaker was unable to make the meeting so I met with the Social Welfare Officer and we ended up talking for a few hours about my history and my “survival tips”. The SWO is new to the job and is eager to learn more about the condition, so she took notes and devoured everything I said with rapt attention. She is writing a guide for youth that she wants to develop to a twenty-page booklet to send out to newly diagnosed young people (high school or uni students) but admitted she is only just learning details of the illness itself, so she was eager to get my input.

The funny thing is that although I could give my input and share my thoughts on strategies and coping techniques, I am a terrible role model. I can tell a newly diagnosed person with ME/CFS (known in local shorthand as PWC) how they “should” act and what they “should” do until the cows come home, but the fact is I don’t do it myself. For example, I explained the importance of good sleep hygiene—the need to go to bed at the same time each night, get up the same time each morning, not sleep in (too much) nor sleep too late, and what you might do if you can’t sleep—however, I often go to bed late, wake up late, and when I can’t sleep I get up and have a smoke. So, yes, I told her that although I know the mechanics of healthy living, I’m really not an ideal poster boy for good healthy living. She smiled, laughed, and said “well we won’t write that bit down” and got on with things. It’s a great project, and something I’m very excited to get involved in. I have made so many mistakes, and consequently learnt some valuable lessons that I think many newly diagnosed PWCs could learn from too.

I do admit that my arduous process of self growth and self discovery was complicated by the question of my sexuality and my clinical depression, however much of it is fairly universal to all PWCs. I made a point of talking about depression and the need to mention it somewhere in the booklet. It’s a tricky subject because many people with ME/CFS adamantly dig their heels into the dirt at the barest whiff of the “d-word” because so many sceptics callously write ME/CFS off as being “merely depression”. I totally understand that. However, I think it’s important to acknowledge that some young PWCs (like me) had underlying, concurrent, clinical depression that was present before the onset of ME/CFS and that some young PWCs develop “reactive” depression as a symptom (but not a cause) of ME/CFS. After my messy episodes of depression, many of which involved sharp objects and pain killers, I know only too well how important it is for young people with depression to ask for help. Unfortunately, I also know only too well how hard it is for young people with depression to actually ask for help; it took me a few years and many months of fairly serious (and self-destructive) depression.

I can’t wait to get this booklet printed and out on the streets, and I can’t wait to get out there at the forum and begin the process of re-education, to show teachers the realities of this illness and dispel the myth that it is “just being tired”. So, in conclusion I froze my butt off for a good cause.