Monday, February 15, 2010

A day in the life

It's got to be 35 degrees in my room, the windows are blackened out with heavy coverings and apart from a slight light seepage from the side of the dark coverings, the only other light comes from my laptop and low watt lamp (and it still needs to be lower).

I am sitting on my bed writing on my laptop, I have to venture out to the freezer every half hour to exchange ice packs as the fan doesn't quite cut it at keeping me cool. It's hot.

I spend most my days in the dark, reading, writing, surfing the net and emailing, just holding out for dusk so I can enjoy a swim and watch flocks of rainbow lorikeets frolic cheekily from tree to tree squawking furiously about their day. I just float enjoying the weightlessness on my aching body, the coolness of the salt water in the pool, and do a few stretches. It's my favourite part of the day.

When I have to go out during the day, I have to be completely covered up - avoid as much sunlight as possible. Oh and did I mention I live on the Sunshine Coast? It's no mean feat believe me. Someone suggested I wear a burqa - it may be a practical alternative but it's against my religion.

If I don't cover up and avoid all sunshine, I suffer with neurological symptoms and extreme fatigue later on as my vitamin d levels (the hormonal part) increase and throw me into a hormonal mess. So, I mostly only go out at night (my flatmate endearingly calls me a vampire).  It is the time I function better and I am trying to come to terms with having to wear dark glasses even when I go out at night! How do you do this when eye contact is an important part of communication? I will figure a way, I guess blind people do it all the time. The good thing is I can check someone out blatantly and they would never know. I have had some funny looks from people - perhaps they think I am someone they should know in disguise?

I need to wear glasses designed to block out light for people with low vision - no I don't have low vision - but I have become extremely photosensitive, so I can see perfectly well outdoors with glasses designed to provide only 2% light. It adds to my already super sensitive hearing powers. Superpowers?? No not really, apparently it's all part of the healing process. My 'indoor' glasses allow 10% of light and on a bad day (night) I can't watch tele without them on.

I eat veggies, veggies - oh and did I mention vegies??? (Note to self: learn to make different dishes with veggies - it's getting a bit stale). Oh and a few rice cakes, hummus and I have to admit the occasional treat (usually an ice cream or 1/2 a chocolate bar). I figure allowing myself a treat once a week allows me to forget about it the rest of the week. This method has worked well for me in the past, otherwise I know I would pack it in too soon. And it's gotta be a long term thing.

So how does anyone get to a place so desperate where they are prepared to restrict their lifestyle to such an extreme? How did I get here? Well it's been a long journey. Over the next few blogs I will endeavour to unravel it and hopefully help myself to make sense of my life, this illness, my choices, and maybe even bring some solace or inspiration to someone else along the way.

This situation has stripped away much of what would be seen to make up 'my life' (my career, my boyfriend, my photography, my energy and vitality, social networks, dancing etc) but it has left me with the gift of time and contemplation to find out more about myself without the trappings of labels and expectations. It's back to basics. Despite the obvious frustrations, I have a sense of anticipation to see what emerges in my life, and invite you along for the ride.


  1. Ah Bex's hmmm intriguing, I'll be looking forward to reading your blogs as you unravel your life. I love the heat, but not that hot. MEX

  2. Are you allowed to use an air conditioner?