Living with Chronic Illness – Miss Pixie

As promised, now that the gallery exhibition is over, here are the brave words of one of my models.

Miss Pixie flew out from Sydney for me in 2012, lugged costumes with her, & spent 4 hours at a hairdresser to alter her hair for a character.  We had a very full-on week of sewing, prop making & set building, before finishing it off with 5 character shoots in a single day.  She did all of this with a health issue that means some days, just sitting up is literally more than she can do.

This woman is amazing, wonderful, brave, beautiful, & strong.

Miss Pixie

I have been living with chronic illness for nearly 14 years.

At times I have been well enough to work or study part time and to live independently.

Currently I am living with my parents, with my mum as my full time Carer.

Some days I am well enough to leave the house. Often I am not. When I do go out, I use a walking stick or wheelchair and I am unable to do activities two days in a row.

On bad days, my back will ache, my ankles and wrists and knees hurt and my legs feel like jelly if I try to stand up. Sitting up on my desk or at the dining table takes a lot of energy – I can’t manage more than 15 minutes at a time, and I hurt the whole time. My limbs feel really heavy – moving them more than a little is a big effort.  Long car trips are always a struggle for me, pain wise, and today was no different.

When I’m well (ie able to work/study part time and/or live independently), I don’t feel this particular type of pain except on rare bad days – maybe once or twice in a year. And feeling that pain always scared me because it wasn’t a kind of pain I ever felt except when my illness was flaring up or in relapse. There’s a particular…flavour, shall we say, to the kind of pain that’s impossible to describe.

But when I’m in full relapse, as I am now, the pain is almost constant. Constant in the way the hum of your computer is constant. It’s there, you’re aware of it, but it doesn’t always register if your attention is on other things. It’s not a pleasant sound, but it’s bearable. It mostly comes into your awareness when the hum changes – when it stops or gets louder.

Sometimes, the pain is worse. Like the sound of the fan in your computer struggling, working overtime, making a noise that just doesn’t sound healthy. It gets harder to ignore and you have to do something about it. In the case of a computer, you close some programs and/or reboot. I have a hot bath with epsom salts, use a heatpack or take some painkillers.

Then sometimes, the pain is just agony, and using a computer analogy is useless because you just want to cry. Your muscles and joints and bones, every fibre of your being, is aching. It hurts. And there’s nothing for it but to take the strongest painkillers you have and try to sleep it off.

I feel strongly that chronic illness and disability are too often overlooked and misunderstood in our society and need to be made more visible. As such, I am glad to be a part of this project.

– Miss Pixie