A few days ago, I went to my local hairdresser to get my hair cut and to chat with the pretty girl who does it about options for colour, as the reddish purple I‘ve been using lately fades too fast in Australia’s strong sunshine. It also doesn’t suit my red, swollen pumpkin face.
This girl, Anna, has long blonde hair, and looks like an archetypal Disney cartoon heroine.
When I first met her, four months ago, she was lively and animated. This day, she looked tired. Knowing that she had, some time in the recent past, also been on steroids, I was complaining about how I hated them - how fat I am, how I barely have anything that fits me, how I hate my puffed up face and the lack of sleep, and the loss of energy, etc, etc.
Then she told me she was living with something like chronic fatigue, and that she frequently has days when an hour after getting up, she needs to lie down again, because she's exhausted. She had been working full-time at the hairdresser's, but has had to cut her hours back, as she's not strong enough, and has been advised to try to rest.
"I’m only 25, I don't want to be resting!", she said. Poor kid! I felt so selfish & egotistical! I vowed to stop complaining right there and then.
One Good Day, Two Bad Ones
But it’s not that simple, and I figure I can complain here, even if I keep my mouth shut in public. I know I’m not as sick as Anna, but there are far too many days when these blasted steroids make me feel as if I am! If I have one good day, in which I feel almost normal (as long as I don’t catch sight of my face in the mirror), it’s almost inevitable that the next, and often the one after that, will be spent lying on the couch, barely able to move or think.
For example, yesterday morning I went for a gentle walk before breakfast. I went to the big local park, usually an easy 10 minute walk for me. I didn’t push myself, but enjoyed stretching my legs and breathing the fresh air, and got to the duck pond in 20 minutes.
Then I sat for about 20 minutes, watching the birds, looking at reflections in the water, loving the trees around me, enjoying the sight of people walking their dogs. I walked slowly home, sitting at a bus stop halfway along for another rest break. I was home about an hour after I’d left and I was feeling good!
After breakfast, I took my steroid dose, and promptly lost one and a half hours to the shakes, palpitations and energy drop. I lay on the couch, wrapped in a sweater, and dozed.
About mid-morning, I felt it lift a bit, and went into my office to attempt some freelance writing. I managed about two hours, slowly, of writing and reading research, but by lunchtime knew I had to give up. The afternoon was spent on the couch - and there was no cricket to watch, the only daytime tv I like! My eyes were so blurry I couldn’t read, but I managed a little knitting, in between shivering and dozing.
Today is a little better. My brain is working at half-speed, so I can just manage this blog, but my energy is barely above couch level. And my positive attitude is having difficulty maintaining altitude.
I know I will get better. I know I will be off the steroids in another six weeks or so. If I’m lucky, the ITP will truly be idiopathic and never return, though it’s far more likely it will recur on occasion, necessitating some use of the steroids in the future.
Sadly, I also know from what Anna told me, that it can take at least two years after stopping before the steroid effects wear off completely and I resume my normal face and body. If ever!
Always Look on the Bright Side of Life
Ever since 'The Life of Brian', I’ve tried to live by that motto, as I’ve faced many of the life crises other women my generation experience – marriage breakdown, retrenchment, severely reduced income, some truly nasty things in my past needing to be acknowledged and dealt with.
Why should this health problem be any different? So, I’m going to sing along with Brian!
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