About me

I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.

Monday, June 10, 2013

Being ill is a full time job

Chronic illness can literally take over your life given half the chance, and submerge any sense of normality.  A young and rather inexperienced social worker once asked me "What do you do at home all day?" Stunned by her question, it took me a second or two to gather my thoughts before I answered. I realised that as a healthy young able bodied person she probably didn't understand, how simply getting out of bed, washing, dressing and having breakfast, which most people think nothing about, for anyone suffering ill health, these mundane daily activities are major. It takes me far longer and much more effort is expended in these relatively simple acts. By the time I have finished breakfast I am already exhausted. I have various physiotherapy exercises that I try to adhere to each day, as any form of exercise or movement is extremely important when suffering Parkinson's, and this too takes time out of my day. I am supposed to rest each afternoon, which all depends on Parkinson, whether it will allow me to lay down and sleep a while, or if it decides to drive me to distraction. Doctor's appointments, check-ups, tests, ensuring I never run out of PD medications, I am in constant contact with our family doctor and pharmacy and simply taking care of myself to the best of my ability is a full time job. Let's be brutally honest, getting through each day with one's humour intact and a smile on one's face is in itself a huge accomplishment.

The social worker began to get the picture, and then asked if I did anything else to occupy my mind. I told her that I write, "That's very good" she said in a patronizing voice as if praising a child. It was at this point I thought the young woman needed to hear exactly what I have been doing with my time. I showed her the books I've written, my daily blog that is read in over 70 countries around the world, articles I write once a week for The Huffington Post which has a readership of 1.2 million per month, and told her of my campaign and public speaking engagements as an advocate for Gaucher and Parkinson's disease. By this time her eyes were as wide as saucers, her mouth dropped open, and the tone in her voice had changed considerably. She now knew how I spent my days. Being ill is literally a full time job, especially when you're stubborn like me and wont give in. I refuse to let Parkinson's get the better of me, I'll fight with every fiber of my being! By the way in case you're wondering if this particular social worker ever returned; I've never seen or heard from her since!

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