Thirty-six years ago, when I finished my nursing training, the world was so different. Patients I nursed, with chronic health conditions were admitted regularly for symptom management, or resided in public hospital beds for weeks, months or even years. The role of the nurse was in the physical caring and attempting to provide some quality of life.
As a young nurse, I never thought that I would end up with one of these long-term health conditions myself. How wrong I was. Four years ago, I was diagnosed with multiple sclerosis. MS was on my list of illnesses I didn’t want to get.
I have found the effects of my MS has made it difficult for me to keep working, so have made the decision not to return to my nursing career. Initially I found difficulty with the question “What do you do?” I am not visibly ill or disabled, nor old enough to retire.
Somehow it seems so important to others that I have a title, a purpose. MS has given me a new role. I now see myself as an advocate in the chronic, long term illness field. Advocacy for our clients has always been a nursing role, but often we have not been sufficiently resourced to be able to do this. Now, I don’t have to wait to be given the resource of time. Also, I now have the luxury to return to writing, which I have always loved, and to humour which I think is so important for the human psyche. In fact, if I think about it, I have a lot to thank MS for.
Two years ago, I wrote a short book, A Funny Thing Happened on the Way to the Neurologist. It was a way of talking about the realities of MS in a gentle and humorous way. I wanted people to have a better understanding of MS without being overwhelmed with medical and sometimes distressing information. I have just finished writing a follow up book which I’ve called Does my Bum Look Big with this Stick? It’s a modest, light-hearted look at dealing with the difficult and often embarrassing situations faced by people with chronic illnesses.
I produced this book at the lowest possible cost by using the Rimutaka Prison Print Shop to print and do the design work. They have been excellent to work with and have done a wonderful job. All other services, including illustrations and editing, have been donated.
It is my vision that these books could be distributed free of charge by fieldworkers to people with chronic health conditions. Many of these people are on low incomes or benefits and have challenging lives. I am hoping my book may give them a smile and also help them cope with some of the more difficult realities they experience.
I am currently raising funds through book sales and through grants. If you wish to purchase a book for $10 to assist with free distribution, or you are a nurse or fieldworker in the chronic illness field and you wish to obtain free copies for clients, check out www.pinkcottagepublishing.co.nz.