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.

Friday, October 24, 2014

Well Meaning Advice

If I had a penny for every time someone has given me advice, by now I would be a very wealthy woman! Often advice comes from people with no medical training or personal experience with the disease you are suffering from. Although well-meant and with the best intentions at heart, advice like this drives me crazy. I’m sure I’m not alone, and many people suffering chronic ill health have to put up with receiving a gamut of advice, some of which is totally inappropriate and occasionally just downright dangerous.

Knowing when to filter out such advice is easy: if they don’t suffer themselves or are a caregiver of someone with the same disease as yourself, a qualified doctor or recognized support group / organization specializing in your particular illness – let their advice go in one ear and out the other. On occasion, to satisfy the person’s intentions of their goodhearted advice, I check out thoroughly, researching with the help of the Internet and sometimes conferring with a specialist in Gaucher or Parkinson’s. Some of the advice or suggestions that have been made to me over the years have been amazing (and I don’t mean in a good way!)

However I would like to mention that sending a link to a newspaper article that is pertinent to someone’s disease, with information of new discoveries, medical trials or findings, is welcomed and received in a positive light, giving a feeling of hope.

A healthy person cannot imagine what it is like to literally battle each day against the symptoms of chronic disease, and in my case I’m battling two diseases. I sometimes feel a little outnumbered, but like David and Goliath, we all know who wins!

So should you be guilty of giving unverified advice about an illness you know little or nothing about …..please think carefully before you speak!

We are nearing the end of Gaucher Awareness Month, but being aware should be continual and not restricted to merely one month a year. I have written about how traditional medicine and alternative medicine can work side by side and invite you to take a look at my article this week in The Huffington Post.

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