Last weekend I participated in an event on facebook to 'MEET THE AUTHOR'. It was kindly organised by the Fibromyalgia Awareness Campaign Australia and I would like to thank them for being able to participate in such an event.
This is a summary of the questions and answers during the event.
Rosalynde, what inspired you to write a book of poetry ?
Well I've always liked poetry and used to write poems about many things.
Then after I became ill I started to write poems about M.E. and invisible illness.
My poems are partly an expression of how I feel but also sharing the feelings of others who like me are going through the same emotions and problems.
How long have you been writing? And is poetry your only genre?
I have been writing poetry for many years for my own pleasure but in recent years I have concentrated more and more on writing poems about M.E. and invisible illness.
I also write a blog integrating my poems.
I would also like to write a book about my life in France but that all depends on my energy and level of health.
How long have you been afflicted with M.E. and what is your greatest struggle in coping?
I first became ill in 2002 with what seemed like the worst case of flu ever. However it didn't go away.
I was eventually diagnosed in 2003.
Since then I have had varying periods of relapse and remittance but generally I would say that I am moderately disabled.
I suppose the greatest struggle is getting others to understand and dealing with the unpredictable nature of the illness.
As like many people with invisible illness I often look well and healthy but don't feel that way.
So through my poems I aim to increase awareness and understanding.
What were your symptoms at the time of diagnosis and how was it diagnosed?
Besides feeling like the worst flu ever, I had no energy, fatigue, swollen glands, sore throat, pains in my legs, dizziness, wanting to sleep all the time but no matter how much I slept I still tired and unrefreshed.
Lots of tests were done at the time (and since then) to eliminate other conditions and illnesses. Of course they all came back normal! So with my history in the last year and all my symptoms the conclusion was made that I had Chronic Fatigue Syndrome (as they had started to call it).
It was a relief to have a name for what was happening to me but there was no real help and treatment on offer, apart from the suggestion of graded exercise!
Things haven't changed much since all those years ago!
Why choose the initials M.E. instead of by the other names the illness is known by and is this the trend overseas?
When I was diagnosed in 2003 I was told that the name had changed from M.E. but since then I have learnt an awful lot about the history of the name. So I prefer to go back to the original name that is also classified by WHO
If you want to learn more about the name and what the difference is between CFS and M.E. take some time to read about the background history.
And anyway like so many I hate the name CFS as it's so much more than just fatigue!!
What is your connection to Invest in ME?
A percentage of the sales of my book go the the charity Invest in ME
I have a fund raising page
Can you tell us a little about the organisation ?
Invest in ME is a small charity with big aims.
'Invest in ME (IiME) was set up with the objectives of making a change in how ME is perceived and treated in the media, by health departments and by healthcare professionals. We aim to do this by identifying the three key areas to concentrate our efforts on - funding for biomedical research, education and lobbying. Invest in ME aims to collaborate and coordinate events and activities in these areas in order to provide the focus and funding to allow biomedical research to be carried out.'
I understand that your book is available on Amazon. Is there a kindle version for Australian residents?
The kindle version is available in many countries throughout the world, including Australia
Do you have a favourite poem from your book that you would like to share with us?
That's very hard to choose just one but perhaps 'Acceptance' is pretty important for me and as it's so difficult to accept all the changes that come along with a chronic long term illness.
Do you think anyone with invisible illness and chronic pain will be able to identify with your book?
Although I mainly write about M.E. many of my poems can relate to anyone with a chronic and invisible illness. Since publishing my book and writing my blog I have received lots of feedback from others who are suffering the same. I think it helps them to feel less alone.
If anyone has any further questions for me please feel free to post below this blog and I will do my best to answer them.
From the French Femme