Thursday, 4 February 2016

The Menopause and M.E and other books

Written by Gina Bailey.  Many thanks to Gina for this post.

I was 28 when my life was irrevocably changed forever by the condition ME, now commonly known as Chronic Fatigue Syndrome or CFS. A case of pneumonia and bronchitis did so much more than just lay me up for a couple of weeks and, almost 17 years later, I am still not back to my pre-illness self.
I have been lucky. My symptoms are generally not too severe, (although I am in the middle of the worse relapse I have ever had, so perhaps I should be touching wood and crossing my fingers as I type) and overall I have achieved a reasonable balance to my life. Well, as much of a balance as anyone can with this condition.
For the uninitiated, ME/CFS is a condition which is still very much a mystery. They do not know for certain what causes it and therefore do not know how to cure it. There are no tests which can give a definitive diagnosis. The symptoms are extreme fatigue especially after exercise (both physical and mental), muscle pain, cognitive dysfunction (brain fog, poor concentration and memory), post exertion malaise (where the effects of an activity can leave you exhausted 12-36 hours afterwards), poor temperature control, poor sleep patterns (and sleep that leaves you un refreshed), flu-like symptoms and tender lymph nodes. Some people experience skin rashes and digestive disorders. Oh yes, did I mention complete and utter exhaustion?
Some people with this condition are so exhausted that they do not have enough energy to sit or up talk. They are confined to lying still in a darkened room, unable to tolerate noise or light. Thankfully most are only classed as mild to moderate, leaving them house or bed-bound for part of the time. I have been lucky. For most of the last 17 years, with the help of afternoon naps and days where I have been able to rest enough, I have been able to cope. I have flares which require several days or perhaps weeks of taking it really easy and relapses which have left me barely able to function. This is the typical cycle of most people with this illness.

I published my book ME Rambles and Poems in 2013. It contains my observations and thoughts about life with this illness, poems and ramblings which I hope will help people understand how my life has been changed.
Before this I also wrote a book called The Menopause and M.E (CFS) after being diagnosed with an early menopause. I was worried about how the menopause would affect my symptoms but found very little information available. After contacting the ME Association I advertised for volunteers to share their experiences with me. I was surprised at how many women’s menopause had coincided with the diagnosis of ME or CFS so I covered the basics, information about the illness and the menopause generally as well. Rather than wait and approach publishers I decided to self-publish it through Amazon print on demand and for the kindle.]=
I had more women contact me after publication which brought up more questions. It was the first factual book I had attempted and was a learning experience. The more women I spoke to the more I wanted to find answers. The results from my first survey had provided some answers but, as one review complained, were ‘inconclusive’. Some women had found the menopause had brought an improvement, others had felt much worse. The effects of the menopause seemed as varied and individual to women with ME/CFS as for those without the illness. I was frustrated. If the results were inconclusive I could not give the readers a conclusive answer, only explain the variations. My most obvious error was that I had been so focused on the menopause that I hadn’t considered the combination of ME/CFS and post-menopause. I also learnt a valuable lesson. You can’t proof-read your own work effectively and not expect mistakes, especially if you have to battle with any degree of brain fog. I decided that perhaps this project had not reached its conclusion and decided to re-write it.
I compiled a much shorter survey and asked women to contact me again. This time it was a simple tick chart looking at the comparison between the effects of the menopause and post-menopause on women’s ME/CFS symptoms. Again I asked for women to tell me their experiences. I hope to publish The Menopause, M.E (CFS) & Beyond, focusing on the combination of ME/CFS and the menopause/post-menopause, more women’s stories and what conclusions the survey’s results point towards later this year, once I have had it proof-read by someone else.
I have also published a collection of poems and a book of short stories and flash fiction, both available from Amazon as paperbacks and for the kindle. Due to my present relapse I am struggling with a lack of stamina and the dreaded brain fog but this illness does fluctuate. While I may be at a low patch now, like many other people, I am hanging on for an improvement. I have accepted that life may never be the same as pre ME but that does not mean I have given up on enjoying life when I can.

Gina has another book, "Short Stories and Flash Fiction". This weekend (14th JUNE 2014) she is having a giveaway on this book. Please visit the page and leave a review.
Follow 'The Menopause and M.E/CFS on Facebook here.