Tuesday, 28 November 2017

WHY WE NEED TO KEEP FIGHTING

Bonjour, 

Recently one of my friends in the M.E. community gave up her battle against living with pain and died of an overdose. Her mother has urged us to continue to fight against this horrible disease. 

It's hard to keep fighting when we live with constant pain, poor health, no hope, no effective treatment, lack of support, lack of understanding, lack of recognition and always having to fight for benefits. It's hardly surprising that many with M.E. take their lives. 

BUT we need to keep fighting so that this situation changes. 

I try to do this through my poetry and my blogs by increasing awareness and understanding as well as raising funds for the charity Invest in ME Research.

A percentage of all of sales of my books is donated to Invest in ME Research and I have set up Just Giving pages. 

So I'm proposing that during the first week of December all proceeds of the sales of any or all of my books will be donated to Invest in ME Research 

My books are available in paperback and kindle editions on Amazon. 

The following is a summary of my books so far and I give the links to Amazon UK but they can be found worldwide. 

My first book of poems is entitled 'My A- Z of M.E.'   

This book is a collection of poems about M.E. (Myalgic Encephalomyelitis). They have been written from personal experience of living with M.E. for over ten years and also inspired by others suffering the same. This book is a must read for those living with M.E. or anyone facing the challenge of living with a chronic and invisible illness. It can also be used to help friends, family and anyone wanting to understand M.E. I hope this book will make a difference to the understanding of M.E. and help others to no longer feel alone with their illness.

My second book of poems is entitled 'So many symptoms' 

This is my second collection of poems about M.E. (Myalgic Encephalomyelitis). These poems have been written from my own personal experience of living with M.E. for over 15 years. They are also inspired by and reflect the feelings of so many others who suffer the same as myself. My poems may also relate to those who suffer with a different long term chronic illness. This book is a must read for those living with M.E. or anyone else facing the challenges of a chronic and invisible illness. These poems may also help friends, family and anyone else wanting to better understand M.E.  I hope this book will make a difference to the understanding and perception of M.E.


My third book of poems is entitled 'Life, love, loss and a whole lot more' 

This is my third collection of poems and is about my life, the love in my life, the influences in my life, the loss of love, the loss of friends and family, the loss of good health, places and moments in time and a whole lot more besides. Whilst I have enjoyed reading poetry for most of my life it has only been in recent years that I have taken to writing my own poetry. Since becoming ill in 2003 I've had more time to think and reflect on my life. Many of the poems are personal to me. This book, which includes photos, will give you a glimpse into the world of 'The French Femme'.     

My fourth book is entitled 'Life, love, loss and a little more' 

This is the same collection of poems as my third book but without the photos so is more affordable for those with limited resources.   


We can all play a part in this fight, no matter how small. 

So please consider ordering one of my books in the first week leading up to Christmas. Perhaps it could be a present for one of your friends or family or perhaps you would like to have one of these books as a present for yourself. 

Join me in this fight. 

Merci beaucoup
et au revoir 

The French Femme xxx  

Saturday, 4 November 2017

UNREST

Bonjour, 

Recently I watched the film UNREST and found it very moving, even shedding tears at some parts of the film. 

Unrest follows a Harvard PhD student Jennifer Brea, as she chronicles her debilitating struggle with myalgic encephalomyelitis (or M.E., more commonly known as Chronic Fatigue Syndrome), a complex disorder often believed to be imagined in the patient’s head.

At the moment it's being screened in many venues and you can watch it in different ways here

I urge you to watch it if possible and share with your family, friends, your doctor and the public. We need to have better understanding of this illness and the impact it has on so many lives around the world. 

I looked up the word 'unrest' and this is the definition I found ' a state of expressing anger and dissatisfaction about something'. 

I believe in the case of ME/CFS it's the dissatisfaction and anger in the way so many people have long been neglected, abandoned, badly treated or mistreated, misunderstood, sidelined and forgotten. Enough is enough! 

This film is about Jen Brea's story and touches on that of others.  Yet everyone has  their own story. We all need to rise up and get our story told. 

I often do this through my poems and my blogs. 

There is a limit to how much the film can cover and include but here is a summary of some of the points I noted from the film Unrest 

  • the illness is often caused by a virus, though there are many other causes 
  • diagnosis is difficult and can take up to 5 years in some cases
  • there is often an acute severe phase
  • recovery is poor and unlikely after 5 years
  • it's twice as common as Multiple Scelrosis
  • there is a variable nature and level of the illness
  • it's likely that there are subsets in this illness     
  • there are many symptoms that are part of M.E.  
  • doctors don't usually study the illness at medical school and there are very few specialists   
  • when medicine has no answers what do you do?
  • you try all kinds of approach and treatment as we see Jennifer Brea doing so in this film
  • there are some controversial treatments like Graded Exercise Therapy where so many have been harmed
  • sadly for some suicide is the only option left 
  • we can sometimes look and behave normally but people don't see the crash and the post-exertional malaise that frequently occurs 
  • spending on research into ME/CFS is very low
  • it may be hereditary as it can run in families
  • 85% of people with this illness are female 
  • this statistic has contributed to the idea that it's all hysteria
  • all too often sufferers are told that it's all in their mind and treated as a psychiatric condition 
  • this illness has been around for a long time, has been called by many names including atypical poliomyelitis   
  • the death rate of M.E. is about 3%  
As I write this blog I'm feeling sad after hearing yesterday of the loss of another wonderful ME/CFS warrior yesterday Lara Dawn George Henderson. She was one of my friends on facebook. Although I didn't know her that well she was part of the ME/CFS community.  I know that she will be remembered for her enthusiasm and passion. My thoughts are with her family and friends right now. 

This is why we must all keep fighting, campaigning and raising awareness about the seriousness of this illness. We should support charities like Invest in ME Research.  And this is why I continue to write about this illness and donate a percentage of all sales of my books to Invest in ME Research. 

So join me in this fight and start doing something from today. 

A bientot
from the French Femme 
xxx