MAY 2017 - AWARENESS MONTH

Bonjour, 

Today is May Day and in France it's  La Fête du travail et La Fête du muguet. 

Today is also the first day of a month of International awareness for the spectrum of illnesses called Chronic Immunological and Neurological Diseases which includes M.E. 

M.E. Awareness week is 11th - 17th May and 12th May is International Awareness Day.  

I hope in the month ahead, health allowing, to raise awareness and understanding of M.E. (Myalgic Encephalomyelitis). This will also include living with other chronic long term illnesses. 

It begins with the good news that at long last I have completed my second book of poems entitled SO MANY SYMPTOMS   

The paperback edition is now available on amazon in many countries  
Amazon UK, Amazon France, Amazon Com 

A kindle edition is also available   
Amazon UK, Amazon France , Amazon Com 

I want to thank all those who helped me with this book, especially Janet Smart who designed the cover and Stacy Hart who wrote the foreword for the book. We are all ill and so it takes a great deal of effort and determination to reach the final goal. 

We do this and sacrifice our own health so we can raise awareness and better understanding. 

We do this so we can raise funds for the charity Invest in ME Research and as with my first book a percentage of all sales will be donated to this charity. 

My first book MY A-Z OF M.E. was published back in 2013 where you can also find paperback and kindle editions on Amazon. 

It has taken me a long time, much longer than I wanted, to put together my poems for a second book. Being ill and life events prevented me from completing it sooner. However I believe that my perseverance is worth it. 

Throughout May I will also be reposting some of my old blogs and some new ones. 

I hope you will join me and share this blog and others to follow. 

Thank you

Au revoir
From the French Femme 
xxx

TOO BUSY

Bonjour,

I hope you're not too busy to take a few minutes to read my latest blog! 

Before becoming ill I had a full and busy life. It felt as if I didn't have enough hours in the day or days in the week to do all that I wanted to do or achieve. 

Now I feel as if I have too many hours in the day and days that seem to never end. But I just don't have the energy or feel well enough to do the things that I would like to do or need to do. 

I feel detached from the real world. 

Family and friends seem so busy with their lives.  

It reminds me of a Star Trek episode "Wink of an eye" where the crew of the Enterprise come across a race of aliens who have been poisoned by the radiations from the core of their planet resulting in an incredibly accelerated metabolism. So the crew are unable to see them and just hear a buzzing sound like an insect. They find the buzzing is actually voices at a sped-up pace. They are a race of beings who move through time at a rate so fast that they're all but undetectable. 

I too feel as if I'm in slow motion like the crew of the Enterprise in this episode and everyone else is moving so fast that they are almost unseen.  

It can feel like I'm forgotten. That just adds to the loneliness and isolation. 

Having a long term chronic illness can isolate us from family and friends. 

Do you feel the same?   

                                                  Too busy

You say you’re too busy

To come and visit me

Too busy with your life

No time to spare for me

You’re always so busy

And have no time for me

Too busy with your life

Have you forgotten me?

You always seem busy

No time to talk with me

Too busy with your life

To even think of me

You’re always so busy

That once used to be me

Now I’m isolated

And I feel so lonely

You say you’re too busy

But please come and see me

Just stop for a moment

That will make me happy

   

Au revoir 

From the French Femme xxx

TRAPPED

Bonjour, 

I'm sorry if this blog is somewhat negative and depressing but this is the reality for so many. 

Feeling trapped is common amongst people with M.E. and most likely for those with other chronic illnesses. 

We are trapped 

• physically by illness
• in our own bodies
• in our own homes 
• in our bedrooms
• in darkened rooms as we have become sensitive to all light and noise
• in relationships that may have become abusive
• dependant on others
• we feel alone and helpless
• perhaps feel suicidal
• feel stuck and that there is no escape
• feel that we there is nowhere we can go
• feel that we no longer have any control of our lives
• feel that it's going on forever without end
• feel that we are imprisoned 
• feel that there is no way out  
• feel trapped in an alternative world

Trapped

Inside this body I feel trapped

Hard to move and energy sapped.

A pain that keeps me in this shell

It’s like my own personal hell.

Unable to open my eyes,

Get dressed or out of my bed rise.

Like a bubble, smaller each day,

I see my life slipping away.

Cut off and in my home I hide,

To relinquish that world outside.

Isolated from all I’ve known

Now living my life all alone.

It’s like I’ve moved to M.E. land

A country hard to understand

No longer able to see me

That person I wanted to be.

This world is not of my choosing

And now there’s so much I’m loosing

Friendships difficult to maintain

My illness too hard to explain

My family all stay away

Avoid me, unsure what to say.

I want to end this trapped feeling

And to find a way of healing.

I want to break free from this pain

So I can start living again.

I want to escape this purdah

I feel I can go no further!

  

I live in hope that one day we will all be able to break free....... 

From the French Femme

xxx 

FRUSTRATED

Bonjour, 

When you suffer from a long term chronic illness like M.E. you go through different emotions.  

In this blog I want to talk about one of the emotions that many of us experience. That's the feeling of being frustrated. 

So what makes us feel frustrated? 

We may feel frustrated 

• by the reaction and response of so many doctors
• by the lack of change and progress
• by the feeling that we are neglected
• trying over and over again to find things that might help, spending lots of money in the process but rarely finding anything that helps. 
• by the lack of understanding
• by people's attitudes e.g. get up and get on with it, everyone gets tired, don't be lazy 
• we often don't look sick and so people assume that we are ok
• having to repeat the same points over and over again
• by the restriction of our life and our choices
• by so many symptoms 
• by insomnia
• by brain fog when our brains no longer seem to function
• mixing and forgetting words
• being stuck in the house, especially on a beautiful day
• by loneliness and isolation
• having to cancel so many appointments and letting people down
• our hopes and dreams that can no longer be realized 
• losing a purpose in life
• no longer being part of 'normal life and society'
• not being able to use or apply the knowledge and skills that we have studied and worked for
• not being able to make plans because of the variability of the illness
• not being able to pursue hobbies and interests
• not being able to go out to places like the cinema, theatre, church, restaurants or shops
• losing our independence, the spontaneity of life, just being able to go out when and wherever we want
• losing our social life
• not being able to converse with others
• the unpredictability of this illness   
• losing contact with people
• by just being ill all the time and for so long    

  You make me

Frustrated

So angry

And irritated

You make me

Frustrated

So tearful

And feel defeated

You make me

Frustrated

Uncertain

And disappointed

You make me

Frustrated

A failure

And my life`s wasted

You make me

Frustrated

Cry and shout

That you are hated!

Bottling up our frustration can lead to anger, tears, aggression, loss of control or even depression. I believe it's better to share our frustrations with others. Perhaps we should reflect on what is making us so upset and how can we deal with our frustration. Maybe we need to look at our life and our situation in a new way. Perhaps our frustration will ease with acceptance and when we try to change all these negatives into positives. 

In the meantime if you are feeling frustrated have a scream and shout and see if that helps!! 

A bientot

From the French Femme

xxx

SO MANY SYMPTOMS

Bonjour,

Bonne Année et meilleurs voeux pour 2017. 

It's that time of year when we look back and reflect as well as thinking about the year ahead. 

For me personally, 2016 brought a lot of changes in my life. Inevitably this has had an effect on my health and I've had some setbacks. 

It's been 14 years since I first became ill and with what seemed like flu that never went away. I like to think that over the years since then I have learnt how to manage my illness but sometimes it surprises me and reminds me that it's a permanent part of my life. 

M.E. is a complex and forever changing illness. There are so many symptoms that fall under the umbrella of M.E.

You can find different lists of symptoms and one of the most comprehensive is on the web site Hummingbirds' Foundation for M.E.  

These symptoms are forever changing. Sometimes new symptoms develop. Not everyone suffers with all the same symptoms and there are different levels of disability.  

However there are certain core symptoms which are required for diagnosis. The latest criteria is The ME International Consensus Criteria 2011 

A patient 

• will meet the criteria for post-exertional neuroimmune exhaustion (A), 
• at least one symptom from three neurological impairment categories (B), 
• at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C), and 
• at least one symptom from energy metabolism/transport impairments (D)

There are so many symptoms that it can feel like a complete system breakdown that affects every part of the body. And what's more many of these symptoms are difficult to see or explain. 

So in order to continue to raise awareness and understanding, in 2017 I hope to publish a new book of poems entitled 'So many symptoms'. So watch this space!

  

So many symptoms

There are so many symptoms

Which come along with M.E.

And make it extremely hard

To diagnose properly

There are so many symptoms

How do you know it`s M.E.?

With no one simple, clear test

It seems like a lottery.

There are so many symptoms

Which are confused with M.E.

No wonder there is much doubt,

Delay and anxiety

There are so many symptoms,

Which are difficult to see.

So doctor`s don`t believe us

And question our sanity

There are so many symptoms

Which come along with M.E.

A complete system breakdown

That affects the whole body. 

A bientot

From the French Femme 

xxx

TIME

Bonjour

I want to dedicate my last blog of 2016 to my Uncle Graham who has been battling against poor health for many years now. 

Sadly he is now losing that battle and his days are numbered. 

Yes this is sad but like myself he turned to writing poetry to express his thoughts and feelings and to write about the people in his life. 

I've chosen to share the one he has written about time. 

I think we can all relate to it. 

Time is precious and we should live each day as if it's our last. 

So this christmas whatever you are doing, wherever you are, whoever you are with be grateful and make the most of it.    

A bientot 
From the French Femme
xxx

A poem called time

Time is such a little word

Yet so vital to our lives

We all forever chase it

As bees around their hives

Time is all around us

Although it cannot be seen

It is forever moving forward

Yet we all know where it has been

It constantly controls our pace

And for me the reason’s clear

Most days it is like we are in a race

And to lose fill us with fear

We should take time to contemplate

How to slow this lifelong ride

For I believe it’s never too late

To follow nature’s guide

As we all have allotted time

From the moment we are born

We each must find our way through life

Embracing each new dawn 

Time alas will bring dark days

Along with pain we all must bare

Yet through time we’ll find a way

To lift the burden of despair

Given time we will discover

Time shared will set us free

Be it friendship or a lover

Togetherness is the key

Time is a consultant throughout space

Predating all before

Yet as we as others have our place

As time will show I am sure 

 

PHOTOS

Bonjour,

This blog is going to be a bit more personal but one you can probably relate to if your life has also changed because of chronic lifelong illness. 

They say that you should never look back in the past or too far in the future but live in the moment.

However I have found myself recently looking at old photos of myself and realise how my life has changed.

I once had a job and a career. 

I once used to enjoy many activities outside of work, in the evenings and at the weekends.    

I once used to take part in conferences and meet interesting people.  

I once had an active social life. 

I once used to be able to join in fully with family events and occasions. 

I once used to go on foreign holidays. 

I once used to be able to take long walks and see interesting places. 

I once used to enjoy playing tennis, swimming, cycling and hiking. 

I once felt well and healthy. 

Now all that has gone and my life has changed. 

My life is limited and restricted by this illness M.E. 

So when I look back at photos I'm reminded of what my life used to be like and I feel sad. 

Some may say that people with M.E. don't look ill but I can see the illness and suffering in my eyes when occasionally a photo is taken of me now. 

Well I had better put my photos away. It's not good to look back but it does remind me from time to time of what I've lost. 

Instead I should try to be grateful for what I still have.....

A bientot
From the French Femme xxx

Photos

I`m looking at photos

Of those days from the past

Which were full and active

Sadly they didn't last

When looking at photos

It`s a stranger I see

My life has changed so much

By this illness in me

I look back at photos

And feel upset to see

A different person

One healthy and happy

When I look at photos

I don`t recognise me

An echo of myself

Of how I used to be

If I look at photos

Taken more recently

I look like a shadow

Of a person once me 

I look at my photos

And wish for the old me

That one in the photos

Young, fit and healthy.