ON A TOUS QUELQUE CHOSE DE JOHNNY HALLYDAY

Bonjour, 

I'm writing this blog 'en tristesse' because of the death of Johnny Hallyday yesterday, the 6th December 2017. 

Yes I know this isn't my normal type of blog but he has been part of my life since becoming ill in 2003. 

It's strange how sometimes one change in your life can lead to so many different things that you never imagined. 

When I became ill in 2003 I felt like my world had come to an end. I felt so ill and thought that I was dying. I could no longer do the things that I loved and lost all interest in life. 

Then out the blue I met a french man. We fell in love and he introduced me to Johnny Hallyday. I didn't really know much about this french singer before but as soon as I listened to his music on the cd 'A la vie, a la mort' I was hooked. I suddenly felt that maybe I had a chance of a new life and that all was not lost. I had something to take my mind off my illness, all the suffering and the pain. 

Later I moved to France and married my french man. Over the years we enjoyed and shared our love and passion for Johnny Hallyday. When able I went to see Johnny Hallyday live in concerts. They were always amazing and so emotional. What a showman! 

So today I mourn for the loss of Johnny Hallyday and for the marriage that has also ended. 

I have so many memories, some very special. 

It would be hard to say which is my favourite song but perhaps  'Vivre pour le meilleur' is the one I would choose as it reminds me of love in my life and striving to be better, striving to do the best I can despite all my health difficulties and the problems I face. 

This poem is my small tribute to Johnny   

Johnny Hallyday

On a tous aime

La vie sans toi

Sera pas la même

Johnny Hallyday

Nous a quittés

Beaucoup de larmes

Depuis j’ai pleuré

Johnny Hallyday

Repose en paix

Toutes les chansons

On oublie jamais  

I have used a lot of tissues in the last 24 hours and will probably need more in the next few days. 

Adieu Johnny and rest in peace. 
Gone but never forgotten
All my love 
The French Femme xxx

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  

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.

You can watch the film here and as from now it's available to watch on YouTube 

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, side lined 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 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

ALIVE BUT NOT LIVING

Bonjour, 

This blog is a revisit on the theme and my poem  ALIVE BUT NOT LIVING of which wrote about in January 2014. 

It reminds me of a quote from Spock in Star Trek " It's life Jim but not as we know it". 

Yes I have a life of sorts but it's not as it used to be before becoming ill. 

I'm alive but I don't feeling like I'm living. 
 

I don't know about you but I'm constantly reminded that other people have a full and busy life. They have a 'normal life'. 

Whereas I feel like I'm alive but not really living. 

A normal life means 

• going out to work 
• having a career
• enjoying a meal out at a restaurant
• able to socialise with family and friends in a bar or elsewhere
• taking a holiday 
• able to drive
• able to use public transport
• going out for the day to visit a place of interest
• able to pursue sports and physical activities eg swimming, tennis  
• going for a walk in the countryside 
• enjoying interests like yoga, choir singing   
• going shopping 
• being able to go to concerts, films or the theatre

When I speak to family and friends they tell me about all that is happening in their lives. In comparison my life seems uneventful and boring. 

My life is one where I am forced to rest and pace in order to avoid post exertional malaise or a relapse.

My life means

• unable to do any work
• abandoned career
• no longer able to go out and enjoy a meal in a restaurant
• unable to entertain at home
• difficult to socialise with family and friends
• most days alone at home
• a holiday will only lead to a relapse  
• unable to pursue any sports or physical activities 
• unable to drive or use public transport
• any walk outside of my home leads to post exertional malaise
• unable to pursue any hobbies and interests outside of my home
• shopping online 
• only contact is on social media which is a lifeline 
• suffering from a never ending malaise, lack of energy, pain and many other symptoms
• sleeping long hours both day and night 
• my bed and settee are my favourite places I visit!   

I'm sure that you can add to this list. Of course it depends on your level of disability. 

Anyway writing a blog like this takes enormous effort so I need to go and have a  lie down and have a sleep! 

Bonne nuit et Au revoir 
The French Femme xxx😪😫

SO MANY EMOTIONS

Bonjour, 

I seem to be crying a lot lately. It's either something on the news, a sad film, or a post on Facebook. I've gone through quite a few tissues 😢 

I know that emotional symptoms are a part of M.E. and it's not just me. 

The emotional symptoms include mood swings (emotional lability) - crying easily, excessive irritability or intense emotions such as rage, terror, overwhelming grief, anxiety, depression and guilt. Anxiety and panic attacks may occur. These emotional symptoms in M.E. seem to be linked to exacerbations to an increase in physical symptoms.   

ME Is Often Accompanied by Emotional Problems, but Is Not Caused by Those Symptoms 

Emotional lability is a characteristic feature of ME [1,2,3,4]. According to the last patient population study [3], 98% of the 420 ME patients reported experiencing “emotional disability”. Other emotional symptoms reported in cases of ME [4] include “outbursts of irritability“, impatience, anxiety, and depression. However, it should be emphasized that “emotional lability” and other psychological sequels are caused by ME (likely due to cerebral dysfunction), and do not cause the symptoms.

Even Dr A. Melvin Ramsay wrote 

'Emotional lability is often a feature in a person of previous stable personality, while sudden bouts of uncontrollable weeping may occur. Impairment of judgement and insight in severe cases completes the encephalitic component of the syndrome.' 

That makes sense because when I feel more ill I also feel more emotionally vulnerable. My long term and close friends have also seen and remarked on the changes they have seen in me. It's as if I've gone through some sort of personality change!  

Since becoming ill in 2002 I've gone through all emotions of one sort or another. I'm sure you can also identify with them. 

One of my poems is about those emotions. 

Emotions of M.E.

Angry

When I`m treated like a fake

Is it worth the energy to educate?

Hurt

By many a cruel comment

You've no idea of my pain and torment

Fed up

Of those who can`t understand

Think I am well and don`t need a helping hand

Sad

I `ve lost family and friend

Because this illness they can not comprehend

Lonely

Most days I spend all alone

No person I see or speak to on the phone

Disappointed

Not to make that planned trip out

Leaves me feeling like I want to cry or shout

Upset

When I`m confined to my bed

I need to rest my tired body and head

Hate

Having no control in life

How can I plan to do anything I like?

Grieved

I feel my life has ended

So much lost with no chance it can be mended

Depressed

As there`s no ending in sight

Hard to continue this unrelenting fight

Stressed

By benefit I must claim

But how difficult I find it to explain

Scared

When I can`t breathe properly

Feels like my life is slipping away from me

Frightened

By nightmares or a strange dream

That seem so real and lifelike, what do they mean?

Anxious

And panic with any stress

Which makes my symptoms worse and causes distress

Annoyed

When I can`t recall a word

I feel brain dead, confused and somewhat absurd! 

Distraught

So many tears with this pain

All I want is to feel normal once again?

Frustration

By the ignorance I find

From doctors with no answer and doubt of mind

Despair

After all kinds of treatment

Thinking there`s no cure apart from heaven sent

Exasperated  

When sleep eludes me each night

Even though I`m exhausted and need some respite

Irritation

When you say I look so well

But I feel so very ill. Why you can`t tell?

Happy

When I have a better day

To feel maybe this illness will go away

I'm sure there are a few other emotions that can be added to this list. 

Can you? 

A bientot! 

Love and hugs from 

The French Femme 💖 

SO SENSITIVE

Bonjour, 

Recently I was told that I'm too sensitive and I replied by saying "Well, yes I am actually!"  

Being sensitive is part of our illness and included in the many symptoms of M.E.

Sensitive to -

• light (I mostly wear dark glasses when I go out and I spend a lot of my time in a darkened room )
• odours ( I can't tolerate perfume, cigarette smoke and so many other smells)
• noise ( I feel overwhelmed in lots of noise and prefer the peace and quiet)
• food sensitivities (I have become intolerant to gluten and dairy)
• chemical sensitivities ( I have to use all household and beauty products that are perfume free and hypoallergenic)    
• sensitive to medications ( I am intolerant to most medications and have a bad reaction) 
• sensitive to infections and viruses ( I seem to pick up any infections or viruses very easily and it takes a long time for recovery)
• sensitive to extremes of temperature  ( I suffer more in very hot or very cold weather and especially rapid changes in temperature which has brought on a relapse in the past) 
• sensitive to touch ( I find some clothes and  materials hurt or irritate me) 
• hypersensitivity ( Going out can be an overwhelming experience. It feels like all my senses have kicked into overdrive. I can feel bombarded by all the lights, crowd noise, traffic noise and odours)
• sensitive emotionally  (I am easily hurt and burst into tears easily - the technical term is 'labile') 
• sensitive to stress and emotional situations (It makes all my symptoms worse and can even bring on a relapse)   

So I've made some personal choices and decisions, and still do so, in order to protect myself. I have chosen to live alone in a very quiet and calm area. I have ended relationships. I have learnt to say "No!". I am constantly trying to put myself and my needs first. But we all know how hard that can be in a world where so many demands are made on us and so many people misunderstand.         

 Sensitive

Sensitive to

So many things

Around me

Sensitive to

So much noise that

Surrounds me

Sensitive to

Any bright light

Which blinds me

Sensitive to

Many smells that

Confront me

Sensitive to

Food I eat which

Upsets me

Sensitive to

Many drugs that

Should help me 

Sensitive to

Chemicals that

Affect me

Sensitive to

Any stress that

Panics me

Sensitive to

So much and tears

Come quickly

Sensitive to

So many things

Around me

So I want to   

Hibernate and

Protect me! 

So until next time look after yourself and make your life as comfortable and stress free as possible. 

A bientot!  

From the French Femme

xxx

EM/SFC en FRANCE

Bonjour, 

J’ai fait une promesse à écrire un blog en français.  Alors j’espère que ce blog est apprécié par tous mes amis français et tous mes amis anglais en France. 

Je vais commencer par vous parler un peu de moi. Je suis tombée malade en 2002 avec ce qui semblait être la grippe, mais elle n’a jamais disparu. J’ai été diagnostiquée EM/SFC ( Encéphalomyélite Myalgique/Syndrome de fatigue chronique) en 2003 en Angleterre. À ce moment-là, j’ai rencontré un français. Nous nous sommes mariés en France en 2005 et j’ai vécu ici depuis cette période. J'ai décidé de vivre en France pour la qualité de vie que j'y ai trouvée  'locations effect'.  J'ai pensé que c'était mieux pour ma santé. 

Malheureusement cette maladie est peu connue en France. Pourquoi? 

'Comme vous le savez, l’EM/SFC a très peu de visibilité en France comparé au reste du monde. La faute notamment à une représentation quasi-inexistante dans les médias. La recherche avance peu, et peu d’hôpitaux en France ont la capacité de diagnostiquer la maladie. Beaucoup d’entre nous n’ont pas la capacité de se déplacer pour participer à des conférences. Internet est un des rares outils à notre portée pour nous faire entendre' 

En France, je n'ai rencontré qu’un seul médecin qui connaissait un peu cette maladie. Elle est "causée par un virus". 

Souvent il est confondue avec la fibromyalgie, mais les deux maladies ne sont pas les mêmes.  

L'EM/SFC c'est quoi? 

L’EM/SFC – encéphalomyélite myalgique / syndrome de fatigue chronique – est l’une des appellations utilisées pour désigner une maladie sévère qui touche plus de 150 000 personnes en France. Elle affecte des personnes de tout âge et peut survenir brutalement, souvent à la suite d’une infection. 

EM/SFC est une maladie lourde, complexe, acquise et présentant de nombreux symptômes principalement en rapport avec un dysfonctionnement cérébral, gastro-intestinal, des symptômes immunitaire, endocrinien et cardiaque. 
Depuis 1969, l'EM est répertoriée comme une maladie neurologique selon la classification internationale de l'Organisation mondiale de la Santé. 

Causes de la maladie 

Les causes exactes de l'EM/SFC sont inconnues, mais ce syndrome semble déclenché par un grand nombre de facteurs. Les infections virales, une prédisposition génétique, des toxines environnementales et des réactions immunitaires sont autant de causes possibles de ce trouble. Selon toute probabilité, il n'y a pas une cause unique pour l'EM/SFC, mais plutôt un ensemble de facteurs.

Symptômes

Le symptôme caractéristique de l'EM/SFC est une fatigue extrême qui perdure depuis au moins 6 mois. Les personnes atteintes d'EM/SFC sont constamment fatiguées et ont l'impression que leur niveau d'endurance est continuellement faible. On peut notamment mentionner les symptômes courants ci-après :

• une apparition soudaine de fatigue grave, durable et qui diminue grandement les activités du patient; elle peut se combiner à une exténuation, à de l’épuisement, à de la faiblesse, à une sensation de lourdeur et à plus d’efforts au mouvement;
• un sentiment de grande fatigue qui persiste plus de 24 heures après un très petit travail physique ou mental;
• un sommeil non réparateur (sommeil, après lequel les personnes ne se sentent pas reposées);
• une douleur musculaire qui se déplace, parfois sans raison évidente; une douleur à une articulation sans rougeur ni œdème;
• un mal de tête;
• une diminution de la mémoire ou de la concentration;
• un mal de gorge récurrent;
• les ganglions sympathiques fragiles : le plus souvent sur les côtés du cou et sous les bras;
• un étourdissement ou une faiblesse en position debout;
• une sensibilité à la lumière, au bruit et aux odeurs;
• une nouvelle sensibilité aux aliments/aux médicaments/aux produits chimiques;
• des problèmes gastro-intestinaux comme le syndrome du côlon irritable

Critères diagnostic

Il n’existe pas d’analyse de sang ou un autre examen pour poser le diagnostic de l’EM/SFC. 

L’EM/SFC est une maladie dont le diagnostic s’effectue non grâce à un test sanguin ou un examen radiologique mais en se basant sur des observations cliniques et après exclusion d’autres pathologies. 

Cependant il existe de très nombreuses définitions cliniques. 

Le problème de la validité de chacune de ces définitions est que, comme le dit le Dr Komaroff : "Tant que nous n’avons pas de biomarqueur “gold standard” pour la maladie, il n’est pas possible de tester l’exactitude d’aucune définition clinique, ses taux de faux négatifs et de faux positifs. " 

Même s’il n’y a pas de consensus sur la meilleure façon d’établir un diagnostic, de plus en plus de chercheurs s’accordent sur le fait que le 'malaise post-effort'  (Post-exertional Malaise, PEM) est un critère essentiel et caractéristique de l’EM/SFC. 

les deux plus récents sont:

Critères du Consensus Canadien en 2003 

Critères du Consensus International  en 2011

Traitements et stratégies 

Il n'existe pas de traitement efficace pour combattre EM/SFC ayant fait ses preuves. Toutefois, différentes stratégies permettent aux personnes qui en souffrent d'améliorer leur condition et de mieux vivre avec ses conséquences:

• Quelques médicaments peuvent permettre de soulager certains symptômes 
• respect de ses limites énergétiques
• le repos est essentiel 
• planifiez d'avoir des périodes de repos
• prenez un jour a la fois
• apprenez à dire 'non' si vous êtes fatigué    
• techniques de respiration et de relaxation
• éviter tout type de stress et d’ajuster votre vie selon la maladie
• observez vos limites (=pacing)
• organisez des aides pour la vie quotidienne
• saine alimentation
• hygiène du sommeil
• contrôle de facteurs environnementaux aggravants
• informez votre entourage
• Soulagez-vous en consultant  des spécialistes pour maladies chroniques  

Le 12 mai : Journée internationale de reconnaissance pour l’EM/SFC 

L'objectif de cette journée est de sensibiliser les gouvernements, les institutions, les médias et la société en général sur la situation des personnes qui souffrent de l'EM/SFC et de la Fibromyalgie. 

Florence Nightingale a contracté une forme grave du Syndrome de Fatigue Chronique et de Fibromyalgie vers l'age de 35 ans. La date de la Journée Mondiale de l'Encéphalomyélite Myalgique et de la Fibromyalgie a été choisie en l'honneur de cette grande dame, ayant un parcours des plus marquants dans l'histoire en des temps difficiles. 

Dans le cadre de cette journée, j’espère que vous partagerez mon blog et toute information concernant cette maladie.


Au revoir
The French Femme
xxx

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