Tuesday, 9 May 2017

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

Monday, 1 May 2017

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

Thursday, 13 April 2017

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

Tuesday, 7 March 2017

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 

Thursday, 9 February 2017

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

Sunday, 8 January 2017

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

Friday, 16 December 2016

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