Wednesday, 11 October 2017

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😪😫




Sunday, 27 August 2017

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.   

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 💖 








Saturday, 3 June 2017

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

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. Ã€ 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 Å“dème;
  • 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