Sunday, 28 January 2018

I'M NOT DEPRESSED

Bonjour, 

This time of year can be depressing for many of those living in the northern hemisphere of the world. But suffering from real depression is something different and needs to be treated. I only once had post-natal depression after the birth of my daughter and have suffered no depression since then.

However, after becoming ill with M.E. I've lost track of how many times I've been asked if I'm depressed! I get fed up and down because of this chronic illness that is hard to support and feels never ending and without hope for a cure. It makes me cry sometimes. But it's no more than that!! 
  
As this picture aptly says M.E. would make a Klingon cry. 



 
So what is depression?  

According to the DSM-5, a manual doctors use to diagnose mental disorders,
you have depression when you have five or more of these symptoms for at least 2 weeks:
  • A depressed mood during most of the day, especially in the morning
  • You feel tired or have a lack of energy almost every day.
  • You feel worthless or guilty almost every day.
  • You have a hard time focusing, remembering details, and making decisions.
  • You can’t sleep or you sleep too much almost every day.
  • You have almost no interest or pleasure in many activities nearly every day.
  • You think often about death or suicide (not just a fear of death).
  • You feel restless or slowed down.
  • You’ve lost or gained weight.
When you look at these symptoms you can see that some of them are in common with M.E. 

So it's hardly surprising that depression is confused with M.E. 

M.E. is not the same as depression. They have different symptoms. Exercise can help people with depression but for someone with M.E. this causes post-exertional malaise. 

But if you do suffer from depression alongside M.E. then you should get help and treatment. There may be secondary or reactive depression as with any other debilitating chronic illness.

Recently the M.E. community lost another warrior to suicide. In her last farewell Anne Örtegren wroteDepression is not the cause of my choice. Though I have been suffering massively for many years, I am not depressed. I still have all my will and my motivation. I still laugh and see the funny side of things, I still enjoy doing whatever small activities I can manage. I am still hugely interested in the world around me – my loved ones and all that goes on in their lives, the society, the world (what is happening in human rights issues? how can we solve the climate change crisis?) During these 16 years, I have never felt any lack of motivation."  

Anne chose to end what to her had become a torturous life. 

In such cases death becomes more appealing in order to end the suffering. 


Depressed

Dead but I`m still living
Empty of all meaning
Pointless just existing
Reason is now fading
Endless days of drifting
Sad my past life grieving
Sad and feel like crying
End my life I`m thinking
Death is more appealing





I'm sorry if this blog is adding to your depression. 

I'll try to end with some suggestions to help combat depression
  • speak to family and friends
  • ask for help when you need it 
  • share how you feel on social web sites 
  • write a blog
  • write a journal
  • look after yourself 
  • get enough sleep and rest when able
  • try to eat as healthily as possible
  • it's ok to get angry or have a good cry sometimes
  • try to find moments of happiness 
  • find something that makes you smile or even laugh
  • perhaps you can find a new interest or hobby 
  • for some praying or meditating can help
Perhaps you have other ideas and ways of coping. 

Above all if you develop severe depression seek help from a professional either a doctor or a counsellor and don't feel ashamed or guilty in doing so. It's incredibly hard to live with a lifelong chronic illness. 

A bientot 
From the French Femme 
xxx

 

Friday, 12 January 2018

HOW IT ALL STARTED

Bonjour, 

Let me start my first blog of 2018 in wishing you Bonne Année and Bonne Santé.    

It's at this time of year that I'm reminded of when I became seriously ill in 2003. I had no idea what was happening to me and was very worried. I had started to realise that something was not quite right when in 2002 I had what seemed like bouts of flu. I would take time off work and rested. Then I would start to feel a little better and would try to go back to work. This pattern repeated several times throughout the year. I'd never had flu before in my life and couldn't understand why I suddenly had the flu that Summer. My doctor was not much help and suggested that I have the flu jab in September. I think that only made me worse. So by the end of the year I completely collapsed and was unable to go back to work in the January of 2003. In fact I never went back and remained severely ill. I despaired of my doctor who was clueless and so changed my doctor. I was eventually sent for lots of tests and of course nothing showed up. However with my history and symptoms I was told that I had Chronic Fatigue Syndrome ( I was also told that the name had recently changed from Myalgic Encephalomyelitis). It was not the flu!!! 

The cause of M.E./CFS is not clear and there are many theories. Although the dominant theory seems to be that it's caused by a virus.

Some people seem to become ill suddenly overnight and can in fact recall the very date when that happened. They may even celebrate their 'sickaversary' - a term coined to celebrate one's anniversary of becoming sick.  

Others like myself seem to become gradually ill over a period of time. I cannot forget the years 2002 and 2003 when slowly everything changed. The activities and the life I loved bit by bit disappeared. In place I became a sick person with a multitude of symptoms. 

I'm still that person today. 

However I won't be celebrating. The champagne is on ice until the day when the definite cause of this dreadful, life destroying illness is discovered and a cure is found. 

I hope it's in my lifetime. 

A bientot 
from the French Femme
xxx


How it started

It started
like the flu
that never
went away.
I wanted
 to sleep not
just at night
but by day.

Yet I still
felt tired
despite of
all that sleep.
Energy
was all gone
and I felt
very weak.

My throat was
very sore
and my glands
seemed to swell.
There was pain
in my legs
and I felt
so unwell. 

A fog came
in my head.
Everything
spun around.
It became
hard to think
and words could
not be found.

Yet since then
I’ve suffered
more symptoms
that are new.
I think that
it was more
than the worst
case of flu!

It started
like the flu
that never
 went away.
I still have
most symptoms
and suffer
to this day.



     

Thursday, 7 December 2017

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

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





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 💖