Tuesday, 17 April 2018

COPING WITH CHANGE

Bonjour, 

Coping with change is not very easy for me and I think that's the case with anyone with M.E. or other chronic illness. 

I cope as long as my days and my life stays much the same. 

However change is part of life and can not be always avoided. Some change may be a decision we make. Some change is for the better and may be pleasant. Some changes can be for the worse and may bring on a relapse. 

One change I chose to make recently was to adopt a cat. She's called Florence and is absolutely delightful but does require a bit more effort on my part to look after her and watch all that she gets up to every day! 


There are some benefits of having pets when you live with a chronic illness - unconditional love, having a structure in your life, having to look after something else, helps reduce your blood pressure and helps with loneliness. However there is a responsibility and it may be expensive and you will most likely need help in looking after your pet. I certainly feel that Florence is making a change that's helping me through. 

I'd love to hear about your pets and what difference they've made to your life.   

One change that can bring on a relapse is a sudden climatic change. I have difficulty in adjusting to temperature changes and the seasons, especially if sudden and dramatic. You can read more about the problems I have experienced and the loss of thermostatic stability in my previous blog HOT AND COLD . 

Where I live in France a sudden increase in temperatures is expected this week. It feels like we are going straight from Winter into Summer. I'm already having difficulty in adjusting.  

I have written a poem about such a change 



Out of season

Daffodils have hardly faded away,
When a hot summer sun invades the day.
The tulips stand bold and bright in full bloom
When high temperature arrives too soon.
Blossom buds are only just unfurling
When the sun’s powerful rays start burning.
Spring flowers wilt and die with the heat
Their life short, curtailed, the loss of all sweet.
Fruit and vegetables grow in advance
The seasons seem to be out of balance.
Lambs are barely able to stand or walk
When it’s summer and not spring we now talk.
Yet a cuckoo has just started to sing
A sure sign that we have arrived in spring!
The deck chairs are still stacked in garden store
So we quickly retrieve to use once more.
Winter jumpers now far too hot to wear
We discard for tee shirts and the arm bare.
Last year’s sandals are worn out and faded
No time to buy some new or upgraded.
The Easter eggs have yet to be savoured
Now cold drinks or ice creams are favoured.
Spring has passed by and barely shown its face
Instead usurped by summer in the place!


So excuse me while I go and check on Florence and find a t-shirt and flip flops!! 

A bientot 
The French Femme xxx

Friday, 6 April 2018

THE UNDISCOVERED COUNTRY

Bonjour, 

I think we all know the famous line from Hamlet "to be, or not to be, that is the question" and " an undiscovered country whose bourne no travelers return - puzzles the will".  It seems that hamlet is contemplating death and death is the undiscovered country. What lies after death is mysterious, unknown and yet to be discovered. We do not know what lies after death and that is why death is an 'undiscovered country'. People who die don't usually come back to tell us about it - do they?  

'The Undiscovered Country' is also the title of the sixth feature film based on Star Trek. In this case the collapse of the Klingon Empire is imminent and the United Federation of Planets decides that this is an opportunity to finally negotiate a true, lasting peace with the Klingons. The Klingons are invited to dinner aboard the Starship Enterprise. This is a first and everyone is very tense and concerned about the unknown. Change and the unknown can be frightening. Gorkon gives a toast "to the undiscovered country" - the future - and of course Spock refers to the scene in Hamlet.  

You might be wondering what all this has to do with becoming ill with a chronic illness like M.E. 

So let me explain. We do not know what lies on the other side of good health. When we become ill we enter the unknown. We do not know what lies ahead. We travel into a country of chronic illness where nothing is the same. The unknown is frightening. We don't know how to deal with it. We don't know how to cope. We have to adjust and make changes. We have to learn about our illness. We become self experts. We have no choice as most doctors know little or nothing about this illness.    

We enter the undiscovered country of pain, extreme fatigue, confusion, brain fog, isolation and uncertainty. We feel that our life has ended, slipping away and feel dead but still alive. It's no longer life as we knew it. We just survive. 

Before I became ill in 2002/3 I knew nothing about M.E. 

I had been a well, healthy and active person. Overnight it all changed and I entered that undiscovered country. I was scared. I thought my life was over. I felt so ill I thought that I was going to die. But I didn't. I had to adjust and change everything in my life. I had to learn as much as I could about what was wrong with me - not easy then without a computer and the internet.   

Since then I've found out that my chances of recovery are almost zero and sometimes I feel as if death would indeed be preferable. Sadly it's a fact that there is a high suicide rate in M.E. 

Since then I've discovered that there is little help, treatment or support. I've found much ignorance, lack of understanding and respect, much neglect, cruelty and prejudice. 

I never asked to enter the undiscovered country but I'm here and there's no going back. So I have to continue to learn how to live in this country. 

How do you?       





The Undiscovered Country

I’ve travelled to the
Undiscovered country
Where nothing is the same
So my life has to change
A country that’s unknown
And where I feel alone
A country of no return
Where I have so much to learn
A country of chronic illness
Where I suffer pain and distress
A country of so much neglect,
Cruelty and lack of respect
A country of poor recovery
Little hope and much uncertainty   
A country beset with confusion
And many left in isolation
A country where I feel dead but alive
No longer living yet somehow survive



A bientot 
From the French Femme xxx

Wednesday, 7 March 2018

MY BRAIN IS MISSING

Bonjour, 

This blog is about the commonly used phrase BRAIN FOG that sums up feelings of confusion, forgetfulness, lack of focus and mental clarity. 

It reminds me of one of the worst episodes of Star Trek called 'Spock's Brain' where Spock has his brain stolen by an alien female.  To me brain fog feels like my brain is missing. My mind feels slow and unresponsive, like I'm wading through treacle, like I'm stumbling in the dark, like I'm lost in a fog and can't find my way out. It feels like the worst hangover without the benefits of having a drink! My memory is hardly better than a goldfish. Did someone put cotton wool in my head? Where's my brain gone?!!! 

So despite my cognitive difficulties I'm going to explore brain fog, how do we describe it, what are the main problems, how to prove brain fog, comparing then and now, what causes brain fog and what if anything helps brain fog?    




Brain fog is a common symptom of M.E. although not unique to M.E. 

"One of the most troublesome symptoms in people with ME/CFS is “brain fog,” which manifests as impaired working memory and concentration accompanied by difficulty processing complex information".

How do we describe Brain fog? There are many cognitive problems  that are part of M.E. and may include the following 


  • Difficulty with simple calculations (e.g., balancing checkbook)
  • Word-finding difficulty
  • Saying the wrong word
  • Difficulty expressing ideas in words
  • Difficulty moving your mouth to speak
  • Slowed speech
  • Stuttering; stammering
  • Impaired ability to concentrate
  • Easily distracted during a task
  • Difficulty paying attention
  • Difficulty following a conversation when background noise is present
  • Losing your train of thought in the middle of a sentence
  • Difficulty putting tasks or things in proper sequence
  • Losing track in the middle of a task (remembering what to do next)
  • Difficulty with short-term memory
  • Difficulty with long-term memory
  • Forgetting how to do routine things
  • Difficulty understanding what you read
  • Switching left and right
  • Transposition (reversal) of numbers, words and/or letters when you speak
  • Transposition (reversal) of numbers, words and/or letters when you write
  • Difficulty remembering names of objects
  • Difficulty remembering names of people
  • Difficulty recognizing faces
  • Poor judgment
  • Difficulty making decision
  • Difficulty following simple written instructions
  • Difficulty following complicated written instructions
  • Difficulty following simple oral (spoken) instructions
  • Difficulty following complicated oral (spoken) instructions
  • Difficulty integrating information (putting ideas together to form a complete picture or concept)
  • Difficulty following directions while driving
  • Becoming lost in familiar locations when driving
  • Feeling too disoriented to drive
I'm sure you can add to this list! 

The problem for me and others with M.E. is how to prove that we really suffer from Brain fog. 

I know that my cognitive and mental ability is severely impaired since becoming ill with M.E. in 2003. If I compare my ability now to that of my former self and life there is a big difference.  

Here are some examples where I am able to notice the difference -  
  • reading books was once a pleasure and I could read through a book in a matter of days whereas now it can take me months to read a book and there are days when I can't read at all  
  • reading, analysing and understanding articles or letters was something that I excelled at but now it can be extremely hard or impossible  
  • writing or typing a letter or something like this blog could be done easily and quickly but now it will take days or even weeks
  • I used to love interaction with other people and have a good conversation but now that's very limited or not possible at all. My days are spent mostly alone. 
  • In my early years I was very academic, I was in the top stream at school, passed ten 'O' levels and 2 'A' levels. I was trained as a teacher and have a Bachelor of Education degree. I had excellent communication and organisational skills, I was a teacher, later I became a supervisor of a team of people in Finance, I was capable of making decisions, I helped others giving advice on official documents and procedures, I was an educator and so much more. Now all the skills required for my former self feel lost and gone forever. I find it very hard just to organise my own life on a daily basis and often get confused and forget the simplest of things.    
  • I used to travel and visit many places before becoming ill but now I rarely leave my home as I easily become lost and disorientated and I suffer from sensory overload which can lead to panic and anxiety attacks
  • other signs of brain fog in my life now include forgetting what I've just done; forgetting names of people and objects; going into a room and then having no idea what I'm doing there; forgetting where I've stored something; forgetting how to operate something; writing or typing words in the wrong order or unable to spell the simplest of words; forgetting what I'm talking about; unable to concentrate; unable to follow and understand something I'm watching or listening to and so on!!          

  So what causes Brain fog? 

In 2015 scientists at Columbia University's Mailman School of Public Health identified a unique pattern of immune molecules in the cerebrospinal fluid of people with myalgic encephalomyelitis/chronic fatigues syndrome (ME/CFS) that provides insights into the basics for cognitive dysfunction - frequently described by patients as "brain fog" 

“We now know that the same changes to the immune system that we recently reported in the blood of people with ME/CFS with long-standing disease are also present in the central nervous system,” says Dr. Hornig, professor of Epidemiology and director of translational research at the Center for Infection and Immunity at the Mailman School. “These immune differences may contribute to symptoms in both the peripheral parts of the body and the brain, from muscle weakness to brain fog.”


A recent blog cites a few studies and suggests that the causes of Brain Fog may be as follows
  • sleep that isn't restful or restorative
  • abnormal blood flow to some areas of the brain
  • abnormal connectivity patterns between different regions of the brain
  • abnormal function of certain brain chemicals (neurotransmitters)
  • premature aging of the brain
  • mental distraction due to pain
  • overexertion in M.E./CFS as a consequence of post-exertional malaise 
The next question is what helps Brain fog? 

Here are some suggestions
  • for some brain fog improves with effective treatment for pain and sleep problems
  • some supplements may help with brain fog  
  • dietary changes may also help like fish (omega 3), canola or walnut oil (omega 3), eggs (choline), fruit and vegetables, a gluten free diet 



Brain Fog

My head feels light
Doesn't seem right 
Can`t think at all
Hard to recall
Lost words I seek
When want to speak
Then say wrong words
That sound absurd
Confuse a name
Brain fog to blame
Often forget
Then get upset
It`s hard to spell
Or write so well
Make notes to aid
For actions made
Weird sensation
Much frustration
Feels so scary
Makes me wary
Memory lost
But at what cost?
I feel so blank
M.E. to thank! 




Of course in the episode of Star Trek Spock's brain is found and restored. I don't know if that will ever happen to me. I've learnt to adjust and accept my limitations but it can be frustrating and scary.  

This blog has taken me the best part of a week. I hope it helps others. 

I would love to hear about your experiences. What does brain fog feel like to you? How has it caused you problems and difficulties? And what if anything has helped you to overcome it. 

A bientot 
from the French Femme 
xxx  

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