WHAT ARE YOU DOING IN MAY?

Bonjour, 

It will soon be M.E. awareness month and May 12th is International Awareness Day and this year it marks the 26th anniversary since the late patient and staunch advocate, Thomas (Tom) Hennessey Jr, designated May 12th as the international awareness day.   

Tom designated May 12 as the special day to commemorate the birth date of Florence Nightingale and her struggle with chronic illness. 

Each year May 12 is a growing global day of protests and demonstrations by people with M.E., their carers, family and friends. 

I know it's very hard, if not impossible, for those of us who are ill to be able to contribute but every little helps. 

This excellent blog gives plenty of ideas on how we can all help. 

During May I will be sharing and reposting some of my blogs and my poems. 

In the week leading up to May 12 I will be donating ALL PROCEEDS FROM THE SALES OF MY BOOKS TO INVEST IN ME RESEARCH.  

My books are in paperback and kindle versions and are available on Amazon in most countries. 

Here are the links for Amazon UK 

My A-Z of M.E. 

So many symptoms 

Life, love, loss and whole lot more 

Life, love, loss and a little more

I hope you will find some way of taking part in raising awareness and understanding during May. 

We need the suffering to end. 

We need more funding. 

We need more research and studies. 

We need better care. 

We need better understanding. 

We need to end the neglect and isolation. 

We need to be believed. 

We need more people to fight for us. 

We need to increase awareness. 

We all need to come together until a cure is found.   

SO PLEASE JOIN ME AND LET'S MAKE A DIFFERENCE. 

A bientot from 
The French Femme 
xxx    

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

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

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. 

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
• 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 

Here is another useful link with advice on treating cognitive problems 

Brain Fog

 

My head feels light

it doesn’t seem right 

I can`t think at all

 it’s hard to recall

lost words I seek

when I want to speak

 I say wrong words

that sound absurd

I confuse a name

brain fog is to blame

I often forget

then get upset

It`s hard to spell

or write so well

I make notes to aid

for actions to be  made

it’s a weird sensation

causing much frustration

it feels so scary

makes me wary

some memory is lost

 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  

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 wrote " Depression 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

 

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.

     

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