Wednesday, 23 May 2018

AWARENESS RAISING ALL YEAR

Bonjour, 

I want to talk about a few things in my blog today. 

Firstly, Myalgic Encephalomyelitis is an illness that changes all the time - every year, every month, every week, every day and every minute of that day. 

It's unpredictability and variability means it's hard to cope with and difficult for others to understand and accept. 

I never know how I'll feel when I wake up each day. I don't know what symptoms may come along each day. It can all change very quickly. 

This makes it impossible to plan anything with surety and reliability.  

Some days I may feel relatively better, either physically or cognitively, and may be able to do a little more. However I have to pace and manage any activity so as not to bring on post-exertional malaise or a relapse.    

I also have the problem that assumptions are made by others. They think that just because I can do this today I must be ok. They may think that I'm not really ill, especially as I may look well. They may think that I can repeat the same activity. They may think that I'm recovered. 


Just because
I can do this
Today
Doesn`t mean
M.E. has gone
Away

Just because
I look well and
OK
Doesn`t mean
I really feel
That way

Just because
There is nothing 
You see
Doesn`t mean
That I`m fine and
Healthy

Just because
You don`t accept
M.E.
Doesn`t mean
There`s nothing wrong
With me

Just because
You don`t believe
M.E.
Doesn`t mean
You can treat me
Badly

Just because
You don`t understand
M.E.
Doesn`t mean
That you can treat me
Disrespectfully

Just because
You don`t understand
My illness
Doesn`t mean
That you can cause me
Hurt and distress



Also within the parameters of the illness there are different levels of severity and ability.  

There have been attempts to establish scales of disability as a guide BUT I don't think that we can fit into a little box and stay in that box. 

I think it's quite common to move up and down these levels at any time - even within a day. 




Secondly, today is the first anniversary of the death of Merryn Crofts. She is only the second person in the UK, and the youngest, to have M.E. as recorded official cause of death.  

So it's a terribly sad day for all her family and for the M.E. community. 

"Can people die from M.E.?" is a a frequent question. The answer is "yes in some cases". 

That's why it's important to raise awareness of just how life threatening this illness can be.     



  

Thirdly,  May and especially the 12th May is an international day of awareness. I and many others have made a huge effort to raise awareness and understanding this month at some cost to our level of health. I don't think I've ever seen such a huge wave of awareness raising and it makes me feel encouraged and hope that the tide is turning. 

BUT we have to maintain that wave and keep raising awareness and understanding. I don't want to read of more needless and tragic deaths because of this illness. 

SO join me whenever you are able to continue the fight.    


     

A bientot
The French Femme
xxx

Sunday, 6 May 2018

MY STORY FOR M.E. AWARENESS WEEK

Bonjour, 

We all have a story to tell about how we became ill. This is mine.   

It began in 2002 when I started to notice that things weren't quite the same. It felt like I had flu. I had planned to go and visit a new and exciting man that I had met recently on a Poldark Appreciation Holiday. I think that holiday was the last time I can recall feeling well. 
  

Anyway I'd had a couple of weeks off work and still felt unwell but didn't want to cancel my next trip to Cornwall. After all I thought that I had met the love of my life! So I pushed myself to go but struggled all the time. I can recall so clearly a walk where we had to go up a steep hill. Now up till then I had been a keen walker and hiker. Normally it would have been easy. But this time it seemed impossible and it might as well have been Mount Everest. I also recall feeling really cold at that time even though it was the middle of summer. I had no idea what was happening to me. 

After this visit to Cornwall I went back to work and yet I still didn't feel really well. I pushed myself to keep going. I had a house and mortgage to maintain and was a single mother. What else was I to do? 

The pattern repeated going to work and then once again sick leave. At that time I was a full time union representative for Unison and other unions. I loved my work and often went to extra weekend courses or conferences. In that summer of 2002 I went to a conference in Bournemouth. 


I went to see my doctor a few times as I couldn't understand why I always felt so tired and had no energy. She was of no help and said that some of the flu type viruses in the summer could be worse than those in the winter. She even suggested that as soon as possible in the autumn I have the flu jab. I had confidence in my doctor so I did just that. 

Of course you might be wondering what happened to Cornish man! Well although I saw him again a couple of times it didn't work out. I was so disappointed and upset. 

That autumn I continued to push myself at work. I still felt below par and would often take sick leave. After the disappointment in love I also had a crazy phase of going on lots of blind dates in the search of a another man in my life. What was I thinking? 

There were problems at work which only added to my stress and pressure. Somehow I managed to keep going until the end of the year and christmas. 

That was when I finally collapsed. I had never felt so ill in all my life. It was indescribable. I could hardly get out of bed, I wanted to sleep all the time, my whole body ached, I felt so dizzy, my glands were swollen and my throat was so painful. It felt like I was dying.   

At the beginning of 2003 I went to see my doctor again and this time took my mother as support. The doctor seemed at a total loss and said "What do you expect me to do?". I was disgusted. She was the doctor after all. I walked out in tears and frustration. There had to be some reason for how I was feeling. I wasn't making this up. 

So I changed my doctor and he seemed more open and understanding and sent me to the hospital for lots of tests. 

In the meantime my friends and I had for a long time planned a weekend break in The Cotswolds. I didn't want to miss it and let down my friends. So once again I pushed myself when I should have stayed at home and rested. This photo of me was taken at the time. I can see the illness in my face even though I'm trying to smile. This was the last time I wore my hiking boots.    



After my complete collapse I never went back to work. It seemed as if my life was falling apart. I had no idea why I had become so ill. I had no idea what this illness was and had no way of finding out. 

I went to the hospital and did all the blood tests. Of course nothing showed up. Eventually I saw a doctor at the hospital who said that, considering all my symptoms and my history up to that date, I had chronic fatigue syndrome. I felt so relieved that at last I had a diagnosis. However I was told that nothing could be done to help me but they suggested graded exercise and some cognitive therapy. Once again I had confidence in the medical profession and tried some graded exercise. That nearly killed me! Needless to say I stopped that at once. 

Since my diagnosis I've had little real help and support from the medical profession and have learnt myself about this illness myself and how to live with it. 

All the things that I previously enjoyed became too difficult or impossible. 

My hiking boots stay in a box at the back of my cupboard. I don't know if I'll ever be well enough to wear them and go hiking again. They represent my old life and the old me. 

I miss me and that life that used to be mine.   

In it's place I've had to find a new life. I've had to reinvent myself. Perhaps I would never have written poems and published books if I had carried on as before. Perhaps I would never have written a blog. 

Yet I can't but help miss my old life and all the things I loved. This poem doesn't include everything that I miss. That would be a very long poem! 

On the final note about love - I did meet a french man who really was the love of my life. Life of sorts can go on despite illness. 

Anyway that's another story............... 





A bientot
The French Femme
xxx

Saturday, 28 April 2018

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    

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