HOPE

Bonjour, 

Well here we are again at the end of another year and just about to start a new one. Of course traditionally everyone likes to wish you a `Happy New Year` and tries to make New Year resolutions. Everyone hopes that things will get better in the New Year.

My dictionary says that HOPE is expectation and desire (of thing, of doing, that).     

But with a long term and chronic illness, like Myalgic Encephalomyelitis, what hope is there? What can I hope for? What do you hope for?

How can we have the same expectations and desires as `normal and healthy` people? Our lives have been changed by chronic illness. So therefore our hope changes. This is what I said in my poem about hope...

Hope

To have a better day

The pain to go away 

Hope

This fatigue will soon end

And my body can mend 

Hope

To find energy

Then start recovery 

Hope

To improve my pacing

Against all I’m facing 

Hope

I find new ways to cope

Which come within my scope 

Hope

To increase more awareness

So disbelief is less 

Hope

That I can work again

And all’s not lost in vain 

Hope

To better understand

This dreadful M.E. land 

Hope

For a future healthy

And at last M.E. free!

 

  

I feel as if  the best I can hope for is an improvement in the level of my health and to see a step nearer to a cure.. 

I also hope that my poems and what I write helps to increase awareness and understanding of this incredibly difficult illness. 

I think there has to be hope, in order to keep going, not to give in to illness and try to remain positive. I know that`s hard for many and life can seem pointless. Otherwise what sort of life is it? So try to find some hope for the future. Maybe hope has changed but you can still hope.    

Of course many like to celebrate New Year`s Eve.  

Here in France New Year day is popularly called as Jour des Étrennes, and le Jour de I'An. New Year day celebrations are referred as 'Reveillion'. It is considered one of the oldest in France and is an official public holiday.

`People in France go and meet their friends and families, to celebrate the special day with mutual solemnity and ecstasy. A pleasant farewell to the old year and a grand welcome to the New Year is done, with an optimistic hope of success, prosperity, happiness, and peace in the coming time. New Year celebrations begin on New Years' eve and go on till the 6th January of the New Year. In France, New Year's Eve is referred as la Saint-Sylvestre.`

`On New Year's Eve, a traditional ceremony is organized in France, as a part of which, a special festive cake with the name of la galette des rois is cut. A special feast, called as le Réveillon de Saint-Sylvestre is planned, which have traditional dishes such as pancakes and foie gras (flavored duck or goose) on the platter. Also, champagne is served to the visitors. According to French traditions, this special dinner brings in prosperity and good luck to the lives of all those attending the feast.`

I`m not well enough to join in these traditional celebrations.  If I am lucky I may have a glass of something to bring in the New Year. At the same time I will be wondering and hoping that 2014 will be a better one for me and so many of my sick friends. 

Bonne Année! 
From the French Femme
See you in 2014
xxx   
   



 

  

TURNING THE NEGATIVE INTO THE POSITIVE

Bonjour, 

When suffering from a long term chronic and invisible illness it`s hard to be positive and it`s hardly surprising that some may become depressed. 

A depressed person lacks motivation to do anything, but if pushed to get a little exercise, will likely find their mood lifted.  

However, a person with M.E. (Myalgic Encephalomyelitis) doesn't lack motivation to do things, and may even attempt them, then find that they are unable to continue and may become very upset about this. 

It`s hard when faced with a severe and chronic illness like M.E. to accept that life has to change. The longer it continues the more likely you are to reach a point when you realise that this illness is not going to go away. So you have to find some acceptance and a different life. 

This poem of mine tries to express the struggle with acceptance.  

Acceptance

To say “this illness I accept”

Is such a very hard concept

To accept my life has to change

To accept it can’t stay the same

To accept how I must now live

To try not to be negative

To accept my limitations

To lower my expectations

To accept I need to take care

To accept energy is rare

To accept I need to have rest

To pace myself and do what’s best

To accept new ways of coping

To find better understanding

To not be demanding on me

To reject those feelings guilty

To accept help on a bad day

To be honest in what I say

To accept I’ll have some bad days

And to feel denial and rage

To stop fighting against my fate

To stop my anger and my hate

To again find myself grieving

To mourn that life I’m now missing

To accept does not mean defeat

To know this illness I will beat

To accept is not giving in 

But hope one day this fight I’ll win

To accept part goes to M.E.

To know it can’t take the real me!

I wish I could say “I accept”

But it is such a hard concept  

I think that once there is some acceptance we can then move forward BUT how to change the negatives of illness into positives? 

A lot of my poems may appear negative. Yet I'm only trying to express all the feelings and emotions that come along with a chronic illness. I'm trying to represent the reality and not some fairy tale. It's much harder to paint a positive picture. 

I know from the comments and feedback that I have received since publishing my poems that many have found them to evoke emotions and tears. I suppose like myself it`s facing the reality of life with chronic illness and to see it written down in words. I myself become emotional when reading my own poems. 

Personally, I would like to believe that I have turned some of my negatives into positives.

• I have learnt to listen to my body
• I have learnt how to really rest and relax 
• I have learnt to appreciate the small and yet important things in life
• I have met and made some amazing new friends through social media  
• I have learnt how to put myself and my needs first
• I have developed new skills in writing  
• I`ve had time to express my self and my life through poetry
• If I had never become ill I would not have written poems and published a book
• I have been successful in self publishing books of my poetry through Amazon
• Through my books I'm helping to raise better awareness and understanding of M.E. as well as contributing to funds for Invest in ME Research     

You can find all my books on the Author's pages here 

Amazon UK 

Amazon France 

I hope my blog will help you to have a look at you life now. 

Do you think you have reached acceptance? 

Can you see some positives from the negatives? 

I hope so. Though I suspect that not everyone will be able to do that. We are not all the same.

I know it`s an old cliché but we only have one life and even if it`s a life sick we still have to make the most of it.

We have to try to see through and get past the negative into the positive.

Bonne chance 

The French Femme 

xxx

To sleep or not to sleep!

Bonjour,

In the last week I`ve once again been suffering from insomnia or those horrible nightmares and dreams.

I feel like my bed is a battlefield. I can`t recall the last time I had a good night`s sleep!

So what`s going on?

Well sleep dysfunction is a common problem for people with ME which includes

• Insomnia
• Difficulty in initiating sleep
• Frequent awakenings
• Nightmares or agitated dreams
• Non-restorative sleep
• Variations in sleepiness and energy throughout the day
• Sometimes hypersonic (excessive sleeping)

In the early stages of the illness hypersomnia is more the problem, when you need to sleep a lot longer than `normal` yet don`t feel refreshed. This may also happen in a relapse. Some find a reversal of their sleeping pattern and find themselves sleeping more in the day than the night. And then insomnia seems to become the pattern later in the illness. 

 It seems that the most common sleep dysfunction in M.E. is light sleep, where you never hit the deep stages of sleep (Stage 3 & 4) required for restorative sleep. This is because the endocrine system (which produces hormones) is dysfunctional in people with M.E. In a healthy person, the body naturally produces more dopamine and serotonin in the evening, as it gets darker. These two hormones are released in the brain, causing the normal progression of all of the stages of sleep, including deep sleep. Without enough of these hormones, the brain stays in the light stages of sleep.

So no wonder I always feel tired!

I have written a few poems about the problems of sleep in M.E. and I was approached by Julia Cottam to use these poems for The Big Sleep for ME during M.E. awareness week in May 2013 

She along with M.E. Awareness: Words and Pictures provided the artwork for the poems

I think the combination works well and helps to bring the poems alive.

Here are some examples.

This poem entitled Sleep highlights the problems around initiating sleep, frequent awakenings and insomnia.

 



The second poem ME Sleep patterns is about the changes that take place in sleep patterns from hypersomnia to insomnia, sleep reversal and unrefreshing sleep.

The third poem Nightmares and dreams is about the vivid and strange dreams that I and many others with M.E. suffer from. 

Sometimes I have one dream that goes on all night. I can wake up, go back to sleep and continue the same dream. It seems impossible to escape the dream. It`s like I`m living a different life in a parallel universe (I watch too much Star Trek!).

Sometimes I have one dream, wake up, go back to sleep and then have a different dream. It feels that my sleep is a never ending succession of short stories  - all as real and vivid as the next one.

Sometimes I can`t tell the difference from my dream and reality.

Sometimes the dreams turn into nightmares and I`m scared to go back to sleep.

These dreams and nightmares are exhausting.    

Here's another poem about Dreams

Sometimes we can become Paralysed in our sleep 

It's certain that we spend a lot of time in bed! 

With that I think I'll go to bed and hope not to dream! 

Bonne nuit 
From the French Femme xxx  

 

 

 

 



 

 



Why write poetry about M.E.?

Bonjour, 

I know poetry is not everyone`s cup of tea but I have found it to be a good way to express how I and others feel about living with this dreadful illness. I hope that I am a voice for others who find it difficult to express how they feel. 

I believe that it`s a simple but effective method to say directly and succinctly what it`s like to live with M.E. and that it`s a simple and easy way to help others to understand this illness. 

My poems are a window on a life with M.E., how it affects and changes lives, the suffering with so many symptoms, the lack of understanding, the emotions and experiences that so many have in common.

Many people find it difficult to explain what it`s like to live with M.E. 
Usually it`s only others who suffer the same who can understand and empathise.
Through my poems I want to increase the level of understanding and to help others to feel less alone with this illness. 

I have been writing poems for many years and it`s only more recently that I  have started to focus more on M.E. Writing poems has helped me to cope with this very difficult illness. I have found it has helped me to write it down and put into words how I feel. At times it has been a painful and emotional process - especially when I`ve read back the poems to myself. I guess seeing it in black and white hits home and the reality of my life since becoming ill.

Maybe you will have the same reaction when you read my poems. Maybe you will have gone through the same experiences, felt the same emotions and faced the same problems. Maybe you will feel a sense of relief, that you are not going crazy and above all that they are not alone. If that is the case then all my efforts will have been worth while. 

If you have been diagnosed with M.E., or even another invisible illness, I hope you will be able to identify with my poems. I want you to know that you are not alone.

If you don`t have M.E. I hope that my poems help you to understand this difficult and complex illness.

I hope that it will help you to gain some small insight to what it`s like to live with M.E.

This is the first poem I wrote about ME and formed the basis of my book of poems about M.E.

 

The book is called `My A-Z of M.E.` (Myalgic Encephalomyelitis) written by me, Ros Lemarchand. It's available on Amazon in many countries throughout the world in paperback and kindle editions. 

Here is the link to my Author's Page on Amazon UK 

A percentage of sales always go to Invest in M.E. Research. 

This book was the first of many to follow....

 

Au revoir!

From the French femme

xxx