Sunday, 29 December 2013

HOPE

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 

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   
   



 

  

Sunday, 15 December 2013

TURNING THE NEGATIVE INTO THE POSITIVE

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

It`s hard when faced with a severe and chronic illness to accept that life has to change and to find a new path.  I think I`ve reached that point and know that this illness is not going to go away - unless some miracle cure arrives in my lifetime. So I`ve had to learn to live with it. One of my poems touches on the theme of 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 that we can then move forward BUT how to change the negatives of illness into positives? 



I touch on some of the positives in my poems. However a friend has recently suggested that maybe I should focus more on these positives.  Yet it`s easy to focus on the negatives and forget the positives.

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. Perhaps I have all too easily focused on and written about the negatives.

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  
  • 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 a book of my poetry through Amazon
  • Through this book I am contributing to funds for Invest in ME and towards finding a treatment and a cure for this  dreadful illness     
Do you think you could do the same? 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 would finally like to thank all those people who have helped and supported me in the last year.

I would like to thank all those who have purchased my book.

I hope it makes a difference and helps you, your friends and family to understand this illness.


I am still writing poems, aim to publish another book in 2014 and have other ideas to raise awareness and understanding. 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.

All that remains is to wish you a Merry Christmas and a Happy and Healthier New Year.


I`ll see you back in 2014 with more poems and more thoughts to share with you.

Love and best wishes from the French Femme xxx

Saturday, 7 December 2013

I DON`T WANT TO SLEEP!.

Sometimes I don`t want to sleep.

"Why?" you`ll probably ask.

Those people with M.E.  will know what I mean.

I`m plagued most nights by vivid and strange dreams or nightmares.

As if sleep isn`t difficult enough!

Yes, everyone dreams and has nightmares BUT with M.E. it feels different.

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.    

Combined with all the other sleep issues my sleep is more like a battlefield and far from refreshing.

So what`s going on?

 Dr Myhill says it`s typical of hyperventialtion 
`Vivid dreams or nightmares; tingling and numbness of hands, feet, and area around mouth; yawning or sighing; sensation of needing to take a deep breath; panic attacks; feeling of being spaced out, faint or dizzy, episodes of weakness and exhaustion; muscle spasms, twitching, cramp, aching.`

It also seems that we  have light sleep, skip through the stages of restorative sleep and go straight into dream sleep.  Our endocrine system is dysfunctional and we are lacking in Serotonin.

You can read more here

So no wonder I have all these problems with strange and vivid dreams!

I`ve expressed how I feel in a poem which was kindly illustrated for me by Julia Cottam and `The Big Sleep for ME`


Perhaps you can identify with all this. Perhaps you suffer the same. I`d like to hear from you.

I`ll be back with more about sleep problems and issues but in the meantime
Bon rêves!
From the French femme




Tuesday, 26 November 2013

To sleep or not to sleep!

In the last week I`ve once again been suffering from insomnia and 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)
And it seems that the most common sleep dysfunction in ME 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 ME. 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 ME and I was approached by Julia Cottam to use these poems for The Big Sleep for ME during ME awareness week in May 2013 
https://www.facebook.com/TheBigSleepForMe?fref=ts

She along with M.E. Awareness: Words and Pictures provided the artwork for the poems
https://www.facebook.com/MEAwarenessPics?fref=ts

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

Here are a couple of 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.


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. 

After ten years of this illness I seem to mostly suffer from insomnia, frequent awakenings or weird and lifelike dreams. The last time I had a severe relapse was a couple of years ago and it was as if I had gone back in time and all I wanted to do was sleep.

Next time I`ll share some more of my poems about sleep.
Until then Bonne nuit!
From the French Femme xxx  


 
 
 
 

 
 


Saturday, 16 November 2013

Why write poetry about M.E.?

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. 

It`s a simple but effective method to say directly and succinctly what it`s like to live with ME.

It`s a simple and easy way to help others to understand what it`s like to live with ME.

My poems are a window on a life with ME, 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 ME. 
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 ME. 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 ME, 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 ME 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 ME.

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

 
The book is called `My A-Z of M.E.` (Myalgic Encephalomyelitis) by Ros Lemarchand and is available on Amazon.  
 
 
In paperback from Amazon UK.
http://www.amazon.co.uk/.../dp/1492735116/ref=sr_1_6...
Kindle version on Amazon UK
http://www.amazon.co.uk/.../dp/B00EYXX1NW/ref=sr_1_1...
Kindle version on Amazon.com
http://www.amazon.com/My-M-E-Myalgic-Encephalomyelitis-ebook/dp/B00EYXX1NW/ref=sr_1_1?s=books&ie=UTF8&qid=1383303632&sr=1-1&keywords=My+A-Z+of+M.E.+by+Ros+Lemarchand

 At no extra cost, if people go to Amazon via easyfundraising, a donation will be made to IiME at no extra cost to the buyer, and easyfundraising really is easy to register with (just an email addy and password) and use.
http://www.easyfundraising.org.uk/causes/investinme

A percentage of sales will be going to Invest in ME
http://www.investinme.org/

If you don`t have a kindle you can download the application here http://www.amazon.co.uk/gp/feature.html/ref=kcp_pc_mkt_lnd?docId=1000423913
 
 
I look forward to sharing more about me, ME and my poems in future blogs.
 
Au revoir!
From the French femme
xxx