Sunday, 14 December 2014

IT'S GOING TO BE A LONELY CHRISTMAS

Bonjour

Sadly it's going to be a lonely Christmas for me and many other people, especially those with a chronic illness like M.E.

For me it will be the first Christmas on my own BUT it will be less stressful,  easier to manage, quieter and peaceful. I can do as I please and if I want stay in my pyjamas all day!   

Recently  I've made a decision to change my life, to put myself and my health first. It's not been easy and it's hard adjusting to being on my own. Yet it has already opened new doors and inspired me to do different things. One of these is to write my first poem in French after my preferred French singer, Johnny Hallyday, and his latest release Seul

So my poem sums up my situation right now and how I feel 

SEULE 
 
Seule
En tristesse
J’ai pleuré 

Seule
La musique
J’ai écouté  

Seule
Paix et calme
J’ai trouvé 
 
Seule
C’est mieux
Pour ma santé  

Seule
Enfin J’ai
Ma liberté

For those who don't understand the French here's a translation

ALONE

Alone
In sadness
I have cried

Alone
The music
I have listened

Alone
Peace and calm
I have found

Alone
Is better
For my health

Alone
At last I have
My freedom
 
 
Despite all that has happened to me in recent months I don't feel truly alone. This is because I have been overwhelmed by the kindness of so many friends and I have found new friends. My poem expresses how I feel about the kindness I have found.  
 
Kindness
The kindness of others
Who all suffer the same
Provides me with support
And helps to keep me sane! 
When I read your kind words
Tears well up in my eyes
Emotion overwhelms
Taking me by surprise 
Such a little kindness
I find goes a long way
And makes a difference
To a difficult day 
A few kind words and thoughts
I sure appreciate
And I thank you so much
My friends are truly great.
 
So I want to finish this year by thanking all my wonderful friends who have helped and supported me and have never given up on me. I couldn't have done it without you.
All that remains is to say that I feel like this is another chapter in my life and the chance to start over. I wish you all a Merry Christmas and a Happy New Year. 
   I have plenty of resolutions for the new year of 2015. I hope you do too.
Joyeuses fêtes et Bonne Année
A bientot en 2015
from the French Femme xxx
 
 

Tuesday, 25 November 2014

LOST


Bonjour

My blogs are a bit like buses. You wait for ages for one to come along and then they all seem to come at once!

This is a special blog to coincide with International Day for the Elimination of Violence against Women on 25th November and 16 days of activism.



As someone who has suffered domestic violence and also suffers from chronic illness I want to help raise awareness. I prefer the term domestic abuse because it's not just physical. The psychological and emotional abuse is just as bad and some, like myself, may say it's even worse.

I was pleased to learn that Home Secretary Theresa May is expected to announce new powers which will put psychological abuse on a par with physical violence

 This is a promising step forward in the recognition of the damage that this sort of domestic abuse can cause.

Domestic violence and abuse can affect men as well as women but the facts and figures show that women are more at risk. 

If the person is also disabled the abuse may be even worse. 

  • Disabled women are twice more likely to experience domestic violence than non-disabled women (BCS 1995)
  • Disabled women are also likely to experience abuse over a longer period of time and to suffer more severe injuries as a result of the violence (BCS 1995)

  • As a disabled woman I feel that I have experienced abuse longer than if I was well and healthy. It's harder to escape and start over again.

     
     
    I have written and dedicated a poem to all those who suffer and have suffered like myself. This poem could apply to someone who has a chronic illness like M.E. or who is a victim of domestic abuse or  even both

      
    Lost 

    I’ve lost my way
    And what was me
    You’ve taken my
    Identity
    You’ve drained all of
    My energy
    You’ve consumed my
    Vitality
    You've hurt and caused
    Me injury
    You’ve denied me
    My liberty
    You’ve left me in
    This poverty
    Isolated
    And so lonely
    Away from friends
    And family
    You’ve cheated and
    Then lied to me
    You’ve taken all
    Control of me
    You’ve poisoned me
    Toxically
    You’ve sucked the life
    All out of me
    There’s left only
    A shell of me
     
    If you are a victim of domestic abuse get help today, talk to someone, learn more and above all don't suffer in silence.
    I know it's far from easy. But if I can do it so can you!     
    I have lost a lot BUT I'm starting to fight back and to find myself again. My next blog will be about what I've found..... 
    A bientot
    From the French Femme xxx

    Saturday, 22 November 2014

    STOP MESSING WITH ME!

    Bonjour! Comment ca va?

    Yes the French Femme is back and fighting. 
    I've been absent for a few months while dealing with a few personal problems.
    I reached a low point where I wanted to end it all. But somehow I found the strength to carry on. I was helped and supported by some wonderful friends.
    So I want to start this blog by thanking those who have stood by me and never gave up on me. 

    Well I've got that off my chest and now for the rest of my blog. 

    In the last week I read and was very moved by another blog    

    I was not alone. 

    It has inspired me to write a poem and I've used some of the key words from this blog.

    This illness messes up our lives completely and in so many ways .... 



    Stop messing with me! 

    You’re messing with me
    Just fooling around
    To make me believe
    That I’m M.E. free 

    You’re messing with me
    Blowing hot or cold
    Forever changing
    Unpredictably 

    You’re messing with me
    Give me a good day
    Then you take it back
    So very quickly 

    You’re messing with me
    Letting me push through
    Until I collapse
    And crash severely 

    You’re messing with me
    In my head and mind
    Just when all seems clear
    A fog surrounds me 

    Stop messing with me
    Don’t give me false hope
    Don’t make me feel worse
    Just make me healthy!
     

     
       
    It's the unpredictable nature that messes us about and makes it hard to manage. That also makes it difficult for others to understand.
    I myself have had periods when I've been so well that I've been able to do some decorating but then so ill that I could hardly leave my bed. 
    So how can we fight this unpredictability? 
    Pacing and rest are the two strategies that seem to work the best in managing M.E. and so to avoid post-exertional malaise or a relapse
    Even so it's very hard to predict each and every day.
    We can still get caught out and tricked into thinking that we are on the path to recovery or feel that we are getting worse.
    I just want to get better and I'm sure you feel the same.
    I want to stop M.E. messing with me!

    A bientot
    From the French Femme
    xxx


       


    Sunday, 3 August 2014

    BEYOND HELP?

    8th August is SEVERE ME AWARENESS DAY



    In recent days I have been reading more about this special day and found a good blog like this one 

    Posters and pictures on Pinterest 

    Wonderful initiatives like Black dress Selfies  

    and a campaign Stop the ME cover up

    Whilst I don't have severe M.E. it has set me thinking. I guess I'm mostly on a moderate disability level and that's bad enough! So I can only imagine how it feels if you are at the severe end of this dreadful illness.   

    Some time ago I wrote a poem entitled 'Alive but not living' and so to mark this special day I have written a new version to try and capture how it must feel to have severe M.E. and how they are seen as beyond help....

       

    Beyond Help 
    Alive but not living
    Feel dead yet still breathing
    In the dark I’m lying
    And silently crying
    I try to keep hoping
    But nothing is helping
    Doctors should be caring
    But they’ve stopped visiting
    With poor understanding
    'Beyond help' they’re thinking
    So nothing is changing
    I’m left slowly dying
    My days never ending
    This prison enclosing
    Abandoned, despairing
    Isolated, waiting
    Until my life is ending

     
    So what are you going to do to raise awareness about Severe ME?
    This neglect has to  end. It's unacceptable that people should be abandoned and labelled as beyond help. Please join me and share as much information as possible in the days leading up to and including the 8th August.
    Thank you
    A bientot from the French Femme xxx  

    Wednesday, 2 July 2014

    ALL CHANGE!

    Bonjour! Sorry I haven't been around for a while but my personal life has gone through some radical changes. I have moved house, moved department and moved from a house to a caravan. Of course we all know that moving is one of the most stressful things you can do in life and with a chronic illness like M.E. it's even harder. BUT sometimes we have to go through difficult changes to get to a better life the other side.  

    I've always dreamed of living near the sea. Now that dream is nearer to a reality and the sea is only a short drive away. I think that despite illness we still have to keep our hopes and dreams alive. We still need goals and something to aim for. We have to live the best we can. 

    So I decided to push myself beyond my limits, risk a serious relapse and make changes. Of course I have been suffering with post-exertional malaise as well as lots of aches and pains but the benefits are already beginning to make it all worth while.

    Here's a photo of me at the sea front when I first arrived a month ago.

     
     
    The sea air is so refreshing and immediately I felt better. 
    I believe it's called the locations effect.
     
    I know we are not all able to change our circumstances but I think even small changes can help and give us a boost.
     
    Anyway this is just a short blog to let you know a little bit about what has happened to me recently and that I haven't completely gone away!
     
    I'm slowly getting back to writing my poems and will be sharing them with you once again.
     
    A bientot
    From the French Femme xxx

    Wednesday, 30 April 2014

    M.E. GROUNDHOG DAY

    This is the second in a series of blogs dedicated to those who have helped and supported me. They are an inspiration to me in all they do in the cause of raising awareness and understanding of M.E.  (Myalgic Encephalomyelitis). 

    Last year, for the first time, I became involved in The Big Sleep for ME and some of my poems were cleverly illustrated by Julia Cottam and by M.E. Awareness: Words and Pictures 

    The Big Sleep for ME is a fundraising and awareness event helping Invest in ME find a cure for ME (Myalgic Encephalomyelitis). It includes a mass 'Sleepathon' during ME Awareness Week (11-17 May)
     
    Julia asked me if I could contribute poems for each day of the 'Sleepathon'. They proved to be a huge success. It made my poems come alive.

    Following the fantastic response I received to my poems I felt confident to write more poems and before the end of the year I published a book via Amazon 

    Julia has written a lovely blog about me, my poetry and my book Dreams can come true.

    One of the poems from last years 'Sleepathon' was called 'M.E. Groundhog Day' after the film of that name.
     
    It was also written to coincide with the International M.E./CFS & FM Awareness Day on 12th May.  
        


    The idea originated with Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases). Mr. Hennessy was based in the US but understood that it needed to be an International event. He designated May 12 as the International Awareness Day for the spectrum of illnesses he called Chronic Immunological and Neurological Diseases (CIND).
    May 12 was chosen as it coincided with the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale became chronically ill in her mid-thirties with a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)-like illness. She was often bedridden for the last 50 years of her life. Despite suffering from a debilitating illness, she managed to found the world’s first School of Nursing.
    Mr. Hennessy included ME/CFS (also known as Chronic Fatigue and Immune Dysfunction Syndrome -- CFIDS), Fibromyalgia, Multiple Chemical Sensitivity and Gulf War Syndrome under the CIND umbrella. These illnesses, characterized by cognitive problems, chronic muscle and joint pain, extremely poor stamina, and numerous other symptoms, afflict people around the world in alarming numbers. 
    GroundhogDay is a 1993 American comedy film where Murray plays Phil Connors, an egocentric Pittsburgh TV weatherman who, during a hated assignment covering the annual Groundhog Day event in Punxsutawney, finds himself repeating the same day over and over again. After indulging in hedonism and numerous suicide attempts, he begins to re-examine his life and priorities.
    M.E. is much like that where the same day is repeated over and over again and like the film we are forced to re-examine our lives and priorities because of this illness.  
    It's twelve years since I first became ill and recently I have been doing a review of my illness and my life. I've decided I need to change, put me and my health first. I have to say "No!" more often and not be bullied into doing things that are beyond my ability. I have to stop pushing myself and making my health worse. 
    Maybe on 12th May it's a good opportunity for you too to reflect on your life and your priorities. 
    Now we are approaching the 'Sleepathon' for 2014 and once again Julia has asked me to contribute
    So during M.E. Awareness week 11 - 17th May more of my poems will be appearing, thanks kindly to Julia Cottam and The Big Sleep for ME team. 
    Not to be missed so keep an eye out! 
    A bientot 
    From the French Femme xxx         

    Wednesday, 16 April 2014

    I NEED A HOLIDAY FROM M.E.

    I want to dedicate a series of blogs to those who have helped and supported me. They are an inspiration to me in all they do in the cause of raising awareness and understanding of M.E.  (Myalgic Encephalomyelitis)

    The first is Jo Best who kindly wrote the introduction to my book
    'My A-Z of M.E.' and who does so much despite suffering herself with M.E.

    She is very active on face book and in raising funds for the charity Invest in ME.

    Recently she posted something which has inspired me to write a poem.

    M.E. is usually a long term or even lifelong chronic illness. It's relentless and there is rarely a good day. We forget what it's like to feel 'normal'. There are so many symptoms and each day feels like a battle. We would do anything to have a break or escape from this life which has been imposed on us. We need a holiday from our life with M.E. 

    So this is  dedicated to her


    Holiday 

    I need a holiday
    To walk away from me
    To become someone else
    And to live normally
     

    I want a holiday
    A break from all the pain
    I’ve forgotten what’s it’s like
    To feel normal again
     

    I need a holiday
    To escape from M.E.
    A break from this battle
    That I must face daily
     

    I want a holiday
    A break away from me
    A break from this illness
    To become M.E. free
     

    I need a holiday
    To escape this life now
    To rediscover me
    If only I knew how
     


    Thank you Jo for all that you do and all the help and support you have given to me and many others. 
     
    Let's hope that we all have a permanent holiday from this illness one day! 
     
    Merci beaucoup
     
    The French Femme
     
    A bientot
    xxx 
     
     
     

    Sunday, 6 April 2014

    Isolated

    Many people with a long term chronic illness become isolated.

    There could be a combination of reasons for this. Perhaps you can identify with any or all of the below
    • you lose contact with family and friends who don't understand your illness or who don't know what to say or do.
    • you may become bed bound or house bound and are no longer able to leave the house.
    • you are unable to work.
    • you are no longer able to socialize.  
    • you are too ill to spend long on the phone, if at all
    • you may be too ill to write letters 
    • you may not have access to a computer
    • you may be too ill to spend a lot of time on the internet
    • you may live in an isolated place and are unable to drive or use public transport
    • you live alone
    Recently I have felt more isolated than normal.


    Why? Simply because I had computer problems and for nearly two weeks I was without one. I lost contact with my friends and family. I lost all the help, friendship and support I find on a daily basis through my computer. Most of it is on face book where I have built up over many years a wonderful network of friends who make all the difference to my life. Without it I felt totally lost, had withdrawal symptoms, felt lonely and started to feel depressed. I had other things I could do and took to writing more poems. But I missed that contact. 

    Thankfully I have now resolved my computer problems but it has made me think and realise how my life has changed and how I am dependant on my computer and this virtual world I have created. 

    I have written a poem about being isolated 


    Isolated
    From all I know
    From all I love
    Fills me with woe 
    Isolated
    From family
    Don`t understand
    Or visit me 
    Isolated
    As friends I lose
    Living alone
    Now a recluse 
    Isolated
    Now friends `online`
    Virtual world
    Eases my time 
    Isolated
    Sick and in pain
    My life now changed
    Nothing the same 
    Isolated
    And so lonely
    I cry some tears
    Thinking “If only” 
    Isolated
    Each endless day
    In these four walls
    I have to stay 
    Isolated
    I hope and pray
    I can escape
    And get away 
    Isolated
    Watching outside
    Through my window
    Life that`s not mine 
    Isolated
    Behind a veil
    Trapped inside
    Just like a jail
     
    So what can you do to avoid isolation? 
    Of course without recovery to full and normal health it's hard not to feel isolated and there is only so much we can do.
    Here's my list of suggestions that may help you to feel less isolated and lonely
    • sign up to face book or any other online forums relating to your illness as it helps so much to find others who suffer the same
    • find and join a local support group in your area
    • when you feel well enough arrange to have a chat with a friend or a member of your family who understands and is sympathetic, as even five minutes can lift your spirits
    • write a short letter if you are able and maybe you will receive one in return
    • if you feel well enough go out but plan and make sure you have rests before and afterwards
    • if you feel well enough arrange for a friend or family to visit for a short while but don't be afraid to ask them to leave
    • I find listening to the radio or the tv helps me
     
    Maybe you have other suggestions. I would love to hear from you.
    Meanwhile, as in the photo above, this caterpillar has found her wings and can fly away from isolation. 
    A bientot from the French Femme
    xxx 

    Saturday, 22 March 2014

    I LOOK BACK

    It`s hard to live with a long term chronic illness. We are forced to adapt and change. Life can no longer stay the same. We go into grieving for the life we have lost and it`s hard to find a way forward and a new life.  We look back at the life we once had and the person we used to be. We might be tempted to say "If only.." or "What if?" but that doesn`t help.

    Personally I try to take one day at a time, not to look back and not too far in the future. Otherwise that`s just a recipe for depression. Still sometimes I am reminded of my life before illness. This short poem of mine is a summary of a look back and looking forward...


    I Look Back

    I look back
    And what do I see?
    Someone else
    That I used to be,
    A person
    Happy and carefree,
    A life that
    Was full and busy,
    A purpose
    With some dreams for me,
    A stranger
    Was that really me?
    Look forward
    And what do I see?
    I`m not sure
    What I can now be,
    All is lost
    A life that`s empty,
    Life ended
    No future for me,
    A new life
    I must make for me,
    A life sick
    A life with M.E.
     
    But what if you could go back to the past. What would you do differently? What advice would you give to your earlier self? 
    In Star Trek The Original Series there`s an episode about time travel The City on the edge of forever where `The Guardian of Forever` is a door way to any time and place.
    This `Guardian of Forever` is used again in Star Trek The Next Generation in a story called Imzadi where Admiral Riker uses this door way to save Deanna who is the love of his life and his Imzadi.
     
     
    Now imagine if you could use such a door way and go back in time. What would you do or say to advise your earlier self? 
    If I could use the time portal as in Star Trek I would go back in time and tell myself about M.E.
    These are the things I would say
    ·         Take it seriously from day one
    ·         Don`t push yourself
    ·         Don`t do graded exercise
    ·         Change your doctor earlier to one more sympathetic and understanding
    ·         Don`t resign from your job
    ·         Try to get ill health retirement
    ·         Don`t force yourself to work at any cost
    ·         Don`t take on a new job when you know deep down that you`re not well
    ·         Be honest with yourself about your abilities and your health
    ·         Find out as much as possible about your illness
    ·         Accept that it is a long term chronic illness
    ·         Accept it sooner and not fight against it
    ·         Know that you will have some bad and good periods
    ·         Avoid stress as much as possible as it will only make you worse
    ·         Don`t assume that you will get better
    ·         Plan you life according to the restrictions of the illness
    ·         Rest and relax more
    ·         Don`t waste time trying to convince family & friends that you are truly ill
    ·         Learn how to best pace and manage your illness
    ·         Say “no” more often
    ·         Don`t be bullied into doing things that are too much for you
    ·         Don`t worry about the jobs you can`t do
    ·         Take better care of yourself and put yourself first
    ·         Push for more help and support from the medical profession
    ·         And above all know that life will go on albeit not the same
    I wonder if I had all that help and advice things would have been different?
    So if you had the chance to use such a time portal what would you say to your earlier self?
    Well time travel hasn`t been discovered yet! I can look back at my past but I can`t  go back and change it.
    BUT what I can do is to help others who are newly diagnosed with M.E. I can give some help and advice which I didn`t have. I can help others not to make the same mistakes.
    Here`s a good starting point for the newly diagnosed. Although it`s a relief to have a diagnosis it can be overwhelming.
    Now I wonder what I would find if I used the time portal to make a trip into the future. Perhaps it`s best not to know!
    A Bientot
    From the French Femme xxx