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 12^th 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. 

http://www.may12th.org/ 

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         

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 

 

 

 

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