I'M NOT AFRAID

Bonjour

Comment ca va?

Don't worry I'm not going to write all this blog in French! However I do seem to be speaking and listening to a lot of French these days.

It's a tough time of year for so many and especially those with a chronic long term illness like M.E. 
I myself have been struggling on many fronts with pain, extreme fatigue and some depression. This is partly as a result of personal difficulties I have been facing but also because winter has taken it's hold with very cold and gloomy days. Spring still seems a long way off.

Whilst I was dealing with my personal problems there was a lot in the media claiming that we are afraid to exercise. Of course there was a backlash against that statement in the M.E. community. At that time I was embroiled in my own difficulties and felt unable to respond. So I'm just now putting together my response in this blog. 

This is a poem I wrote some time ago about my personal reaction when being told that I was too afraid to exercise

You said that I’m afraid 

You said that I`m afraid

To do some exercise

But it`s a choice I`ve made

As I know it`s unwise 

You said that I`m afraid

But you don`t understand

It`s not a world I`ve made

But part of M.E. land 

You said that I should do

A walk most of the days

But it will just lead to

Post exertion malaise 

You said that I`m afraid

And it`s all in my head

More effort should be made

But I could end up dead!

 

 

 I could never be excused of being afraid of exercise. I'm a positive person who before becoming ill loved to walk, swim and play tennis. I had a full and active life. Now I have days when it's hard to get out of bed. I'm not lazy and I'm not afraid. I just know that I have to be careful in what I do and so rest and pace my activities. If I push myself too much I risk PEM (post exertional malaise) or even worse a RELAPSE

'Those physicians and researchers who are familiar with the disease of Myalgic Encephalomyelitis (M.E.) are in agreement that activity or exercise can lead to a severe relapse'.



 

Here's a clip to the IIME 2010 conference where Dr Cheney makes the comment quoted.

    

I have learnt over the years how to live with and cope with my illness. I know what my limits are. I know what will make me worse. I have no choice but to and rest and pace. Of course there are times when adrenalin kicks in if we have to face and deal with the difficulties in life, much as I've had to do in recent months. As a result I've seen a decline in my level of health. I would love to put on my hiking boots and go off for a long walk but I can't. No I'm not afraid. I'm just being sensible and know only too well the consequences.

 

Anyway I'll stop here as even writing a blog has its consequences!

 

A bientot

From the French Femme

xxx  

 

 

 

TIME FOR CHANGE

Bonjour et Bonne Année 

It’s that time of year again when many people make new resolutions and changes in their life. 

It's also a time to look back at the previous year and reflect on all that has happened.  

 2014 was a particularly difficult year for me and I faced many challenges. It began with a lot of pain and I went into a pain clinic for a week. That helped me to develop new strategies and ways of dealing with and coping with pain. Following that some of my problems of pain have diminished.

I faced many difficulties in my marriage and the stress took has taken its toll on my level of health.  So I had to look at my life and make a decision for my health and my morale. It’s a hard and brave decision to take that first step but a necessary one.

People with a chronic and long term illness often have to adapt and make changes in their lives. At the beginning we struggle to accept and come to terms with illness.  Sometimes we have no choice but to accept and make changes in our lives. Of course along with change comes the inevitable grieving. It could be for our former life or for a lost friendship or relationship.  It’s hard to accept that things must change and at first we fight against making those changes. We are in denial.   

Grieving

It`s a bad case of flu
I`m sure I`ll recover
In just a week or two
Then it will be over 

I`ll push through this feeling
There`s nothing wrong with me
I`ll soon start to healing
And feel fine and healthy

I hate feeling like this
What`s happening to me?
I know something`s amiss
I`m running on empty 

I can`t go on the same
But I don`t want to stop
Something will have to change
Otherwise I`ll soon drop 

I refuse to accept
There`s something wrong with me
Many tears I have wept
Frustrated and angry 

Perhaps if I rest more
Or stay in bed all day
I`ll get back as before
And this will go away 

It`s all so frustrating
Despite all that I`ve done
I feel like I`m sinking
And my life has all gone 

I want my old life back
This really is not fair
At work I got the sack
And I can`t go back there 

Now there`s uncertainty
In the future for me
Must face reality
A new life with M.E. 

It`s all so depressing
I`ve lost what once was me
And all that I`m dreaming
 Now taken by M.E. 

I think this is my fate
So trying to accept
And let go of my hate
But it`s a hard concept

I`m coming to terms now
With a new life for me
I`ve no choice anyhow
But to live with M.E.

So here I am now in 2015 reviewing my life. I have already made some changes and plan more for the coming year ahead.  It’s all a bit scary but for the first time I’m doing what’s right for me and my long term health. For the first time I’m saying “No!” and no longer prepared to continue the same way. It’s TIME FOR CHANGE!

Maybe it’s time for you to take a look at your life and your relationships. What can you do to make changes, big or small? I’m not saying it’s easy but you owe it to yourself. We only have one life and even if suffering from a chronic illness like M.E. we should try and make the best of it.  

TIME FOR CHANGE 

Time for change
Let go of
The past 

Time for change
To accept
At last 

Time for change
No longer
Look back 

Time for change
And take a
New track

Time for change
To find a
New me 

Time for change
Chance to be
Happy

Personally I am going through a lot of changes and I have new ideas, plans and projects for 2015.
 So watch this space!



A bientot

From the French Femme xxx

 

 

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

 

 

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

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


   

BEYOND HELP?

Bonjour, 

Today, the 8th August, is SEVERE and VERY SEVERE ME AWARENESS DAY

Although I don't have severe M.E. , I do have relapses where I become more severe. I worry that I will stay at that level. So I only have a taste of what it feels like to have severe M.E. 

I can only imagine how it must feel to be at a severe or very severe level all the time. I have written some poems to try and express how that must feel. 

This is one of them 

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

I also dedicated this poem to poem  Lotta Wirström (from Sweden).  

Lotta became so ill that she sadly took her life.  

How many more have done the same? How many more give up the fight? Suicide is a common cause of death of those with M.E. 

Wendy Boutilier has done some amazing graphics and shared quotes for 8th August 2021. You can see them here  on Facebook and here on her website  

I accepted her invitation to write a quote. This is my contribution. 

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 today and every day.  

Thank you

A bientot from the French Femme xxx  

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