Thursday, 13 April 2017

TOO BUSY

Bonjour,

I hope you're not too busy to take a few minutes to read my latest blog! 

Before becoming ill I had a full and busy life. It felt as if I didn't have enough hours in the day or days in the week to do all that I wanted to do or achieve. 

Now I feel as if I have too many hours in the day and days that seem to never end. But I just don't have the energy or feel well enough to do the things that I would like to do or need to do. 

I feel detached from the real world. 

Family and friends seem so busy with their lives.  




It reminds me of a Star Trek episode "Wink of an eye" where the crew of the Enterprise come across a race of aliens who have been poisoned by the radiations from the core of their planet resulting in an incredibly accelerated metabolism. So the crew are unable to see them and just hear a buzzing sound like an insect. They find the buzzing is actually voices at a sped-up pace. They are a race of beings who move through time at a rate so fast that they're all but undetectable




I too feel as if I'm in slow motion like the crew of the Enterprise in this episode and everyone else is moving so fast that they are almost unseen.  

It can feel like I'm forgotten. That just adds to the loneliness and isolation. 

Having a long term chronic illness can isolate us from family and friends. 

Do you feel the same?   



                                                  Too busy

You say you’re too busy
To come and visit me
Too busy with your life
No time to spare for me

You’re always so busy
And have no time for me
Too busy with your life
Have you forgotten me?

You always seem busy
No time to talk with me
Too busy with your life
To even think of me

You’re always so busy
That once used to be me
Now I’m isolated
And I feel so lonely

You say you’re too busy
But please come and see me
Just stop for a moment
That will make me happy



   
Au revoir 
From the French Femme xxx

Tuesday, 7 March 2017

TRAPPED

Bonjour, 

I'm sorry if this blog is somewhat negative and depressing but this is the reality for so many. 

Feeling trapped is common amongst people with M.E. and most likely for those with other chronic illnesses. 

We are trapped 

  • physically by illness
  • in our own bodies
  • in our own homes 
  • in our bedrooms
  • in darkened rooms as we have become sensitive to all light and noise
  • in relationships that may have become abusive
  • dependant on others
  • we feel alone and helpless
  • perhaps feel suicidal
  • feel stuck and that there is no escape
  • feel that we there is nowhere we can go
  • feel that we no longer have any control of our lives
  • feel that it's going on forever without end
  • feel that we are imprisoned 
  • feel that there is no way out  
  • feel trapped in an alternative world


Trapped


Inside this body I feel trapped
Hard to move and energy sapped.
A pain that keeps me in this shell
It’s like my own personal hell.
Unable to open my eyes,
Get dressed or out of my bed rise.
Like a bubble, smaller each day,
I see my life slipping away.
Cut off and in my home I hide,
To relinquish that world outside.
Isolated from all I’ve known
Now living my life all alone.
It’s like I’ve moved to M.E. land
A country hard to understand
No longer able to see me
That person I wanted to be.
This world is not of my choosing
And now there’s so much I’m loosing
Friendships difficult to maintain
My illness too hard to explain
My family all stay away
Avoid me, unsure what to say.
I want to end this trapped feeling
And to find a way of healing.
I want to break free from this pain
So I can start living again.
I want to escape this purdah
I feel I can go no further!
  



I live in hope that one day we will all be able to break free....... 

From the French Femme
xxx 

Thursday, 9 February 2017

FRUSTRATED

Bonjour, 

When you suffer from a long term chronic illness like M.E. you go through different emotions.  

In this blog I want to talk about one of the emotions that many of us experience. That's the feeling of being frustrated. 

So what makes us feel frustrated? 

We may feel frustrated 

  • by the reaction and response of so many doctors
  • by the lack of change and progress
  • by the feeling that we are neglected
  • trying over and over again to find things that might help, spending lots of money in the process but rarely finding anything that helps. 
  • by the lack of understanding
  • by people's attitudes e.g. get up and get on with it, everyone gets tired, don't be lazy 
  • we often don't look sick and so people assume that we are ok
  • having to repeat the same points over and over again
  • by the restriction of our life and our choices
  • by so many symptoms 
  • by insomnia
  • by brain fog when our brains no longer seem to function
  • mixing and forgetting words
  • being stuck in the house, especially on a beautiful day
  • by loneliness and isolation
  • having to cancel so many appointments and letting people down
  • our hopes and dreams that can no longer be realized 
  • losing a purpose in life
  • no longer being part of 'normal life and society'
  • not being able to use or apply the knowledge and skills that we have studied and worked for
  • not being able to make plans because of the variability of the illness
  • not being able to pursue hobbies and interests
  • not being able to go out to places like the cinema, theatre, church, restaurants or shops
  • losing our independence, the spontaneity of life, just being able to go out when and wherever we want
  • losing our social life
  • not being able to converse with others
  • the unpredictability of this illness   
  • losing contact with people
  • by just being ill all the time and for so long    

  You make me
Frustrated
So angry
And irritated

You make me
Frustrated
So tearful
And feel defeated

You make me
Frustrated
Uncertain
And disappointed

You make me
Frustrated
A failure
And my life`s wasted

You make me
Frustrated
Cry and shout
That you are hated!

Bottling up our frustration can lead to anger, tears, aggression, loss of control or even depression. I believe it's better to share our frustrations with others. Perhaps we should reflect on what is making us so upset and how can we deal with our frustration. Maybe we need to look at our life and our situation in a new way. Perhaps our frustration will ease with acceptance and when we try to change all these negatives into positives. 

In the meantime if you are feeling frustrated have a scream and shout and see if that helps!! 


A bientot
From the French Femme
xxx

Sunday, 8 January 2017

SO MANY SYMPTOMS

Bonjour,

Bonne AnnĂ©e et meilleurs voeux pour 2017. 




It's that time of year when we look back and reflect as well as thinking about the year ahead. 

For me personally, 2016 brought a lot of changes in my life. Inevitably this has had an effect on my health and I've had some setbacks. 

It's been 14 years since I first became ill and with what seemed like flu that never went away. I like to think that over the years since then I have learnt how to manage my illness but sometimes it surprises me and reminds me that it's a permanent part of my life. 

M.E. is a complex and forever changing illness. There are so many symptoms that fall under the umbrella of M.E.

You can find different lists of symptoms and one of the most comprehensive is on the web site Hummingbirds' Foundation for M.E.  

These symptoms are forever changing. Sometimes new symptoms develop. Not everyone suffers with all the same symptoms and there are different levels of disability.  

However there are certain core symptoms which are required for diagnosis. The latest criteria is The ME International Consensus Criteria 2011 

A patient 

  • will meet the criteria for post-exertional neuroimmune exhaustion (A), 
  • at least one symptom from three neurological impairment categories (B), 
  • at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C), and 
  • at least one symptom from energy metabolism/transport impairments (D)
There are so many symptoms that it can feel like a complete system breakdown that affects every part of the body. And what's more many of these symptoms are difficult to see or explain. 

So in order to continue to raise awareness and understanding, in 2017 I hope to publish a new book of poems entitled 'So many symptoms'. So watch this space!


  
So many symptoms

There are so many symptoms
Which come along with M.E.
And make it extremely hard
To diagnose properly

There are so many symptoms
How do you know it`s M.E.?
With no one simple, clear test
It seems like a lottery.

There are so many symptoms
Which are confused with M.E.
No wonder there is much doubt,
Delay and anxiety

There are so many symptoms,
Which are difficult to see.
So doctor`s don`t believe us
And question our sanity

There are so many symptoms
Which come along with M.E.
A complete system breakdown
That affects the whole body. 





A bientot
From the French Femme 
xxx