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

Friday, 16 December 2016

TIME

Bonjour

I want to dedicate my last blog of 2016 to my Uncle Graham who has been battling against poor health for many years now. 

Sadly he is now losing that battle and his days are numbered. 

Yes this is sad but like myself he turned to writing poetry to express his thoughts and feelings and to write about the people in his life. 

I've chosen to share the one he has written about time. 

I think we can all relate to it. 

Time is precious and we should live each day as if it's our last. 

So this christmas whatever you are doing, wherever you are, whoever you are with be grateful and make the most of it.    

A bientot 
From the French Femme
xxx



A poem called time

Time is such a little word
Yet so vital to our lives
We all forever chase it
As bees around their hives

Time is all around us
Although it cannot be seen
It is forever moving forward
Yet we all know where it has been

It constantly controls our pace
And for me the reason’s clear
Most days it is like we are in a race
And to lose fill us with fear

We should take time to contemplate
How to slow this lifelong ride
For I believe it’s never too late
To follow nature’s guide

As we all have allotted time
From the moment we are born
We each must find our way through life
Embracing each new dawn 

Time alas will bring dark days
Along with pain we all must bare
Yet through time we’ll find a way
To lift the burden of despair

Given time we will discover
Time shared will set us free
Be it friendship or a lover
Togetherness is the key

Time is a consultant throughout space
Predating all before
Yet as we as others have our place
As time will show I am sure 


 





Tuesday, 15 November 2016

PHOTOS

Bonjour,

This blog is going to be a bit more personal but one you can probably relate to if your life has also changed because of chronic lifelong illness. 

They say that you should never look back in the past or too far in the future but live in the moment.

However I have found myself recently looking at old photos of myself and realise how my life has changed.

I once had a job and a career. 

I once used to enjoy many activities outside of work, in the evenings and at the weekends.    

I once used to take part in conferences and meet interesting people.  

I once had an active social life. 

I once used to be able to join in fully with family events and occasions. 

I once used to go on foreign holidays. 

I once used to be able to take long walks and see interesting places. 

I once used to enjoy playing tennis, swimming, cycling and hiking. 

I once felt well and healthy. 

Now all that has gone and my life has changed. 

My life is limited and restricted by this illness M.E. 

So when I look back at photos I'm reminded of what my life used to be like and I feel sad. 

Some may say that people with M.E. don't look ill but I can see the illness and suffering in my eyes when occasionally a photo is taken of me now. 

Well I had better put my photos away. It's not good to look back but it does remind me from time to time of what I've lost. 

Instead I should try to be grateful for what I still have.....

A bientot
From the French Femme xxx



Photos

I`m looking at photos
Of those days from the past
Which were full and active
Sadly they didn't last

When looking at photos
It`s a stranger I see
My life has changed so much
By this illness in me

I look back at photos
And feel upset to see
A different person
One healthy and happy

When I look at photos
I don`t recognise me
An echo of myself
Of how I used to be

If I look at photos
Taken more recently
I look like a shadow
Of a person once me 

I look at my photos
And wish for the old me
That one in the photos
Young, fit and healthy.






Tuesday, 4 October 2016

THE MEDICAL

Bonjour,

Those people with a long term chronic illness can not have missed the recent statement by the Work and Pensions Secretary Damian Green that it was pointless to re-test recipients of Employment and Support Allowance (ESA) with severe conditions and no prospect of getting better. 

So of course this has given hope to all those with M.E. who have to go through repeated medicals. BUT it's believed that recovery from M.E. is possible so it's unlikely to be included. Back in 2003 I was told that I would recover in 5 years. While I've had some better periods, I have never fully recovered and at times gone into relapse (see my last blog about remitting and relapsing M.E.)     

My thoughts are as follows 
  1. What is recovery? 
  2. How do we know full recovery possible? 
  3. Can we be sure that those who claim to be recovered genuinely had M.E. in the first instance? 
  4. There is still not one diagnostic test that can be done for M.E. although there are tests which can be done which are helpful in making a diagnosis
  5. The claimed rate of recovery is very small    

If M.E. is not included in the list of severe conditions then we all face never ending stressful and humiliating medical tests. 



The Medical

I walk into the room
You give me a cold stare
I feel anxious, afraid
And collapse in the chair

You ask lots of questions
Which I have to reply
But my brain’s like a fog
And it’s hard not to cry

I’m made to feel guilty
Like I’m here for a crime
That you don’t believe me
And it’s all in my mind

You ask me to stand up
To walk across the floor
Raise my arms in the air
And then question me more

I feel like a monkey
Who’s asked to do a trick.
How is this the right way
To treat the very sick?

At last it’s all over
I stumble out the door
I feel drained, exhausted
 I can’t take any more!



I've been through such a medical which has caused me a great deal of stress, anxiety, worry and a relapse. I would love to go back to work. I never anticipated and wanted a life like this. Yet I find it insulting the way that I and so many people are treated. 

I hope that one day there will be better understanding and acceptance of this illness. I hope that one day we will have a clear diagnostic test for all. I hope one day that these cruel and demeaning medicals will end. I hope one day that we will be given proper care, help and treatment. I hope one day that we will have a chance of recovery and we can get our lives back. 

I hope....

A bientot
from the French Femme
xxx       




  

Monday, 19 September 2016

DON'T BE FOOLED!

Bonjour, 

I have recently been reading about the despair when someone with M.E. goes into a severe relapse after being relatively well for many years. In fact it's possible to feel almost recovered and to have a 'normal' life. Then all of a sudden it changes over night and the person goes back to how they felt when they first became ill. 

So how can this happen? 

It seems that some people, including myself, have a remitting and relapsing form of M.E. and so there are good periods with unexpected relapses. 
It's as if we have been fooled into believing that we are well and have recovered. No wonder so many people have trouble understanding this illness. 

   Fooled

You fooled me
Made me believe
That I was well

You tricked me
An illusion
Just like a spell

You deceived me
Made me behave
All normally

You cheated me
And made me think
I was healthy

You duped me
Gave me false hope
That illness was past

You fooled me
Now in a relapse
It did not last!




So what's going on? 
The late Dr Elizabeth G. Dowsett said 'It is an unexpected deterioration in the condition of a sick person after partial recovery'.  

What causes a relapse? 
The late Dr Elizabeth G. Dowsett said 'The commonest causes of such a reverse in ME appear to be mental and physical over-exertion and stress or secondary illness (usually and infection, possibly a minor one) before recovery from the first.  

So how can we avoid and manage a relapse? 
You can read and learn more here in ME Matters 

What is the difference between a relapse and post-exertional malaise
Post-exertional malaise usually happens 24-48 hours after overexertion and there will be a worsening of symptoms. Recovery may be possible after rest and can be relatively short. It seems that a relapse is much more severe and can last weeks, months or even years.  

It can be depressing and disheartening when in a relapse. I have been there a few times. However we have to hold on to hope that things will get better and that this is just temporary. 

I'm not an expert but have learnt from my experiences and that of others. I know that I should never be fooled by any signs of improvement as it can all change very rapidly. Sure there are ways which we can try to avoid a relapse and I have tried to adopt these. It's the unpredictable nature of the illness that makes it difficult to manage. 

So in the meantime DON'T BE FOOLED! 

A bientot
From the French Femme 
xxx    


Sunday, 17 July 2016

STOLEN

Bonjour,

Recently I have been touched and moved by so many heartbreaking stories of those with M.E. who have lost so much because of this illness. 

This illness steals our lives, what we once had and what could have been. 

M.E. does not discriminate and can affect anyone at any time in their life. 

M.E. affects women, men and children at all ages, cultures and socio-economic backgrounds.  However, women are more likely to acquire the condition

I at least I have lived about half of my life before being struck down by this dreadful illness. 

But I often miss those things that I used to enjoy and can no longer do. 

I wonder what my life would have been like if I had carried on the same track. 

It's so much worse for the young who become ill. They haven't even had a chance to live a life and do the things that they want or dream about. Their freedom and choice is stolen.  

So many lives are stolen 


Stolen

You've stolen my life
What once used to be me
You've stolen my life
To choose and to be free 
You've stolen my life
And what could have been me 






What has been stolen from you? 


A bientot 
From the French Femme
xxx