Saturday, 1 September 2018

KLARA WILSON

Bonjour, 

I'm writing this blog with a sad heart and many tears. I've lost a friend and an M.E. warrior to the illness M.E. and cancer. 

Some people don't believe that you can have 'real' friends on Facebook.
Klara Wilson was just one of those friends and although I never met her we helped and supported each other. She was part of the M.E. community. Our friendship started back in 2013. So I feel her loss very deeply. 

Klara was a very kind and supportive friend. Others describe her as a brave fighter, with unbelievable spirit, an amazing person, positive, humorous, witty,  an inspiration, so much energy and enthusiasm, passionate about politics and human rights.

Mike Harley interviewed Klara about M.E. in her native Czech Republic six months ago.  He met her sister and mother the day before he ran the Prague marathon in May 2015.     

But above all she has left a great legacy in terms of ME and ME/CFS awareness images she created as part of ME Awareness pics 
She has taught so many with her awareness raising and will continue to do so.  

It's never easy to raise awareness when feeling so ill. It takes a lot of effort and sacrifice to one's health. Klara despite having severe ME contributed a lot to raising awareness. 

When I first decided to put my poems about M.E. into a book I didn't know where to start. Klara and her husband Rob both helped me in those  early days and designed a cover for my book 'My A-Z of M.E.'  




and to illustrate my poem 



I will be forever grateful for the help both Klara and Rob gave me.  

I hope on reading my blog you will share some of these images. 

We need to continue to raise awareness and understanding. 

I don't want more of my dear friends to disappear because of this cruel illness. 

A bientot
The French Femme 
xxx


   

Friday, 24 August 2018

CRAZY

Bonjour, 

In this blog I want to talk about the feelings and emotions that people may go through when first becoming ill with M.E. 

When I first became ill I had no idea what was going wrong with me and neither did my doctor or my family and friends. I felt that no one believed me and of course there was nothing obvious to see. I started to think that I was imagining all this. I thought that it was only temporary - just a case of the flu. I thought that one day I would wake up and realise that it was all a dream. BUT that never happened. My family told me to "Snap out of it and get back to work". They thought that I was just being lazy. So I started to doubt myself and thought that it was all in my head. I thought that I was going crazy.  I pushed myself over and over again to go back to work. I had no other explanation for what was happening to me. Neither did my doctor at the time. I was sent for all sorts of tests and everything came back 'fine and normal'. YET I knew that I was not well and not fine! 

When at last I was given a diagnosis I felt relief and knew then that I was not going crazy. 

However, having a diagnosis doesn't end the disbelief and misunderstanding from others. It's taken decades for some of my family to accept that I really have a chronic illness called M.E.  

So often I look well. 

Sometimes I may be able to push myself to do a little more than my comfortable limits BUT there is always payback. No one sees that.

Some days are better than others. That's when I may be more visible

Some days when I feel very poorly and then I become invisible.   

So often the doctors do repeat tests and still there is nothing to find. 

There is still no one single test to diagnose M.E. and usually it's a case of eliminating other conditions and illnesses along with case history and symptoms. 

I wish and hope that one day there will be one sure test that validates my illness and that of so many others. 

In the meantime I know now that I'm not going crazy! 




Crazy

I suspect I`m going crazy
As no one seems to believe me!
All say that I look so healthy
Since there is nothing they can see.

I feel that I`m going crazy
As I have such a strange feeling.
Some say I`m idle and lazy
But they have no understanding.

I think that maybe I`m crazy
And perhaps it`s all in my head
I used to be very healthy
But now I`m disabled instead.

I wonder if I`ve gone crazy
Or maybe it`s all a bad dream
Then I`ll wake to reality
And things are truly as they seem.

Is it my imagination?
Am I really losing my mind?
There must be some explanation
If only the cause I could find. 

My self doubt is now growing strong
As all say that I look “just fine”
Perhaps I have got this all wrong
For there is no obvious sign.

“Snap out of it” people tell me
If only it was that easy.
I have invisible M.E.
Which is so difficult to see.

This is such a crazy illness
I know I`m not losing my mind
But all the doubt is causing stress
While there is nothing wrong to find!





A bientot
The French Femme
xxx  

Tuesday, 31 July 2018

FEAR

Bonjour, 

In my blog of June I promised to write about another emotion that we may face. 

So this time I want to write about FEAR. 

FEAR can be an unpleasant emotion caused by the threat of danger, pain or harm. We often associate fear with some horror film or dreadful event but it can occur in our daily lives. 

FEAR is an emotion but it can also can manifest itself in a physical way by anxiety or panic attacks

It seems that anxiety symptoms and panic attacks are often experienced by people with M.E. or Fibromyalgia.  

I have suffered from both of these. 

My panic attacks occur in situations of stress and where I feel that I have no  control. They are most unpleasant and intense with increased heart beat, chest pain, unable to breathe which leads to tingling and numbness in my hands, sweating, as well as feeling sick and dizzy. A previous doctor prescribed medication which helped and of course things like deep breathing (especially into a paper bag) with relaxation helps recovery from such an attack. In the long term I have eliminated the sources of stress as far as possible and know when and how to avoid situations that will bring on such an attack. 

More recently I've suffered feelings of anxiety as a result of stress and worry, notably over my claims for benefit and financial problems. These feelings are not as intense as a panic attack and for me mostly occur at night time. Once again I asked my doctor for help to cope with this anxiety and she prescribed a natural supplement which has helped me through a difficult period. Thankfully the source of that anxiety has gone away - for now. 

So let's take a closer look at what is at the root of our FEAR 

It could be any or all of the following
  • fear of not being able to make a living
  • fear of losing everything
  • fear of the unknown
  • fear of change
  • fear of not being understood
  • fear of the pain that may never go away
  • fear of so many symptoms 
  • fear when we can't breathe and 
  • fear we may be having a heart attack  
  • fear of loneliness
  • fear of being alone and unable to cope
  • fear of being abandoned 
  • fear of examinations, treatments and never ending tests
  • fear of hospitals and doctors who disbelieve us
  • fear of not being able to explain
  • fear of being told that you are a fake 
  • fear of being forced into treatment like GET (graded exercise therapy) or CBT (cognitive behaviour therapy)  that only makes us worse
  • fear for the future
  • fear that you are going to die


Fear
That no one can understand me
Hide the truth or I’ll seem crazy
Fear
To pay my doctor a visit
He may say there’s nothing in it!
Fear
Of all the tests I’ll have to make
Results making me look a fake
Fear
I’ll be asked to do CBT
Say I’m depressed or unhappy
Fear
That I’ll be forced to follow GET
And all of their demands be met
Fear
I’ll be left totally alone
With no help, to cope on my own
Fear
Of a future that now looks bleak
What can I do feeling so weak?
Fear
That my life has come to an end
A prayer to God I must now send!




I'm not sure that I suffered like this before becoming ill but I know now that I have to try as far as possible to eliminate triggers that make me feel worse. 

I can't live in perpetual fear. 

I have reduced the sources of stress and worry as far as possible. 

I have increased my practice of meditation. 

I talk about how I'm feeling with others whenever possible or I write them down. 

However in life it's impossible to totally avoid all stress and worry. 

Perhaps the key is in how we manage it. 

What do you think? 

A bientot
The French Femme   
xxx

Thursday, 19 July 2018

I NEED A HOLIDAY

Bonjour, 

It's that time of year when lots of people go on holiday but not me. 

Many of us with M.E. are unable to go on holiday as our resources are limited and we are just too ill. 

It's not just missing out on a holiday in the normal sense but having a break from the life of never ending illness. 

So I thought that I would revisit one of my poems about the need to have a holiday from M.E. 




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


Wouldn't it be wonderful to have even just one day or a weekend when we feel well, normal and able to do all the things that other healthy people are able to do? 

Wouldn't be wonderful if we could go on holiday without suffering payback?

Wouldn't it be wonderful to have our lives back? 

Maybe one day. 

I think we have to live in hope. 

In the meantime I'm going to try and compensate with other small pleasures. 

I do have some gluten free ice- cream in my freezer 😃 




A bientot 
The French Femme 
xxx


Thursday, 21 June 2018

SOMETIMES I FEEL ANGRY

Bonjour, 

Since my last blog I've been trying to recover from the after effects of M.E. awareness month. Maybe some of you have been feeling the same. 

When you become ill with a chronic illness it's normal to go through so many different emotions. One of them I've felt is to be angry. 

You may also feel angry because 

  • your life has changed
  • you can no longer do the things that you once enjoyed
  • you hate feeling sick every single day and every minute of that day
  • you see no ending in sight
  • you feel lost and cheated of the life that could have been yours
  • you are so fed up of the pain and all the multitude of different symptoms
  • you are angry because your dreams and ambitions seem to have ended
  • you feel as if all hope is lost
  • you hate the life that you now have and find it hard to accept
  • you feel sad, you feel mad, you shout, you cry in anger and frustration
  • you hate being ill and disabled
  • you hate your illness and want it all to end

Angry

I hate you
Look what you`ve done!
My life is gone.

I hate you
Making me sick
So very quick

I hate you
Please go away
Why do you stay?

I hate you
You`ve cheated me
Of all that`s me

I hate you
Here all the time
Wrecked life of mine

I hate you
Give me a break
From pain and ache!

I hate you
For ending dreams
No hope it seems

I hate you
And my life now
But accept how?

I hate you
You make me sad
You make me mad!

I hate you
I cry and shout
Just go, get out!

I hate you
You make me cry
And I ask why?

I hate you
Poison in me
Known as M.E.  



I think that it's ok to once in a while release some of the anger and frustration and have a shout or a good cry. 

The danger is if you allow this to consume you and takeover. It's so easy to fall into a depression and feel sorry for oneself. But that won't really help. 

We have to find ways to combat and deal with the feelings that come our way. I personally try to find something that will distract my thoughts or try a little meditation. 

What helps you to deal with your anger? 

In the next blog I hope to be discussing another feeling that we may all experience. 

Until then....  

A bientot
The French Femme  




Wednesday, 23 May 2018

AWARENESS RAISING ALL YEAR

Bonjour, 

I want to talk about a few things in my blog today. 

Firstly, Myalgic Encephalomyelitis is an illness that changes all the time - every year, every month, every week, every day and every minute of that day. 

It's unpredictability and variability means it's hard to cope with and difficult for others to understand and accept. 

I never know how I'll feel when I wake up each day. I don't know what symptoms may come along each day. It can all change very quickly. 

This makes it impossible to plan anything with surety and reliability.  

Some days I may feel relatively better, either physically or cognitively, and may be able to do a little more. However I have to pace and manage any activity so as not to bring on post-exertional malaise or a relapse.    

I also have the problem that assumptions are made by others. They think that just because I can do this today I must be ok. They may think that I'm not really ill, especially as I may look well. They may think that I can repeat the same activity. They may think that I'm recovered. 


Just because
I can do this
Today
Doesn`t mean
M.E. has gone
Away

Just because
I look well and
OK
Doesn`t mean
I really feel
That way

Just because
There is nothing 
You see
Doesn`t mean
That I`m fine and
Healthy

Just because
You don`t accept
M.E.
Doesn`t mean
There`s nothing wrong
With me

Just because
You don`t believe
M.E.
Doesn`t mean
You can treat me
Badly

Just because
You don`t understand
M.E.
Doesn`t mean
That you can treat me
Disrespectfully

Just because
You don`t understand
My illness
Doesn`t mean
That you can cause me
Hurt and distress



Also within the parameters of the illness there are different levels of severity and ability.  

There have been attempts to establish scales of disability as a guide BUT I don't think that we can fit into a little box and stay in that box. 

I think it's quite common to move up and down these levels at any time - even within a day. 




Secondly, today is the first anniversary of the death of Merryn Crofts. She is only the second person in the UK, and the youngest, to have M.E. as recorded official cause of death.  

So it's a terribly sad day for all her family and for the M.E. community. 

"Can people die from M.E.?" is a a frequent question. The answer is "yes in some cases". 

That's why it's important to raise awareness of just how life threatening this illness can be.     



  

Thirdly,  May and especially the 12th May is an international day of awareness. I and many others have made a huge effort to raise awareness and understanding this month at some cost to our level of health. I don't think I've ever seen such a huge wave of awareness raising and it makes me feel encouraged and hope that the tide is turning. 

BUT we have to maintain that wave and keep raising awareness and understanding. I don't want to read of more needless and tragic deaths because of this illness. 

SO join me whenever you are able to continue the fight.    


     

A bientot
The French Femme
xxx

Sunday, 6 May 2018

MY STORY FOR M.E. AWARENESS WEEK

Bonjour, 

We all have a story to tell about how we became ill. This is mine.   

It began in 2002 when I started to notice that things weren't quite the same. It felt like I had flu. I had planned to go and visit a new and exciting man that I had met recently on a Poldark Appreciation Holiday. I think that holiday was the last time I can recall feeling well. 
  

Anyway I'd had a couple of weeks off work and still felt unwell but didn't want to cancel my next trip to Cornwall. After all I thought that I had met the love of my life! So I pushed myself to go but struggled all the time. I can recall so clearly a walk where we had to go up a steep hill. Now up till then I had been a keen walker and hiker. Normally it would have been easy. But this time it seemed impossible and it might as well have been Mount Everest. I also recall feeling really cold at that time even though it was the middle of summer. I had no idea what was happening to me. 

After this visit to Cornwall I went back to work and yet I still didn't feel really well. I pushed myself to keep going. I had a house and mortgage to maintain and was a single mother. What else was I to do? 

The pattern repeated going to work and then once again sick leave. At that time I was a full time union representative for Unison and other unions. I loved my work and often went to extra weekend courses or conferences. In that summer of 2002 I went to a conference in Bournemouth. 


I went to see my doctor a few times as I couldn't understand why I always felt so tired and had no energy. She was of no help and said that some of the flu type viruses in the summer could be worse than those in the winter. She even suggested that as soon as possible in the autumn I have the flu jab. I had confidence in my doctor so I did just that. 

Of course you might be wondering what happened to Cornish man! Well although I saw him again a couple of times it didn't work out. I was so disappointed and upset. 

That autumn I continued to push myself at work. I still felt below par and would often take sick leave. After the disappointment in love I also had a crazy phase of going on lots of blind dates in the search of a another man in my life. What was I thinking? 

There were problems at work which only added to my stress and pressure. Somehow I managed to keep going until the end of the year and christmas. 

That was when I finally collapsed. I had never felt so ill in all my life. It was indescribable. I could hardly get out of bed, I wanted to sleep all the time, my whole body ached, I felt so dizzy, my glands were swollen and my throat was so painful. It felt like I was dying.   

At the beginning of 2003 I went to see my doctor again and this time took my mother as support. The doctor seemed at a total loss and said "What do you expect me to do?". I was disgusted. She was the doctor after all. I walked out in tears and frustration. There had to be some reason for how I was feeling. I wasn't making this up. 

So I changed my doctor and he seemed more open and understanding and sent me to the hospital for lots of tests. 

In the meantime my friends and I had for a long time planned a weekend break in The Cotswolds. I didn't want to miss it and let down my friends. So once again I pushed myself when I should have stayed at home and rested. This photo of me was taken at the time. I can see the illness in my face even though I'm trying to smile. This was the last time I wore my hiking boots.    



After my complete collapse I never went back to work. It seemed as if my life was falling apart. I had no idea why I had become so ill. I had no idea what this illness was and had no way of finding out. 

I went to the hospital and did all the blood tests. Of course nothing showed up. Eventually I saw a doctor at the hospital who said that, considering all my symptoms and my history up to that date, I had chronic fatigue syndrome. I felt so relieved that at last I had a diagnosis. However I was told that nothing could be done to help me but they suggested graded exercise and some cognitive therapy. Once again I had confidence in the medical profession and tried some graded exercise. That nearly killed me! Needless to say I stopped that at once. 

Since my diagnosis I've had little real help and support from the medical profession and have learnt myself about this illness myself and how to live with it. 

All the things that I previously enjoyed became too difficult or impossible. 

My hiking boots stay in a box at the back of my cupboard. I don't know if I'll ever be well enough to wear them and go hiking again. They represent my old life and the old me. 

I miss me and that life that used to be mine.   

In it's place I've had to find a new life. I've had to reinvent myself. Perhaps I would never have written poems and published books if I had carried on as before. Perhaps I would never have written a blog. 

Yet I can't but help miss my old life and all the things I loved. This poem doesn't include everything that I miss. That would be a very long poem! 

On the final note about love - I did meet a french man who really was the love of my life. Life of sorts can go on despite illness. 

Anyway that's another story............... 





A bientot
The French Femme
xxx