INVEST IN ME RESEARCH

Bonjour, 

In 2018 I have lost more friends in the M.E. community. It's so sad and makes it hard to keep going and to keep fighting. 

Of course it's hard when we live alone, have little, if any, help or support, face a lack of understanding, face a lack of recognition and always having to fight for benefits.   

Do you find it hard to explain your illness and how you feel? 

 Explain

How do I explain

My illness and its name?

How can I explain

My suffering and pain?

How can I explain

This feeling in my brain?

How can I explain

That nothing is the same?

How can I explain

Again, again and again? 

Through my poetry and my blogs I try to explain how I and others feel living with a chronic illness like M.E.  

I aim to increase awareness and understanding as well as raising funds for the charity Invest in ME Research.

A percentage of all of sales of my books is donated to Invest in ME Research and I have set up Just Giving pages. 

Exceptionally I'm proposing that in the next two weeks leading up to Christmas 2018 all proceeds of the sales of any or all of my books will be donated to Invest in ME Research 

My books are available in paperback and kindle editions on Amazon. 

The following is a summary of my books so far and I give the links to Amazon UK but they can be found worldwide. 

My first book of poems is entitled 'My A- Z of M.E.' 

This book is a collection of poems about M.E. (Myalgic Encephalomyelitis). They have been written from personal experience of living with M.E. for over ten years and also inspired by others suffering the same. This book is a must read for those living with M.E. or anyone facing the challenge of living with a chronic and invisible illness. It can also be used to help friends, family and anyone wanting to understand M.E. I hope this book will make a difference to the understanding of M.E. and help others to no longer feel alone with their illness.

My second book of poems is entitled 'So many symptoms' 

This is my second collection of poems about M.E. (Myalgic Encephalomyelitis). These poems have been written from my own personal experience of living with M.E. for over 15 years. They are also inspired by and reflect the feelings of so many others who suffer the same as myself. My poems may also relate to those who suffer with a different long term chronic illness. This book is a must read for those living with M.E. or anyone else facing the challenges of a chronic and invisible illness. These poems may also help friends, family and anyone else wanting to better understand M.E.  I hope this book will make a difference to the understanding and perception of M.E.


My third book of poems is entitled 'Life, love, loss and a whole lot more' 

This is my third collection of poems and is about my life, the love in my life, the influences in my life, the loss of love, the loss of friends and family, the loss of good health, places and moments in time and a whole lot more besides. Whilst I have enjoyed reading poetry for most of my life it has only been in recent years that I have taken to writing my own poetry. Since becoming ill in 2003 I've had more time to think and reflect on my life. Many of the poems are personal to me. This book, which includes photos, will give you a glimpse into the world of 'The French Femme'.     

My fourth book is entitled 'Life, love, loss and a little more'  

This is the same collection of poems as my third book but without the photos so is more affordable for those with limited resources.   

So please consider ordering one of my books in the weeks leading up to Christmas.

They may help others to better understand and help you to explain how you feel.  

Any one of my books could be a present for one of your friends or family or perhaps you would like to have one of these books as a present for yourself. 

Join me in this fight. 

Merci beaucoup

et au revoir 

The French Femme xxx  

SMILER GIRLPANTS & DR ANNE MACINTYRE

Bonjour, 

I started this week with yet again more sad news and the loss of two people in the M.E. community. 

So I want to dedicate this blog to them. 

The first one was Smiler Girlpants  who was Facebook friend of mine and an M.E. warrior. It's even sadder because it was sudden and she was talking about the future with her partner, a wedding and buying a home. She will be very much missed.

The other loss was Dr Anne Macintyre. 

"  Anne will always be remembered as an extremely kind and compassionate doctor who helped large numbers of people with M.E. over many years.

She helped them obtain a diagnosis, to get appropriate management advice and she provided support when they were battling with the DWP over benefit entitlement.

She will also be remembered for her book ‘M.E. A Practical Guide’ which was extremely well received and is still regarded by many as being one of the best."

Her book for me became the bible of M.E. 

When I fell ill in 2002/2003 I didn't have the internet and I knew no one who was suffering with the same symptoms as me. 

I searched everywhere for information or for a book that would help me. I searched in my local library and in the town's bookshop. 

I found the book written by Dr Anne Macintyre entitled 'M.E. chronic fatigue syndrome a practical guide' .  I bought the 1998 edition which I still have to this day even though it's a bit dog eared and I've scribbled all over it! It validated how I was feeling and I could identify with everything she wrote as well as providing me with lots of help. It has been invaluable. Even though I never knew or met Anne Macintyre I will be forever grateful to her. 

Miranda Brewster has made a very useful video explaining the book

  


This is Annie's main documentary on exposing the medical scandal surrounding M.E. 

I think, not just myself, but the whole M.E. community have a lot to thank Dr Anne Macintyre for. 

If you have never read her book or watched these videos I suggest you do so today. I'm sure you will also find them interesting and of help. 

Au revoir
The French Femme 
xxx

TERRIFIED

Bonjour, 

In this blog I want to talk about another emotion that we may experience. The emotion of feeling terrified or scared. 

I've previously written a blog about fear but feeling terrified expresses extreme fear. 

When you're  terrified you can be scared stiff, scared out of your wits, scared to death, very frightened, petrified and alarmed. 

The root word is Latin, terrificare, which means "to frighten."

With a chronic illness like M.E. some of the symptoms can be terrifying. This may include constant extreme pain, paralysis, seizures, unable to breathe, pains in the chest, extreme dizziness, unable to think, to speak or loss of memory.      

We may become terrified that we will end up all alone, with no friends or family to help and support us, abandoned by the medical profession, refused care in our home and what will happen as we become older. 

We may become terrified that we will lose our jobs, be refused benefits, lose our home and security. 

And above all we may be terrified that we may never leave our bed, that we will never get better and only become worse.  

  

Terrified by symptoms

That people can`t see

Who think that I`m faking

And don`t believe me

Terrified when I breathe

By pains in my chest

I feel like I`m dying

Must lay down to rest

Terrified I might fall

With this dizziness

The loss of balance

And some light-headedness

Terrified that I will

Remain paralysed

In my arms or legs

Like I am petrified

Terrified when I can`t

Think or concentrate

I forget so much

Which I also hate

Terrified I`ll be left

Totally alone

No family or friends

To cope on my own

Terrified I may hear

That my benefit

Is going to be stopped

And my life with it 

Terrified I`ll be told

A job I must find

That I`m not really ill

It`s all in my mind

Terrified that I may

Lose my house and home

I`ll have nowhere to live

Lose all that I own

Terrified that I will

Never leave my bed

My life is at an end

And I`ll soon be dead

BUT we can't think like that all the time. I know it's far from easy but we must find strategies to cope with these feelings. 

I'll make a few suggestions and maybe you can add to them. 

1. talk about and share how you feel with others
2. write down how you feel
3. try to concentrate on the present
4. try not to let the fear overwhelm you and take control 
5. take one day at a time
6. the future has not yet happened
7. try some breathing exercises or mediation 

I don't have all the answers but I hope this helps. 

What terrifies you and how do you deal with it? 

I welcome your thoughts. 

Until the next time and another emotion. 

A  bientôt

From the French Femme 

xxx

     

FEELING ANXIOUS

Bonjour, 

In my blog I want to talk about another emotion that I have suffered from since having M.E. and that is linked to other emotions and symptoms. 

Sometimes I feel anxious. It doesn't feel like me. 

I don't believe that I really suffered with anxiety before the onset of M.E. 

I was a confident, outgoing and strong person. 

Yes I had problems - don't we all - but felt able to deal with them. 

However since becoming ill I often feel anxious, especially in the night. 

There is not always an obvious reason. This anxiety has sometimes resulted in a panic attack. 

It appears that anxiety type symptoms are common in M.E. 

In this blog by Cort Johnson asks if the Autonomic Nervous System is to blame.  

"Still a common core of symptoms – feeling tense, trouble concentrating, muscle tension, dizziness, abdominal pain, shortness of breath, etc. – are found in ME/CFS, FM and anxiety. It’s as if the more extreme emotional symptoms have been stripped away leaving a body and mind on edge.  Emotional issues are often present, but at a “sub-clinical” level. They’re not enough to trigger a diagnosis of anxiety but are enough to be aggravating. Plus, similar problems of catastrophizing and hypervigilance are fairly common."

"Anxiety, then, is clearly not always emotional in origin. In diseases with autonomic nervous system issues like POTS (and probably ME/CFS and FM) problems with the autonomic nervous system, sensory integration, blood flow or blood volume can produce anxious or even panic-like states."

I will not reproduce this blog but it's well worth reading. 

The feeling of anxiety can manifest in both physical and emotional ways. 

• chest pains
• feeling breathless
• hyperventilation
• irregular heartbeat
• upset stomach
• headaches 
• clammy hands
• sweating
• a panic attack
• restless
• feeling tense
• trembling
• feeling weak or tired
• unable to concentrate   
• dizziness
• nauseous
• unable to sleep

So what causes anxiety? 

• Often it comes along with a medical problem like M.E.  
• Sometimes it can be a side effect of certain medications. 
• significant worry about treatment and the future
• stress of trying to live with acute symptoms
• stress of having to deal with things such as medical appointments, forms to fill in, phone calls    
• worry and stress over finances 
• worry and stress when claiming benefits
• stressful relationships
• stress of not knowing and uncertainty 
• social isolation
• lack of support
• poor quality of life
• insomnia
• depression
• lack of control
• abuse
• a traumatic event
• change of circumstances

My next question is how can we deal with and manage this anxiety? 

I suggest if you suffer with this symptom that you talk to your doctor. 

Perhaps there is some medication that may help you with your anxiety and your sleep. 

My doctor prescribed a natural supplement that has helped me. 

As far as possible avoid stressful situations and people.

As far as possible eliminate stress in your life.  

Accept that you are anxious but also accept that it may pass. 

Try calming strategies like listening to soothing music or nature sounds. 

Perhaps you may feel able to try some drawing or painting. 

If well enough, watch something that is distracting or amusing. 

If possible practice meditation and some breathing exercises. 

Perhaps writing down your anxiety and worries may help you. 

Perhaps you may want to share how you feel with others and make you feel less alone. 

Above all remember that you are not your anxiety. You are not weak. This is just a part of your illness.    
   

Anxious

I’m feeling very anxious

And I don’t know why

I’m feeling very anxious

And I want to cry

I wake up feeling anxious

Half way through the night

I wake up feeling anxious

I just don’t feel right

I’m feeling very anxious

Keep thinking the worst

I’m feeling very anxious

Like my head will burst

I’m feeling very anxious

So sick and dizzy

I’m feeling very anxious

All hot and sweaty

I’m feeling very anxious

And it’s hard to breathe

I’m feeling very anxious

With pain and fatigue

I often feel so anxious

I can’t concentrate

I often feel anxious

And have a headache

Why am I feeling anxious,

restless and tense?

Why am I feeling anxious?

It doesn’t make sense

  

Why am I feeling anxious?

Could it be M.E.?

Why am I feeling anxious?

This is not like me.

I believe that I've done as much as possible to help reduce this feeling of anxiety and the stress in my life. 

However life often throws up events and problems that cause anxiety and stress. It's impossible to avoid completely. 

At least I know that if I feel anxious I have strategies to help me. 

Do you have any strategies that have helped you?   

I look forward to hearing from you. 

A bientot

From the French Femme

xxx

LONELINESS

Bonjour, 

This blog is another in the series about all the emotions that we go through living with M.E. 

The one comment that I see most often on social media is 'I feel so alone'. 

Being alone and loneliness is forced upon us as we can no longer work, socialise, or leave our homes or even our beds.   

Here are some of the comments that people have written about how they feel. Perhaps you can identify with any or all of them....

• the worst thing about M.E. is feeling so lonely
• M.E. has got to be the loneliest illness in the world 
• I feel so lonely and desperate
• I feel ignored
• I feel lonely and afraid
• I feel lonely and depressed
• I miss talking to people
• I fear being left alone
• people don't understand how lonely this illness can be
• I feel sad, sick and tired of being alone
• living alone means every day is a struggle
• alone at Christmas 
• inhuman loneliness
• I'm a really sociable person and miss seeing people
• I miss 'real' friends to hug
• loneliness is the worst of all tortures
• being lonely is a killer
• I feel like no one in my life understands what life is like having this illness
• lonely is not being alone, it's the feeling that no one cares

Of course some people love being alone. It's true that being alone can have it's benefits. It's also true that you can feel lonely even when you are living with someone or you are surrounded by people. 

I have been in both situations - lonely in a relationship and now as a single person. 

So how can we cope with loneliness? 

We all have our own ways of facing and dealing with this. 

Unlike healthy and well people we can't go out and join a local class or group, volunteer or go out and socialise.  

We have to find other ways to combat loneliness. 

What helps me is connecting with people, especially those who suffer the same as me, on social media websites. It helps me to feel less alone. 

I have a few good friends but talking to them depends on how I feel. 

I also have a cat who helps and comforts me. 

It also helps me to write down how I feel and sometimes share that with others. 

What helps you to cope with loneliness?  

I look forward to hearing from you.  

Love and hugs to you all 
The French Femme 
xxx💓

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


   

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  

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