REMINDERS & MEMORIES

 Bonjour, 

Yes it's that time of year again. 

We are approaching Christmas and the New Year. 

For some it can be a happy and joyful time. 

For some it can be a difficult time. 

Some will be spending it alone. 

Some will be facing many challenges. 

Some may not want to or be able to celebrate Christmas and the New Year. 

There maybe painful memories associated with this time of year. 

Perhaps you may fondly look back and are reminded of what this time of year used to be like and long for those days again. 

For those of you with a chronic illness like M.E. (Myalgic Encephalomyelitis) you may be too ill to participate in any festivities.

Perhaps you will be with family or friends who do not understand your illness and its limitations. You may eat or drink too much, especially those things that you normally try to avoid. You may end up becoming more ill or have a relapse in the level of your health. 

I myself will be alone with my cat. I can't help but think of years past and it's just not the same any more. Although, now I at least can please myself and stay in my pyjamas all day if I feel like it. I may have a few nice treats but nothing excessive. I may talk to a friends or family. At least there's no pressure on me to comply with the demands and needs of others. 

Are you going to be with family or friends over the festive season and find it difficult to explain your illness and how you feel? Then maybe you would like a copy of one of my books to help you. 

Perhaps you might like to treat yourself to one of my books. 

I have published books of poetry about M.E. over the last ten years. Some of my more recent books also include poetry on other subjects. 

My books of poetry are written from personal experience of living with M.E. for over 20 years. My books are a must read for those living the challenge of living with a chronic illness as well as M.E. They can also be used to help friends, family or anyone wanting to understand M.E. 

My books of poems are available in paperback and kindle on Amazon throughout the world. 

You can find all my books on my Author's Page as here 

Amazon UK

Amazon France 

As with all my books I donate a percentage of all the sales of my book to the charity Invest in ME Research  and I have a Just Giving Page 

All that remains to be said is I hope that despite everything you will be able to pass a restful and happy time. 

I wish you a Merry Christmas and a Happy New Year 

Au revoir 

from the French Femme 

xxx

REFLECTIONS

 Bonjour, 

I'm sorry that my blogs have been not been frequent this year. Since my last blog I had a bit of a health crisis with a long time for recovery. It made me reflect on my life and my priorities. A book that I've recently read has also contributed to making me reflect on my life and what changes I can make.  

So here I want to review this book and hope that it also helps you to reflect and maybe make some changes. 

It's entitled 'FINDING A NEW NORMAL - living your best life with chronic illness' by Suzan L. Jackson. 

The book is aimed to help you live your best life with chronic illness. Suzan has had ME/CFS, an immune disorder, since 2002 and also has Lyme disease. Both of her sons also became ill with ME/CFS. Her younger son is now fully recovered after 10 years of mild illness. Her elder son still has ME/CFS as well as three tick-borne infections. It's an amazing and positive story of how she has found a new normal for herself and her family. 

On reading the introduction of this book I was immediately amazed that Suzan's life had changed in March 2002 at about the same time that my life also started to change. 

She writes 

'I suddenly felt horrible, with a severe sore throat, aching all over and complete exhaustion. I thought I'd caught the flu, but it never went away' 

This is exactly what happened to me in the Spring of 2002. 

She goes on to say 

' For months my symptoms improved and worsened in a seemingly random pattern' 

This was the same experience for me. I'd recover a little and go back to work and then become worse again and so needing to go back on sick leave. 

Like me Suzan searched for a diagnosis or treatments. Like me she finally found a physician who diagnosed her accurately. 

She writes 

' I had an immune disorder known in the US by the cringe inducing misnomer Chronic Fatigue Syndrome (CFS). Fortunately since then there has been much resistance to the name CFS and a return to M.E. or even ME/CFS' 

In her book Suzan shares her experiences personally as well as that of her family. She shares some valuable advice and help in finding a new normal. She has had to find her own path in living a new life in which she can still be full and happy. With no cure or very little care and treatment we all have to try and do the same as her. This is why I found her book to be a very useful tool in trying to achieve just that. 

Her book deals with emotional coping, daily life, relationships and improving your life. It's full of interesting and helpful tips. Some of these I have already adopted or tried for myself. 

Her book has made me reflect further on my own personal life. She discusses acceptance and hope and how keeping a balance between them is an ongoing goal. I believe that's the case for me and these two words often crop up in my poems and my blogs. 

I've written a poem about acceptance and a blog about turning the negative into the positive . This is much the same as Suzan expresses in her book. 

Acceptance

To say “this illness I accept”

Is such a very hard concept

To accept my life has to change

To accept it can’t stay the same

To accept how I must now live

To try not to be negative

To accept my limitations

To lower my expectations

To accept I need to take care

To accept energy is rare

To accept I need to have rest

To pace myself and do what’s best

To accept new ways of coping

To find better understanding

To not be demanding on me

To reject those feelings guilty

To accept help on a bad day

To be honest in what I say

To accept I’ll have some bad days

And to feel denial and rage

To stop fighting against my fate

To stop my anger and my hate

To again find myself grieving

To mourn that life I’m now missing

To accept does not mean defeat

To know this illness I will beat

To accept is not giving in 

But hope one day this fight I’ll win

To accept part goes to M.E.

To know it can’t take the real me!

I wish I could say “I accept”

But it is such a hard concept  

I further explored this area in another blog 'Can you feel happy with a chronic illness?' 

Happy

I used to be happy

Look forward to each day

Then M.E. came along

And took it all away!

My happiness was gone

Replaced by a grieving

Anger and frustration

And numb kind of feeling.

I thought life had ended

And chance for happiness

With all my days now filled

By this chronic illness

Yet slowly there has been

Acceptance within me

Adjustment of my life

New ways to be happy. 

Of course positive thinking is not always easy and unhelpfully can be claimed as a road to recovery! No amount of positive thinking is going to cure me!!!  

Suzan asks in her book if she should give up all hope of recovery. It's hard to keep on hoping, especially it seems as time goes by and nothing seems much to change. I've also written about 'Hope' and expressed feelings of hope in my poem

Hope

To have a better day

The pain to go away 

Hope

This fatigue will soon end

And my body can mend 

Hope

To find energy

Then start recovery 

Hope

To improve my pacing

Against all I’m facing 

Hope

I find new ways to cope

Which come within my scope 

Hope

To increase more awareness

So disbelief is less 

Hope

That I can work again

And all’s not lost in vain 

Hope

To better understand

This dreadful M.E. land 

Hope

For a future healthy

And at last M.E. free!

In another blog I write 'Holding on to hope and fighting to survive' and more recently I wrote again about 'Hope' 

Personally I try to hold on to hope and I'm generally a positive person. However, as I get older and the years go by I wonder if in my lifetime a cure will be finally found. In the meantime we all have to learn how to live with this illness, including me. That's why I feel that this book by Suzan is a very useful tool in doing just that and I fully recommend it. 

Unlike Suzan, I live alone and that also provides certain challenges. It can be a lonely path and recently Freddie sings 'Face it alone' which resonates with me. 

 

We are all forced to accept and carry on living despite having a chronic illness. We still have a life so we should try to find a new normal. I know that's not easy but we owe it to ourselves - don't we?  

A bientot
The French Femme
xxx

HIGHER MAINTENANCE

 Bonjour, 

I'm going to write a few blogs reviewing books written about living with M.E. (Myalgic Encephalomyelitis). These books have impressed me and influenced my thinking about how I live with this illness. 

The first in this series is a book entitled 

'HIGHER MAINTENANCE' by Marianne Granger. 

This is what I read on the back cover of the book which intrigued me 

' Author Marianne Granger suddenly found herself incapacitated at the age of 46. Devastated and with no cure for her illness in sight, she recounts how she went from victim to empowered as she learned to tame her "dragon" by mastering her emotions, her ego. Follow her journey to a fresh perspective on a life that can bring joy and serenity. Whether you or someone you love is struggling with chronic illness, you will find that raising awareness, forgiving and letting go are just a few of the liberating steps on the road to wellness. This is the path of Higher Maintenance.' 

The first thing that struck me on receiving and reading my copy of this book was that it mirrored my story and journey with M.E. 

I've underlined, ringed and starred many key words and phrases that resonate with me. There are so many that it would be impossible to share them all in this blog. However, I'll share some of the key ones with you. 

Marianne was about the same age as me when she became ill and at about the same time. 

She writes 'One morning I woke up to find that I could not get out of bed. I was weak as a kitten and my throat was very sore' 

On reading her book I discovered many of her experiences were similar to mine 

• she thought that she was sick with the flu 
• she thought that she was dying 
• she pushed herself to go back to work too soon 
• she lost everything 
• she was told that she had depression 
• she became isolated 
• she became increasingly sensitive to so many things around her 
• she spent a decade of online research 
• she searched for tools to and ways to manage her illness 
• it became increasingly clear that her life would never be the same 

She likens her illness to a dragon and she writes  

'I had to welcome the dragon into my life because, perhaps he was there to teach me something' 

She found online communities and resources to get answers. She joined a support group and then someone who referred her to an endocrinologist who had taken a special interest in ME/CFS and a lawyer who specialised in Fibromyalgia and ME/CFS disability cases. Like me she went through a battery of tests to exclude the possibility of other illness before concluding that she did in fact suffer from CFS. She was told that about 3% recover from this illness but that there was no cure and too little research. This was in 2005. She also eventually got her disability pension. 

She writes 'During that time of uncertainty, I had to find ways of nurturing myself. Once in a while I stopped at a nearby florist and bought myself one flower that I would enjoy for a whole week. On Saturday nights, I set a nice table, lit a candle and sat down with a cheap wine as I dined, listening to my favourite standards. I didn't feel alone or sad. I felt nurtured. I could do this for myself because I was worth it' 

'These were my first steps on the path of Higher Maintenance'

She writes about her inner strength, her loneliness, her grieving, her test of faith, the need to ask for help, becoming selfish to survive, learning how to stop feeling sorry for oneself, learning to set boundaries, learning humility and humour, listening to her body, mind and soul and learning how to accept her illness.

 

She writes about how we can get back control over our life, our health and happiness by various strategies. She writes about tools that can help us reach acceptance and how to live with a chronic illness. 

This book is about her personal story, her approaches to higher maintenance, how she manages her illness and what tools she uses to help her. It's full of useful advice and reflections. 

It's a positive and inspiring book. I recommend this book to anyone suffering with a chronic illness. I'm sure it will help you like it has helped me. 

A bientot
The French Femme
xxx

30TH ANNIVERSARY OF INTERNATIONAL MAY 12TH AWARENESS DAY

Bonjour, 

This year, 2022, marks the 30th International May 12th Awareness Day. 

The idea originated with Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases). 

Mr. Hennessy was based in the US but understood that it needed to be an International event. He designated May 12 as the International Awareness Day for the spectrum of illnesses he called Chronic Immunological and Neurological Diseases (CIND). 

May 12th was chosen as it coincided with the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale became chronically ill in her mid-thirties with a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)-like illness. She was often bedridden for the last 50 years of her life. Despite suffering from a debilitating illness, she managed to found the world’s first School of Nursing. 

Each May I try to raise better awareness and understanding of M.E. through my poetry and blogs. 

At the same time I aim to raise funds for the charity Invest in ME Research. 

Here's a look back at my poems and blogs for May awareness. 

In 2014 I wrote about M.E. Groundhog Day 

In 2015 I asked What are you going to do in May? 

In 2017 May 2017-Awareness Month 

In 2018 My story for M.E. Awareness Week 

In 2019 31 Days in May 

In 2020 M.E. Groundhog Day (again) 

In 2021 More of life, love and loss 

This year I'm pleased to announce the publication of a book of short poems for May awareness. 

It's entitled 'ANOTHER 31 DAYS IN MAY'. 

This book is a selection of 31 short poems to raise better awareness and understanding as well as to raise funds for the charity Invest in ME Research.
These poems have been written from my own personal feelings and experience of living with M.E. for over 20 years.
They also echo the thoughts and feelings of so many others who suffer like myself.
My poems aim to portray the harsh reality of living with a long term chronic illness.

It's available in paperback and kindle edition throughout many countries. 

Here is the link for Amazon UK 

I've set up a Just Giving Page and all proceeds from the sales of my book during May I will donate to Invest in ME Research 

After reviewing all my awareness raising that I've done for May since 2014, I wonder how much longer I will continue to do so year after year? 

Am I making a difference? 

I also ask if every year my awareness raising is preaching to the already converted? 

It seems to me that nothing much really changes. The never ending suffering, poor understanding, ignorance, neglect, abuse, lack of support, lack of help, lack of funding and inadequate research continues. 

Where will we be in another 30 years? 

Will the 60th anniversary of International M.E. May 12th Awareness Day be unnecessary? 

Will the cause or causes of M.E. be found? 

Will real research produce treatment and a cure for those of us with M.E.? 

Will there be proper recognition and understanding of this illness? 

I certainly hope so.

Although it may be too late for me and many others who have lost so many years to this illness - some a lifetime. You can't get that back. 

Please support me and Invest in ME Research. 

Thank you. 

A bientot 

The French Femme 

xxx

MY 20TH M.E. ANNIVERSARY

Bonjour, 

As this is my first blog for 2022 I want to wish you all a HAPPY NEW YEAR. 

It will soon be 20 years since I first started to become ill with M.E. (Myalgic Encephalomyelitis). 

Many people with M.E. can recall the time when they first became ill, sometimes even the exact day. For me it was in the Spring of 2002. Like others I'm calling it my M.E. anniversary. 

In this blog I want to look back and share with you my journey, some of my suffering and loss that I've undergone in 20 years. I will be referring to my previous blogs and illustrating with some of the many poems that I've written. 

First of all you can look back to HOW IT ALL BEGAN in my blog 'My story for M.E. Awareness week' 

20 years ago I was facing much DISBELIEF. When I first started to become unwell I had no idea what was wrong with me. During 2002 and 2003 I desperately fought to stay in unemployment which caused me much stress and worry. During that time I faced much disbelief from my doctor, my family and some friends. I suppose I even faced doubt myself and wondered if I was imagining things or going crazy. Throughout 20 years of being ill I've faced a lot of disbelief, ignorance and lack of understanding. It still continues to this day. 

Over 20 years I've undergone so many MEDICAL TESTS AND EXAMINATIONS. Right from the very beginning I faced a barrage of questions, interrogation, never ending examinations and tests. I've lost count of how many blood tests that I've done which usually came back as showing nothing serious, apart from once a low vitamin D level. I've made countless visits to the doctors and hospitals, both in the UK and in France where I've been prodded, poked and harassed. I've suffered the ordeal of a colonoscopy, an endoscopy and a full hysterectomy. I've been psycho-analysed to see if I'm of sane mind. I've even spent a week in a pain clinic where I was totally disbelieved and forced to undergo physical exercise which put me into a relapse. You can read about one of my medicals in this blog 'The Medical' written in October 2016

Over 20 years I've tried DIFFERENT MEDICATIONS. Twice I was prescribed anti depressants, despite declaring that I was definitely not depressed. I couldn't tolerate the medications and stopped them very rapidly. Different doctors have proposed medications but after two bad experiences I've refused any more. Like many others with M.E. I'm sensitive to most medications.   

Over 20 years I've tried many different SUPPLEMENTS,VITAMINS AND MINERALS to see if they would make a difference. Perhaps the best is vitamin C and vitamin D but the rest seem to have made little or no difference apart from causing a hole in my pocket!! 

Over 20 years I think that I've read about or tried many different ALTERNATIVE TREATMENTS &  DIFFERENT THERAPIES. This includes Graded Exercise Therapy, Cognitive Behavioural Therapy, Yoga, meditation, Tai Chi, massage, visited a 'toucher' or 'healer', Emotional Freedom Technique, Lightning Therapy, treatment with electrodes, heat therapy with pads and cushions - the list goes on! Some have helped a little and others downright dangerous. 

Throughout 20 years I've suffered SO MANY SYMPTOMS. There are too many to list here but you can read about them in my previous blog 'So many symptoms' . 

Over 20 years the one symptom that is here with me every single day is PAIN. I don't think there is one part of my body where I haven't suffered pain at one time or another. 

Over 20 years I've become increasingly SENSITIVE AND INTOLERANT to so many things. You can read more about it in my blog 'So sensitive'  

In 20 years I've suffered many RELAPSES and P.E.M. (post exertional malaise) is a defining part of my illness and my life. I've written a couple of blogs about this 'Rest and relapses' in August 2015 and again in January 2020 'Relapse' 

In 20 years I've seen so much LOSS because of my illness. I've lost my job and career, my house and my home, my security, my social life, my many pleasures and hobbies. I've lost hope. I've lost my life as it used to be. Here is my previous blog about 'Loss' 

During 20 years I've had some moments of HOPE during periods of a slightly improved level of health. I've wondered if at last I was on the road to recovery.  However, I'm just fooled and the illness comes back with a vengeance. You can read about this in my blog of September 2016 'Don't be fooled'  It's a false sense of hope. This illness is relentless and full recovery is extremely rare. 

During 20 years I've gone through a whole range of EMOTIONS. You can read all about these emotions in my blog 'So many emotions' or 'Frustrated' or 'Sometimes I feel angry'

In 20 years I've had to face A NEVER ENDING CONSTANT BATTLE FOR BENEFITS to prove that I'm really ill and not faking it. I've had to prove myself and my illness over and over again. I've filled in countless pages and forms in English and French in an attempt to explain and prove that I'm genuinely ill and unable to work. It has caused me enormous stress and anguish.  

Over 20 years I've wanted to GIVE UP THE FIGHT. It's been a constant battle and struggle mostly on my own with little help or support. It's pushed me to the edge and to the point of taking my life. So many do give up and suicide is seen as the only way out. This has happened to some of my dear friends. You can read the story of Lotta in my blog 'Losing a loved one to illness'. 

In 20 years I've had to reach some ACCEPTANCE of my illness and that my life can not go back to the way it was. I've had to find a new way of living, a new life and new interests. Life goes on even if you feel like you are dying at times. Perhaps I've been luckier than some as I had a chance to start over in a new country with a new husband. At first it helped me but soon became with fraught with problems and difficulties. I found that in France there was even less understanding and knowledge of my illness than the UK. I did eventually find a doctor who had some understanding and he helped me to review all my health issues. You can read my blog 'Turning the negative into the positive' 

Over 20 years I've had to LEARN AND UNDERSTAND about this illness myself. At first it was difficult as I didn't have access to a computer and social media. I searched through the local library and bookshops. My doctors knew next to nothing. Their advice, help and treatment was very limited. It has become easier over the years with so much more information available on the internet. I suppose I've become my own self expert. When I registered with my last doctor it was me who gave her information about M.E.

In more recent years I've been writing MY BLOG AND POEMS about M.E. This has helped me and given me sense of purpose whilst at the same time hopefully helping others who suffer the same as myself. You can read about why I write poetry in the following blogs 'Why write poetry about M.E.' 'Why I write about poetry (part two)' 'Meet the author'

Over the 20 years I've found NEW FRIENDS in the M.E. community. There is wonderful support, help and friendship. 

Next month I will be reaching retirement age. I never imagined that my life would be like this. I never imagined that I would be ill for one third of my life. I thought that I would recover but I have never done so. This illness is here with me every single day. The only small compensation on arriving at retirement age is that I will no longer have to fight for recognition as disabled and the right to disability benefits. I will no longer be under that constant pressure to prove that I'm really sick and unable to work. The down side is that health deteriorates naturally with age so I'm never going to go back to the way I was over 20 years ago. 

I'm a survivor and a M.E. WARRIOR. We are all M.E. warriors. 

On my birthday I may have a toast with something sparkling to celebrate reaching retirement but it's coupled with some sadness. And I'm wondering if I'll survive another 20 years!!!  

A bientot
The French Femme
xxx