Tuesday, 28 June 2022

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


Thursday, 12 May 2022

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 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

Friday, 14 January 2022

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




Tuesday, 14 December 2021

MYTHS AND MISCONCEPTIONS ABOUT ME AND M.E.

Bonjour, 

Sorry it's been a while since I last wrote a blog but one horrible dental problem put me into relapse. I had to wait over 6 months before I could have the appropriate treatment and then it took a long time to recover. Those of you with M.E. will know that any second infection can cause a relapse and we are very slow to recover. 

So the first misconception is that I haven't disappeared and I haven't stopped writing poetry. 

Over many years I've written countless poems about M.E. in order to try and dispel the misunderstanding and misconceptions about my illness. 

In this blog I want to explore some of the MYTHS AND MISCONCEPTIONS surrounding M.E. 

The following are some statements made about M.E. and underneath each statement I share with you one or more of my poems to try and dispel that myth or misconception. You will also find a quote and links to further information. 

M.E. is not real - or "all in your head"

“There are now thousands of published studies that show underlying biological abnormalities in patients…It’s not an illness that people can simply imagine and it’s not a psychological illness.”

– Dr. Anthony Komaroff, Harvard University


FACT: ME/CFS has very clear and proven biological (not psychological) traits,

which include the following (as well as dozens of other measurable traits):

We are not lazy

                                                We don't look sick 


There is no blood test for M.E. 



M.E. is caused by depression or anxiety
 


Exercise cures M.E. 



M.E. is just being tired all the time 



M.E. only affects women 



M.E. only affects a certain type of person 



M.E. isn't a serious medical condition


M.E. is a rare condition 



M.E. is difficult to diagnose 



You can exercise your way out of M.E. 





On the web site 'The Hummingbirds Foundation for M.E.' you can find an extensive list of myths about M.E. as written by Jodi Bassett. 

I hope this blog, my poems and links to further information help you in the face of much prejudice, ignorance, disbelief and misunderstanding that surrounds M.E. 

I've done my best to cover some of the main myths and misconceptions about Myalgic Encephalomyelitis. Maybe you can add some more. 

I hope that this helps you in face of what I and you face on an almost daily basis. 

You may indeed face some of this in the upcoming festive season. So stay strong and keep fighting. 

WE ARE ALL M.E. WARRIORS 





A bientot
The French Femme
xxx


Wednesday, 18 August 2021

WHY WE NEED TO KEEP FIGHTING - STILL

 Bonjour, 

I hadn't intended to write another blog so soon after the last one but after hearing the announcement by NICE yesterday I feel highly motivated to respond through my blogs and my poetry. 

This quite rightly has caused much anger and dismay in the M.E. community. For so long so many have been waiting for this update to acknowledge once and for all that GET(graded exercise therapy) and CBT(cognitive behavioural therapy) are not acceptable treatments for M.E. and that if anything they do harm. 

I know it's hard to keep fighting but we can't give in and give up the fight against a small minority who try to bully us into a corner. We have a voice and must and should use it. Of course it's hard when we all suffer on a daily basis and have been doing so for year after year, seemingly with no end. 

BUT we deserve and need better understanding, better care and treatment. 

For so long there has been so much neglect and abuse of those who are chronically ill. 


I have previously written blogs about how I feel :-

Why we need to keep fighting 

Positive thinking 

I pushed too far 

I look back 

You said that I'm afraid

I have shared my story and experiences which you can read in these blogs:-

My story for M.E. awareness week

Meet the author 


Recently I have also told my story in a podcast with the help of Millions Missing Podcast. 

You can listen to my story here 


This is my poem about GET & CBT 


And another poem that is about exercise


These quotes remains as relevant as ever 



Greg Crowhurst for Stonebird has made a very good response in a video on the failure to publish the NICE guideline on ME/CFS. 


There is also a petition which you can sign 'Don't let vested interests perpetuate harmful treatments for ME/CFS'

If you have been harmed by graded exercise do you feel able to share your experience? 

This is the message I have received and how you can share your experience 

Jenny Wilson is looking urgently for testimonies that offer some kind of ‘proof’ that graded exercise therapy has harmed people with ME. Your story might be just the one she needs. Apparently they need approx 50 case stories ready to go, and the stakes couldn’t be higher. If you can give a rough idea of dates and any ‘evidence’ connecting the treatment specifically with your deterioration, along with any evidence of deterioration (eg you had to claim welfare benefits, or you had to drop work hours, or you needed to go into hospital / GP can corroborate etc) then that’s even better, but anything is good. Maybe 100-200 words, or whatever you can manage Please email to mkjennywilson@gmail.com and cc in me at tanyamarlow@hotmail.com
Enter

Tanya

(Needs to have an email address associated with it)

So what can you do? 

  • Share my blog and poems
  • Share the video by Stonebird 
  • Sign the petition 
  • Listen to my testimony on the Millions Missing Podcast 
  • Share my testimony and that of others
  • Consider sharing your testimony also in a podcast
  • Share your testimony regarding your experience of graded exercise
  • write to NICE 

We are all part of a big community and every little bit helps. Do what you feel able and no more. We must keep fighting. This has to end. Please help in any way you can. Thank you 

A bientot
The French Femme
xxx