OVERWHELMED

 Bonjour, 

It's been a little while since I last wrote a blog but other events and people have come into my life. 

This blog and my poem is inspired by an event that I experienced some time ago. I've never forgotten it and how I felt at the time. 

All my senses were totally overwhelmed. 

I'll explain a little of how I came to find myself in such a situation.     

Because of my M.E. and my sensitivity, I've chosen to live in a quiet and calm location in France. See the locations effect.

Most people with M.E. are sensitive to some degree to light, noise, odours, chemicals, food, medications and touch. 

Hypersensitivity is a real issue for people with M.E. and forms part of the many symptoms

I had a reason to go back to the UK and perhaps underestimated how I would cope and what effect it would have on me. 

When I was younger and healthy I lived and worked in a busy city. I was accustomed to all that came along with it. It was never a problem. 

However when I returned to that environment I felt totally overwhelmed and unable to cope with the sensory overload. 

I now know that I made the right decision in choosing to live in a better environment. Of course not everyone with M.E. has that opportunity. 

Have you ever been in a similar situation? 

How did you feel? 

Until next time I'll be staying at home! 

À bientôt

from the French Femme

xxx

 

MY MASK

Bonjour, 

In the current health situation with the COVID-19 many of us are having to wear masks. This is for our protection and protection of others. 

Recently a friend of mine bought an African mask. I have been reading a little about the origin of masks and African masks in particular. African masks are very different and have altogether a different use and meaning.  

This started me thinking about my invisible mask that I often wear. You may ask what do I mean by that. Well let's start by looking at the meaning of and the synonyms for a mask. They are to hide, conceal, disguise, cover up, obscure, screen, cloak, camouflage, veil, mantle, blanket or enshroud. 

Unlike those who have recently become ill with the coronavirus, I have been ill and living with M.E. (Myalgic Encepahlomyelitis) for 18 years now. In a way I'm used to wearing a mask. 

Sometimes I smile and pretend that I'm really ok and not ill. I put on my invisible mask. But behind my smile and my invisible mask I am hiding how I really feel and how I suffer. 

I've adapted a photo that I took of my friend's mask to demonstrate what may behind my invisible mask and smile. 

Behind my mask I may hide my suffering 

 Behind my mask you have no idea of the battle I face each and every day 

Behind my mask you have no idea of how many times I've cried 

Behind my mask you have no idea of all that I've lost and how my life has changed with this illness

Behind my mask you can't easily see how I'm fragile inside 

Behind my mask you can't see how I often feel like I'm dying 

Do you have an invisible mask? What do you hide from others? 

Of course it's not always possible to wear that mask, especially when we are so very ill. Then it's clear how we are suffering. 

À bientôt

from the French Femme

xxx

WHY I WRITE POETRY ABOUT M.E. (part two)

Bonjour, 

In my first blog back in November 2013 I wrote a short piece explaining why I started to write poetry. 

I had written some poetry before becoming ill with M.E. (Myalgic Encephalomyelitis)  but I found it was a useful way of developing my skills and at the same time it helped me to survive. 

In this blog I want to review and further explain why I continue to write poetry. 

• my life had to change with M.E. as I could no longer pursue many activities that I once enjoyed. There was a void. I felt that life was no longer worth living. I had to find a sense of purpose, a goal and to fill that void. So writing poetry and blogs has become part of my new life. 

• I need to express how I am feeling, my emotions, my anger, my frustration, my sadness, my loss, my need to grieve. If I hadn't found this outlet for my emotions I have no idea what might have happened. I would most probably have spiralled into a well of depression and self pity. My writing has saved me and helped me with my grieving process - grieving for that other life. 

• I want others to understand how I am feeling and what I am going through

• I hope that others with M.E. can identify with my poetry and so feel less alone in their suffering

• I try to be a voice for others who are unable to express their feelings and their life with M.E.  

• I hope to raise better awareness of life with M.E.

• I hope to increase better understanding of M.E. 

• I try to educate others about M.E. through my own experience  

• Many of my poems are short with a strong and simple message

• I also try to make my blogs simple and easy to read 

• I have also self published books of my poetry with a percentage of all sales going to the charity Invest in ME Research 

• I will continue to do all of the above while there still remains a lack of care and treatment, poor understanding, misinformation, confusion, abuse, and neglect of so many. 

These are my books so far which are available both in paperback and kindle versions on Amazon throughout many countries in the world   

Lastly while I'm still able I will continue to write poetry and blogs. It takes a lot of effort and there is always some payback on my health level BUT it's important to continue. 

Thank you for reading and please feel free to share any of my poems and blogs. 

 À bientôt

from the French Femme

xxx

LOSING A LOVED ONE TO ILLNESS

Bonjour, 

This blog is dedicated to Lotta Wirström (from Sweden).  

During the month of awareness in May 2020 I came across a few very sad stories. 

This one is especially sad and a hard story to write about . This could so easily  have been my story. There are so many similarities. 

BUT I feel it's important to share such stories like this no matter how sad or difficult to read. We need to increase awareness and better understanding of this cruel illness and how it robs people of loved ones. 

I was contacted by her husband Göran Wirström after he read my poems.
I write this with his help and permission to share Lotta's story. 

Before Lotta became ill she worked in a retirement home and a kindergarten. She had one son who was born in 1987 but separated from the father in 1990 and was a single mother for many years.   

In 1996 Lotta became ill with mononucleosis. This may be a predisposing factor for M.E. 

In 1999 Lotta was diagnosed with M.E. (Myalgic Encephalomyeltis). 

Luckily she met a doctor who said I think you have a disease called M.E. so Lotta was sent to a hospital and there was a specialist in pain and also knew about M.E. The doctor's name is Birgitta Evengård a professor of infectious medicine

At first Lotta only had mild M.E. 

In 2005 she met and married Göran Wirström

They had a few precious years when they were able to travel although Lotta had to rest a lot. 

She was an amazing talented and creative woman 

She made lots of drawings

She also made lots of jewellery 

In 2008 she bought a horse and could ride very slowly with the help of her husband. In 2012 it was the last time she rode her horse. Here in this short video she is with her horse and her beautiful granddaughter 

  
Lotta's M.E. became more severe and in 2016 they heard about the Rituximab  treatment in Stavanger Norway. She stopped after the 4th treatment as she felt that she wasn't getting any better. 

By 2019 Lotta developed anxiety and panic attacks and could not sleep. All her symptoms became worse and increased. She could no longer stand light or sounds. She could not watch tv or use her Ipad. She couldn't do anything. 
Her husband told me that the during the last year she was lying in a dark room with earmuffs and a blindfold. Her skin was burning like fire so I couldn't touch her. We couldn't speak to each other. 

By the end of 2019 Lotta tried to commit suicide. Her husband barely dared to leave home for fear that Lotta would harm herself. 

I've written a poem in trying to express how Lotta must have felt. 
Göran told me that it's like Lotta's words 

In January 2020 they applied to a psychiatric ward at Danderyds Hospital in order to get some antidepressant medication for Lotta. She was given an antidepressant but like many with M.E., including myself, Lotta was intolerant to the medication and had terrible side effects. The doctor then talked about electric shock treatment. Lotta was understandably very frightened. Fortunately her husband managed to get her away from that hospital but it affected her badly.  

This is what she wrote on the 13th January 

"HELP! Psych has been forced to take care of me because I didn't want to take a medicine that made me really much worse in my illness. Interpretation that I am just lying in bed like I am seriously depressive and now want to give me electric shocks. Gonna deteriorate my already serious condition"

"The Galen doctor sent me to st:Göran but well there I got a second opinion from a wonderful elderly female doctor and she didn't understand anything when I told her. Took all the powers I have to talk for my cause and a huge adrenaline impact and just to sit up in a chair... Now I dare not think about what happens to my body and brain How much more care destroyed... will come suffer a lot and not be able to write more here... Panicked, but it went well, pooh" 

This was her last entry on Facebook. 

It was not long after that when Lotta finally succeeded in taking her life in a most dreadful way - too dreadful and upsetting to share the details.         

Lotta was only 53. 

She was the first of three M.E. sufferers to take their life in just over a week. 

The total lack of care and understanding in Sweden seems to be behind these suicides. 

Göran says that Lotta fought extremely hard and long for help. But knowledge about M.E. is far too low in Swedish healthcare

Had it been different this might never have happened. 

It's hardly surprising that I'm sitting here in tears as I write this blog but it has to be done. 

Lotta's story must be told and the loss that her husband and her family are now suffering. 

Lotta must have felt that she was beyond help 

The incidence of suicide seems to be higher in people with M.E. and CFS than that of the general population. There are various possible causes for this. 

• lack of support and  resources 
• a lack of understanding
• inadequate treatment or the lack of treatment
• loss of self 
• loss of jobs, homes, relationships
• feeling trapped
• illness induced stress 
• isolation 
• chronic pain
• secondary depression 
• a tortuous life
• loss of hope 
• a poor quality of life 

If you or anyone you know with M.E. or anyone with a chronic illness please seek out help. 

M.E. International has some good resources for help in finding support. 

They also have a link to International suicide hotlines. 

Here is a comprehensive list of suicide crisis lines. 

Contacting the Samaritans is another option. This is one that I've used myself in the past. 

Although I never met you Lotta you were a fellow M.E. warrior and a beautiful person. May you rest in peace and your loss be for nothing. 

À bientôt

from the French Femme

xxx

I PUSHED TOO FAR

Bonjour, 

As many of you know throughout May 2020 I shared one of my poems every day to raise M.E. awareness and better understanding. 

This year I didn't share as widely as last year as it took a serious toll on my level of health. It's a really hard and challenging task to complete.Both last year and this year I nearly gave up but with some wonderful support I carried out my promise. 

Anyway the top five poems for this year were as follows 

1. I pushed too far
2. M.E. Groundhog Day
3. Pretend
4. Turn the clocks back 
5. Sadness 

You can see and share my poems from my Facebook Page, Twitter, Instagram and Pinterest.

Feel free to share any of my poems at any time. Although there is a lot more M.E. awareness raising and sharing in May it can and must continue throughout the year. 

So this is the winning poem and it seemed to resonate with so many people 

This is a common scenario for many of us who become ill with M.E. especially at the debut of the illness. At that stage we most likely have no idea what is wrong with us and diagnosis can be difficult and long. I had to wait a year before I was given a diagnosis and I’ve heard of cases of where people have to wait much longer than that.

Even when I had a diagnosis I had little help or advice apart to do graded exercise.
So I pushed myself despite how I felt and despite the pain. I knew next to nothing about M.E.
In my ignorance I probably pushed myself too much and for too long, hoping that one day I would recover. I also had a mortgage and bills to pay. I was a single mother. I couldn’t afford to stop working. So I did everything to stay in work. Now I wonder at what cost.

How many of you have made the same mistake and pushed yourself too far at the beginning of your illness? How many of you have been forced to continue working? How many feel that you have caused permanent and lasting damage?

In the early stages of the illness we are most likely clueless and with little or next to no help. Maybe now with the internet and social media people are better informed. I had an unsympathetic doctor and only one book for guidance.

I now know in hindsight and from what I have learnt in later years that lots of rest in the early stages of the illness is likely to lead to a better prognosis. If only I had known that before!

In the early stages we are unlikely to know

• That PEM will occur after physical or cognitive exertion
• That prolonged physical and/or cognitive exertion will
   cause a relapse
• That relapse can last weeks, months or years
• A relapse may become severe and permanent
• How to pace
• That we need to rest, rest and rest
• The amount of rest we need

https://www.ncbi.nlm.nih.gov/books/NBK284902/#sec_073

I’ve taken a few quotes from the superb book ‘Shattered, life with M.E.’ by Lynn Michell who echoes what I have experienced and write about in my poems.
https://www.amazon.co.uk/Shattered-M-Dr-Lynn-M…/…/0007155034

“Anecdotal evidence suggests that those who get an early diagnosis and who rest thoroughly in the first months stand a better chance of an early and full recovery.

But people with M.E. do not know that the harder they push, the more likely they are to propel themselves into a more profound version of the illness. Only with the wisdom of hindsight and armed with more information can they say, ‘If only I had known, I would have rested more and I might not be so ill now’.

Others struggle on because they are the breadwinners and fight off the alternative of exchanging financial security for the subsistence living of disability benefits – assuming they are granted them. Others struggle because they have young children or are single parents.

Their determination to carry on was finally thwarted when their symptoms overwhelmed and defeated them. “

It just remains to say a big THANK YOU for all those who have shared my poems and please continue to do so. 

 À bientôt

from the French Femme

xxx

 

M.E. GROUNDHOG DAY (AGAIN)

Bonjour, 

Well here we are again yet another International M.E./CFS & FM Awareness Day on 12^th May.  

I first wrote about this day back in 2014 and entitled it M.E. Groundhog Day. 

For me personally there doesn't feel like that much has changed. And now with the coronavirus I suspect that research into M.E. has gone to the back burner. Perhaps if it was as infectious as Covid 19 and many people died then it would receive the same response and treatment. 

So for those of you who don't know why 12th May is special,or need to be reminded, please read the following explanation behind the day and the date. 

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 12 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.

Mr. Hennessy included ME/CFS (also known as Chronic Fatigue and Immune Dysfunction Syndrome -- CFIDS), Fibromyalgia, Multiple Chemical Sensitivity and Gulf War Syndrome under the CIND umbrella. These illnesses, characterized by cognitive problems, chronic muscle and joint pain, extremely poor stamina, and numerous other symptoms, afflict people around the world in alarming numbers. 

http://www.may12th.org/ 

GroundhogDay is a 1993 American comedy film where Murray plays Phil Connors, an egocentric Pittsburgh TV weatherman who, during a hated assignment covering the annual Groundhog Day event in Punxsutawney, finds himself repeating the same day over and over again. After indulging in hedonism and numerous suicide attempts, he begins to re-examine his life and priorities.

M.E. is much like that where the same day is repeated over and over again and like the film we are forced to re-examine our lives and priorities because of this illness.  

I always try to do something extra to raise awareness and understanding during awareness month in May. This year, as last year, I am sharing a poem of mine every day. You can find all my poems on my facebook page and twitter  as well as Pinterest  and Instagram. Please feel free to share any of my poems or my blogs. 

I always live in hope that something will change and one day this poem will no longer have any meaning. 

Until then I continue to raise awareness and better understanding. 

Thank you

 À bientôt

from the French Femme

xxx

31 DAYS IN MAY 2020

Bonjour, 

May is M.E. awareness month leading up to M.E. awareness week from 11th to 17th May and Tuesday 12th May is ME/CFS and Fibromyalgia International Awareness Day. 

Even though I do some awareness raising all year round I like to do something special or different in May. 

You can see my contribution last year in this blog 

This year I will be posting and sharing a poem every day. 

It was a major undertaking last year and to great detriment to my health. Still I hope it was worth it. 

So this year I will not be sharing around so much and I will be hoping that others will share for me. 

Some of the poems I will be sharing are shortened or amended versions from my books. 

Some of the poems will be new. 

I know last year that I had a mixed reception towards my poems. Some people were upset by some of my poems. Some were pleased that I was prepared to be open and honest about the truth of living with M.E. 

So as last year I will post a warning with some of my more sensitive poems. 

I will continue to raise awareness and understanding. 

The way I can do this is through my poems and my blogs. 

So please help and support me. 

Every day you will be able to find my poems on my Facebook Page 

Thank you

 À bientôt

from the French Femme

xxx

Pandemic v M.E.

Bonjour, 

At the moment I'm reading and hearing a lot about how 'normal' people are coping with this recent confinement because of the coronavirus. There are all these wonderful ideas and proposals to help with confinement and self isolation. Of course for them it's only temporary. 

BUT for those of of us with M.E. or any other long term chronic illnesses the situation is permanent. We live in a whole different form of isolation. 

My friend Shirls Chapman has written a great poem comparing the current pandemic versus M.E. 

Pandemic v M.E.

Welcome to my world

All you normal happy folk

Welcome to my life

No this really isn’t a joke

In the days of this pandemic

Self isolation and doubt

This is how I live my life

Day in and day out

You are raring to go

As you do your morning burn

Your creative brains on fire

As you paint then pose and gurn

You put it all on Instagram

Looking for applause

We get washed and that is it

We can’t even manage clothes

Yay, you made it to week three

Now you’re getting really bored

Your ideas have all dried up

Your workout has been floored

You can’t be bothered getting dressed

All your roots are showing through

Try doing this for twelve years

Can’t imagine it, can you?

Shirls Chapman

I have also written many poems about life with M.E. and in this blog I will share a couple of recent ones. 

As full recovery from M.E. is rare it's like we have been given a life sentence.  

Our confinement and self isolation is so completely different from what many healthy 'normal' people are experiencing right now. 

Healthy 'normal' people can not imagine what it's like to live with M.E. 

Only those who suffer the same can empathise. 

 

So we have no choice but to live with this illness and adapt. 

Please feel free to share my blog and poems - especially to healthy people!! 

À bientôt

from the French Femme

xxx   

CONFINEMENT

Bonjour, 

In the last week I've heard phrases like 'we're at war', 'a new life for the french people' and 'I've lost my freedom'. All because of the coronavirus. Many people around the world are now confined to their homes and practising self isolation. 

I say in response 'welcome to my world'! 

Some people don't know how they will cope for the weeks of confinement and isolation. Try living like that for years!! Those of us with M.E. have had no choice but to adjust and learn to live in isolation. We've had no choice but to change our lives. We've had to accept all the changes that come with illness. Those with severe M.E. are not only confined to their homes but to their beds.  

So now many are having a small taste of what our life is like. 

   
Many years ago I wrote a poem and blog about being isolated. You can read it here 

So not a lot has changed for me in recent weeks. I have lost the little face to face contact that I sometimes had. I have lost my cleaner as I don't want to take the risk. This means I have to cope on my own. Even the small tasks can be exhausting. For me and so many others with M.E. it's a battle just to survive day after day. It takes all my energy and force to just keep going. 

Of course some of us with a long term chronic illness like M.E. become depressed. And I'm sure that those who are newly confined may start to get depressed and not know how to pass the time. 

After many years I've become very resourceful in keeping myself occupied and to fight off depression and boredom. Also some years ago I wrote about being bored and suggestions on how to still have a meaningful and interesting life despite illness. I can no longer pursue all the activities that I used to love but I still have a life and value it. You can read my blog here   

Of course when confined and isolated it's akin to being in jail. Sometimes I yearn to escape and go out into the fresh air and take a lovely long walk.  

In a way I feel angry when someone complains to me. I become angry when they don't realise that I'm more vulnerable as I have a neurological condition and at higher risk. 

There are some excellent blogs and information available for people with M.E. and I will give you some links here in my blog 

M.E. International blogs

UPDATED 3/21/20 People with Myalgic Encephalomyelitis (#pwME) are experienced at dealing with a dysfunctional immune system, which includes social distancing and avoiding viral infections.  We could teach the world a thing or two about how it's done ... if only they'd listen.  We will try to update this blog as additional information comes to light.

#MEAction 

We have created a COVID-19 page on our website where we gathered helpful resources for you. Please bookmark it and check back as wekeep it updated. This is a resource for those with ME and also helpful to other chronic illnesses and disabilities IT SHOULD NOT BE YOUR ONLY RESOURCE. Please follow your local health authority for the most up-to-date information specific to your location. While not your only resource, we do hope it will be one that helps you wade through the information and find what applies to your life as a person with ME or care giver to a person with ME. 

Occupy M.E. 

Safety in isolation 

So stay safe and stay informed. Don't take any risks and ask for help if you need it. 

À bientôt

from the French Femme

xxx   

NORMAL - what does that mean?

Bonjour, 

As I enter my 16th year of being ill I really can't recall what it's like to be 'normal'. 

Sometimes I talk to friends who have a 'normal' life and it reminds me of what I'm missing. 

I have a new normal. 

I wrote this poem a few years ago and it not only applies to me but to others who suffer with this illness M.E. 

At least I had half a life before I became ill. I did get married. I did have a child. I did have an interesting career. I did enjoy lots of activities and a social life. 
BUT for so many especially those who become ill at an early age all these things are denied. All hope seems to be gone. All dreams forsaken. This is so heartbreakingly cruel.    

Normal

What does that mean?

To me that’s only in a dream

To sleep

The whole night through

Five hours is the best I can do

At work

Five days a week

Of that I can no longer speak

Career

This started well

Now it’s all shot and gone to hell

Shopping

A happy event

Perhaps an exhausting hour spent

The pub

A beer or two

But alcohol is now taboo

Visit

My family

Is always difficult for me 

Talking

On phone with friends

With mental fatigue it soon ends

A walk

What a pleasure

Hundred metres is my measure

Bike ride

Down country road

Instead my bike is better sold

Romance

And chance for love

Instead I look to heaven above

Marriage

One of my dreams

Now that is unlikely it seems

Children

A hope one day

What chance now I am forced to say 

Normal

What does that mean?

Hope lost, life wrecked, a broken dream.............!!!

Sometimes I like to pretend that there's nothing wrong with me. I like to pretend that I'm normal and healthy. It doesn't last long of course! 

It's sometimes easier when I meet new people to pretend that I'm 'normal'. 

It's easier than trying to explain what's wrong with me. My illness is not easy to explain, it varies so much and there are so many symptoms.

The only people who can truly understand are those like me with the same or a similar illness.  

Do you also like to pretend you are normal or are you so ill that it's impossible? 

Of course there are times when I feel worse and then it's very apparent that I'm ill. 

Anyway I can always dream and hope that one day I'll have my life back and be 'normal' once again. 

À bientôt

from the French Femme

xxx