Tuesday, 2 February 2021

POSITIVE THINKING

Bonjour, 

I'm sorry if this blog is longer than usual but I'm feeling angry, very angry,  disgusted, insulted, offended, disappointed..... I could go on!  

It only takes one misleading, misrepresentative blog and a tv interview about M.E./CFS and long Covid to cause a great deal of anger and upset among the M.E. community. It feels as if all the time we take one step forward only to be set back once again. 

It started with a blog by Professor Paul Garner  which was particularly offensive to me and all people who have been suffering with M.E. for many years and no doubt those who are now very ill with long Covid. 

In his blog he claimed that you can recover from long Covid and M.E./CFS by positive thinking and exercise!! What?!!! 

Then as insult to injury this blog was rapidly followed by an interview on Breakfast BBC tv where both Professor Paul Garner with Dr Clare Gerada told stories of recovery using gradual increases in exercise and that there is no illness where exercise is not beneficial!!! 

Thankfully there has been some very good response to both. 

You can read an excellent reply by David Tuller and many of the comments 

This is also a truly excellent article by a former clinician 

And another excellent blog by Valerie Eliot Smith 

I know this is a lot of reading, especially for those with M.E., but do try to take the time to understand what has happened and what has been said. It's important as it affects us all. 

Then hopefully you will understand why I'm angry and most probably you will feel the same.  

When I read those words 'positive thinking' I immediately thought of the song by Morecambe and Wise 

If only it was that simple to recover from M.E.! 

I'm a fairly positive person. That's helped me to cope with living with M.E. for over 18 years but it's not helped me to recover. You just can't wish it away 


When you've been ill for so long you are prepared to try anything that might lead to an improvement or a cure. 

I know I've certainly tried many different approaches, strategies, medications, as well as reading a lot of advice and information that's available online and in books.

When I first became ill I was advised to follow a graded exercise programme but that only made me feel much worse and brought on a relapse. 

Cognitive Behavioural Therapy was also suggested. While talking to someone helped a little with coping strategies it was far from a cure. 

This poem summarises my experience of GET & CBT 

Sometimes people with M.E. are accused of being afraid to carry out exercise. This is my response in another poem 

I know that the more I push myself the more I become more ill, which leads to post exertional malaise and or even a relapse. 

I know after many, many years of suffering, of trial and error that the two strategies that help me the most are pacing and rest. 


Everyone with M.E. knows that over exertion and pushing oneself will lead to post exertional malaise or relapse. 

You can read more about this in some of my previous blogs. 

I PUSHED TOO FAR , DON'T BE FOOLED , ALIVE BUT NOT LIVING , I'M NOT AFRAID 


If you look at the latest criteria for M.E. you will see that PEM or PENE is essential criteria for M.E. 

The Canadian Consensus Criteria describes PEM as usually lasting 24 hours or longer. The word 'relapse' doesn't appear in the CCC clinical case definition. 

The International Consensus Criteria uses the term Post-Exertional Neuroimmune Exhaustion (or PENE) instead of PEM. It describes PENE as usually lasting 24 hours or longer, but defines PENE broadly so as to include relapses.     

As I write the NICE guideline for "chronic fatigue/myalgic encephalomyelitis (or encephalopathy) or CFS/ME is in the final stages of being updated. The last version was issued in 2007. The draft version of the new guideline was released in November 2020. The final version is due in April 2021

The new draft guideline indicates that Graded Exercise Therapy is being removed as a treatment recommendation and that Cognitive Behavioural Therapy is being downgraded from a treatment aimed at brain retraining to a purely supportive therapy. 

The draft guideline also specifically removes pseudoscientific treatments such as the Lightning Process (LP)  as treatments for CFS/ME. This is the process which Professor Garner apparently used to achieve his recovery from long Covid. 


Recently I read a phrase that took me back to January 2003 when I was first seriously ill. In fact in the current coronavirus pandemic I keep reading so many stories and phrases that resonate with me and my life over the past 18 years

  • I thought that I had my life ahead of me
  • having to rethink much of life
  • the new normal life after Covid
  • facing anxiety
  • dealing with uncertainty
  • finding acceptance
  • First denial, then fear
  • everyday things we miss
  • no longer taking things for granted
  • life beyond Covid 
  • cancelling life events
  • missing family and friends 
  • wanting the life back before Covid
  • pain and solitude
Does any of this sound familiar? It does to me. 

Time will tell if those with long Covid will develop M.E. 

Maybe this will lead to better understanding and help for those in the M.E. community who have suffered and struggled for so long. 

Well that's all for now folks. This blog has taken several days to write and I've tried to cover as much as possible. 

I now need to go and lie down before a relapse sets in and no amount of positive thinking can avoid that!!! 

Au revoir
The French Femme
xxx




Saturday, 2 January 2021

HOPE

Bonjour, 

This is the third time I've attempted to write a blog in the last few months. Third time lucky - I hope! 

Anyway I want to start by wishing you a HAPPY NEW YEAR. 

I know 2020 was a really difficult and challenging year for so many and is perhaps one to be forgotten because of the arrival of the coronavirus. Many people have seen their lives changing, curtailed or limited with confinement and restrictions. It's become a strange new world. 

But for me there have been few changes and adjustments. It's not been a great deal different from previous years. 

When I hear people moaning and complaining about what they've lost and how they feel depressed, I want to say "welcome to my world"! 

  • I've had to adjust my life since becoming ill with M.E. (Myalgic Encephalomyelitis) some 18 years ago
  • My life and my world has had to change
  • I've had to accept so many limitations to my life
  • I've had to accept being confined to my home most of the time. 
  • I've had to accept that I can no longer work
  • I've had to accept that I can no longer go to the cinema
  • I've had to accept that I can no longer go to the theatre
  • I've had to accept that I can no longer enjoy a trip out shopping
  • I've had to accept that I can no longer enjoy any sports
  • I've had to accept that I can't often socialise with friends or family
  • I've had to accept that traveling and going on holiday is not an easy option for me    
  • I've had to live with and accept a life with illness that never, ever goes away
So what's a few more changes to me? 

When you live with a long term chronic illness it's hard to keep on hoping. 

Yet what is there if there isn't any hope left? 

Hope is a word and a theme that crops up a lot in my blogs. 

I'm a fairly positive person and like to keep on hoping. Yet I understand why others give up on hope. 

I want to start 2021 on a positive note so I hope that the coming year is a better one in many ways. 

Meilleurs voeux et Bonne Année 
from the French Femme
xxx



 
 

Thursday, 15 October 2020

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

 

Friday, 21 August 2020

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


Wednesday, 29 July 2020

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 and blogs. 


  • my life had to change with M.E. and 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 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 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. 

My books so far which are available on Amazon throughout many countries in the world and also on kindle  





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


Friday, 26 June 2020

LOSING A LOVED ONE TO ILLNESS

Bonjour, 

I want to dedicate this blog to Lotta Wirström (from Sweden).  


During the month of awareness in May this year 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. 
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. 


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. 

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



Monday, 15 June 2020

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
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