Monday, 11 February 2019

FEELING SAD

Bonjour, 

In my last blog I asked if we can be happy with a chronic illness. 

This time I want to explore another emotion which is common with a chronic illness - the emotion of feeling sad.  

Sometimes I may cry when feeling sad. I wrote about this in a previous blog
It's inevitable that we are going to feel sad at times when we live with a chronic illness like M.E. 

Some become depressed. 

I feel sad 

  • when I look back at the past
  • when I'm reminded of my life before becoming ill
  • by the loss of family and friends
  • when I'm unable to accept an invitation to go out
  • when I have to make a cancellation as I feel too ill
  • when I'm too unwell to travel and visit family or friends
  • when I think of how many have suffered   
  • when I think of those who are still suffering
  • when I think of those who have died and who I have lost to this illness
  • that our suffering has been ignored for so long
  • that so many of us have been pushed into treatments that are harmful
  • by how badly so many are still being treated
  • when I read about horrific stories of suffering
  • that so many young people lose the chance of a life because of this illness 
  • and crying from relief when we are believed 
  • and crying when we are heard
  • and crying when at last it feels like we are being recognised

What makes you feel sad? 







À bientôt
from the French Femme

xxx

Friday, 18 January 2019

CAN YOU FEEL HAPPY WITH A CHRONIC ILLNESS?

Bonjour, 

As I write this blog I realise that it's been over 15 years since I first became ill. Through 2002 I gradually deteriorated. By the start of 2003 I completely collapsed and thought my life was over. I went through many emotions. I was frightened and confused. I was angry and frustrated. I became somewhat depressed. I could see my life slipping away. I contemplated suicide. I went into grieving. I thought that I would never be happy again. 

However with time there has come some acceptance and with this new ways to be happy. I have tried to turn the negative into the positive. I've tried to rebuild a life, a life with a chronic illness. 

I believe that how we deal with chronic illness depends on how we deal with other things in life. We are all different and some cope better than others. If we are ill for a long period of time it's not helpful to be always miserable and moaning about our lot. Of course we are bound to have days and moments when we feel down and feel the huge sense of loss. 

One of my friends recently wrote " Loss of independence, job, social life, ability to drive, work, go on holiday, go out on my own again - something I have not done since 2004. How can you be both happy, and ill? I have been asked this. Well, 14+ years would be a bloody long time to spend moaning about it. Oh, I have my moments!" 

And I do as well! There are times when I still feel angry, frustrated and even have a good cry. BUT life is too short. We need to be grateful for life despite having a chronic illness. 

I consider myself, like my friend, a person who is naturally happy, optimistic and positive. Although I totally understand for some people depression comes along with chronic illness and they find it hard to be happy. 

For those who find it difficult to cope here are a few tips
  1. Accept that you need to slow down and know your limits. 
  2. Look after yourself and be selfish. What do you and your body need?
  3. Try to find something good in every day, no matter how small. 
  4. Remember that chronic illness is only one part of your life. You may still be able to enjoy other aspects of your life. 
  5. Try to find a purpose in your life. It will no doubt have changed with chronic illness but you still may find new pleasures and challenges. 
  6. Connect with people who make you happy and with whom you may share your feelings.   
Feeling happy may also depend on your circumstances and feeling that you have love and support from family and friends. Not everyone has that. 

In March 2003 my circumstances unexpectedly changed. I was lucky when I  found love and someone to care for me. For a while this brought some happiness into my life. 

A lot of my happiness and sense of purpose has arisen from my poetry and my writing.   

Happiness has also come from the wonderful friends that I have found in the ME community. Many of these friends I have never met but their kindness and support has helped me enormously. 

Happiness sometimes comes from simple things - 
  • the sun on my face
  • listening to a bird sing
  • listening to a good audiobook 
  • being able to read a book
  • listening to my favourite music
  • finding something that makes me laugh
  • having a shower
  • a good night's sleep
  • a nice cup of tea or coffee
  • a piece of chocolate or a biscuit
  • having a cuddle with my cat
  • a kind word or compliment
  • being able to talk to a friend   
  • helping others


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. 




What makes you happy? 

I look forward to hearing from you. 



À bientôt
from the French Femme
xxx



Tuesday, 8 January 2019

HAPPY NEW YEAR

Bonjour, 

I want to start my first blog of 2019 on a positive note. So I send all best wishes to those suffering with a chronic illness and hope that this year will be a better and healthier one. We need to hold on to hope. 





I had started to write my blog last week but on reflection felt it was all too depressing and too negative. So I have amended it a little. Yet I can't pretend that all has been well. It's been a difficult time for me over the christmas period.   

As you may know my recent blogs have been about the emotions that we often go through with a chronic illness like M.E.

The emotion that I've been experiencing recently is that of feeling miserable. This is as a result of continuous severe pain, exhaustion, poor sleep, loneliness, estranged from some family, other family and friends at a distance, cold and damp weather, dark days and reminders all around me of christmas in happier and healthier times. 

At times like this it's hard to keep fighting, hard to keep hoping, hard to be happy, hard to pretend, hard to keep on living   




Miserable

Miserable with no ending in sight
I no longer want to keep up the fight

Now my life has lost all of its meaning
And with it my hope for plans I`m dreaming

How can I go on yet another day?
If I had faith perhaps then I could pray

Nothing seems to have changed with the years past
And I feel my life is declining fast

Miserable and sorry for myself
As if the world has left me on a shelf

Miserable with no ending in sight
But perhaps tomorrow I`ll feel alright!




I have previously written about pain in another of my blogs ' What is your pain level today?'.  This time my pain was at the back of my head, my shoulders and going down both arms. It's a common and reoccurring pain problem for me. I do suffer from other pain issues but this is by far the worst. Pain is one of the many symptoms of M.E.  



Pain

Pain in my head
Face or eyes
Throat and glands
Enlarged in size 
Pain in my neck
And shoulder
That makes me
Feel much older 
Pain in my ribs
And my thighs
That takes me
By some surprise 
Pain in my wrists
And each hand
Hard to grasp
Or understand 
Pain in my legs
And in my knees
New to me
How to relieve? 
Pain in my feet
And my toes
Even down
To both my soles! 
Pain in my bones
All way through
It`s so hard

What can I do? 




Fortunately the pain has eased after a week of intensive treatment and rest. I'm starting to feel a bit more positive again. 

One of my good M.E. friends has recently written an excellent blog 'Resolution time and appreciation' which reminded me that I should appreciate what I have  and be grateful for the simple things in life; to be thankful that I'm still alive and able to get up out of bed each day; thankful that I can still see and hear; thankful that I have a comfortable home; thankful that I have some wonderful friends; thankful for the love of my cat Florence. 

So tomorrow is another day and it's time to stop feeling sorry for myself - well for the time being at least! 

A bientôt
From the French Femme
xxx

       


Tuesday, 4 December 2018

INVEST IN ME RESEARCH

Bonjour, 

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

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

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

 Explain

How do I explain
My illness and its name?
How can I explain
My suffering and pain?
How can I explain
This feeling in my brain?
How can I explain
That nothing is the same?
How can I explain
Again, again and again? 


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

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

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

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

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

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

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

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

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

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


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

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

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

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






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

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

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

Join me in this fight. 

Merci beaucoup
et au revoir 

The French Femme xxx  

Wednesday, 28 November 2018

SMILER GIRLPANTS & DR ANNE MACINTYRE

Bonjour, 

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

So I want to dedicate this blog to them. 

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

The other loss was Dr Anne Macintyre. 

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

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

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

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

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

Miranda Brewster has made a very useful video explaining the book


  


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



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

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




Au revoir
The French Femme 
xxx

Tuesday, 13 November 2018

TERRIFIED

Bonjour, 

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

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

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

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

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

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

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

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

  


Terrified by symptoms
That people can`t see
Who think that I`m faking
And don`t believe me

Terrified when I breathe
By pains in my chest
I feel like I`m dying
Must lay down to rest

Terrified I might fall
With this dizziness
The loss of balance
And some light-headedness

Terrified that I will
Remain paralysed
In my arms or legs
Like I am petrified

Terrified when I can`t
Think or concentrate
I forget so much
Which I also hate

Terrified I`ll be left
Totally alone
No family or friends
To cope on my own

Terrified I may hear
That my benefit
Is going to be stopped
And my life with it 

Terrified I`ll be told
A job I must find
That I`m not really ill
It`s all in my mind

Terrified that I may
Lose my house and home
I`ll have nowhere to live
Lose all that I own

Terrified that I will
Never leave my bed
My life is at an end
And I`ll soon be dead




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

I'll make a few suggestions and maybe you can add to them. 
  1. talk about and share how you feel with others
  2. write down how you feel
  3. try to concentrate on the present
  4. try not to let the fear overwhelm you and take control 
  5. take one day at a time
  6. the future has not yet happened
  7. try some breathing exercises or mediation 
I don't have all the answers but I hope this helps. 

What terrifies you and how do you deal with it? 

I welcome your thoughts. 

Until the next time and another emotion. 

A  bientôt
From the French Femme 
xxx

     



Wednesday, 24 October 2018

FEELING ANXIOUS

Bonjour, 

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

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


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


I was a confident, outgoing and strong person. 
Yes I had problems - don't we all - but felt able to deal with them. 


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

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

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

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

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

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

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

The feeling of anxiety can manifest in both physical and emotional ways. 
  • chest pains
  • feeling breathless
  • hyperventilation
  • irregular heartbeat
  • upset stomach
  • headaches 
  • clammy hands
  • sweating
  • a panic attack
  • restless
  • feeling tense
  • trembling
  • feeling weak or tired
  • unable to concentrate   
  • dizziness
  • nauseous
  • unable to sleep

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

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

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

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

My doctor prescribed a natural supplement that has helped me. 

As far as possible avoid stressful situations and people.

As far as possible eliminate stress in your life.  

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

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

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

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

If possible practice meditation and some breathing exercises. 

Perhaps writing down your anxiety and worries may help you. 

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

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

Anxious

I’m feeling very anxious
And I don’t know why
I’m feeling very anxious
And I want to cry

I wake up feeling anxious
Half way through the night
I wake up feeling anxious
I just don’t feel right

I’m feeling very anxious
Keep thinking the worst
I’m feeling very anxious
Like my head will burst

I’m feeling very anxious
So sick and dizzy
I’m feeling very anxious
All hot and sweaty

I’m feeling very anxious
And it’s hard to breathe
I’m feeling very anxious
With pain and fatigue

I often feel so anxious
I can’t concentrate
I often feel anxious
And have a headache

Why am I feeling anxious,
restless and tense?
Why am I feeling anxious?
It doesn’t make sense
  
Why am I feeling anxious?
Could it be M.E.?
Why am I feeling anxious?
This is not like me.





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

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

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

Do you have any strategies that have helped you?   

I look forward to hearing from you. 

A bientot
From the French Femme
xxx