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

Thursday, 27 September 2018

LONELINESS

Bonjour, 

This blog is another in the series about all the emotions that we go through living with M.E. 

The one comment that I see most often on social media is 'I feel so alone'. 

Being alone and loneliness is forced upon us as we can no longer work, socialise, or leave our homes or even our beds.   

Here are some of the comments that people have written about how they feel. Perhaps you can identify with any or all of them....


  • the worst thing about M.E. is feeling so lonely
  • M.E. has got to be the loneliest illness in the world 
  • I feel so lonely and desperate
  • I feel ignored
  • I feel lonely and afraid
  • I feel lonely and depressed
  • I miss talking to people
  • I fear being left alone
  • people don't understand how lonely this illness can be
  • I feel sad, sick and tired of being alone
  • living alone means every day is a struggle
  • alone at Christmas 
  • inhuman loneliness
  • I'm a really sociable person and miss seeing people
  • I miss 'real' friends to hug
  • loneliness is the worst of all tortures
  • being lonely is a killer
  • I feel like no one in my life understands what life is like having this illness
  • lonely is not being alone, it's the feeling that no one cares

Of course some people love being alone. It's true that being alone can have it's benefits. It's also true that you can feel lonely even when you are living with someone or you are surrounded by people. 

I have been in both situations - lonely in a relationship and now as a single person. 

So how can we cope with loneliness? 

We all have our own ways of facing and dealing with this. 

Unlike healthy and well people we can't go out and join a local class or group, volunteer or go out and socialise.  

We have to find other ways to combat loneliness. 

What helps me is connecting with people, especially those who suffer the same as me, on social media websites. It helps me to feel less alone. 

I have a few good friends but talking to them depends on how I feel. 

I also have a cat who helps and comforts me. 

It also helps me to write down how I feel and sometimes share that with others. 

What helps you to cope with loneliness?  

I look forward to hearing from you.  





Love and hugs to you all 
The French Femme 
xxx💓


Saturday, 1 September 2018

KLARA WILSON

Bonjour, 

I'm writing this blog with a sad heart and many tears. I've lost a friend and an M.E. warrior to the illness M.E. and cancer. 

Some people don't believe that you can have 'real' friends on Facebook.
Klara Wilson was just one of those friends and although I never met her we helped and supported each other. She was part of the M.E. community. Our friendship started back in 2013. So I feel her loss very deeply. 

Klara was a very kind and supportive friend. Others describe her as a brave fighter, with unbelievable spirit, an amazing person, positive, humorous, witty,  an inspiration, so much energy and enthusiasm, passionate about politics and human rights.

Mike Harley interviewed Klara about M.E. in her native Czech Republic six months ago.  He met her sister and mother the day before he ran the Prague marathon in May 2015.     

But above all she has left a great legacy in terms of ME and ME/CFS awareness images she created as part of ME Awareness pics 
She has taught so many with her awareness raising and will continue to do so.  

It's never easy to raise awareness when feeling so ill. It takes a lot of effort and sacrifice to one's health. Klara despite having severe ME contributed a lot to raising awareness. 

When I first decided to put my poems about M.E. into a book I didn't know where to start. Klara and her husband Rob both helped me in those  early days and designed a cover for my book 'My A-Z of M.E.'  




and to illustrate my poem 



I will be forever grateful for the help both Klara and Rob gave me.  

I hope on reading my blog you will share some of these images. 

We need to continue to raise awareness and understanding. 

I don't want more of my dear friends to disappear because of this cruel illness. 

A bientot
The French Femme 
xxx


   

Friday, 24 August 2018

CRAZY

Bonjour, 

In this blog I want to talk about the feelings and emotions that people may go through when first becoming ill with M.E. 

When I first became ill I had no idea what was going wrong with me and neither did my doctor or my family and friends. I felt that no one believed me and of course there was nothing obvious to see. I started to think that I was imagining all this. I thought that it was only temporary - just a case of the flu. I thought that one day I would wake up and realise that it was all a dream. BUT that never happened. My family told me to "Snap out of it and get back to work". They thought that I was just being lazy. So I started to doubt myself and thought that it was all in my head. I thought that I was going crazy.  I pushed myself over and over again to go back to work. I had no other explanation for what was happening to me. Neither did my doctor at the time. I was sent for all sorts of tests and everything came back 'fine and normal'. YET I knew that I was not well and not fine! 

When at last I was given a diagnosis I felt relief and knew then that I was not going crazy. 

However, having a diagnosis doesn't end the disbelief and misunderstanding from others. It's taken decades for some of my family to accept that I really have a chronic illness called M.E.  

So often I look well. 

Sometimes I may be able to push myself to do a little more than my comfortable limits BUT there is always payback. No one sees that.

Some days are better than others. That's when I may be more visible

Some days when I feel very poorly and then I become invisible.   

So often the doctors do repeat tests and still there is nothing to find. 

There is still no one single test to diagnose M.E. and usually it's a case of eliminating other conditions and illnesses along with case history and symptoms. 

I wish and hope that one day there will be one sure test that validates my illness and that of so many others. 

In the meantime I know now that I'm not going crazy! 




Crazy

I suspect I`m going crazy
As no one seems to believe me!
All say that I look so healthy
Since there is nothing they can see.

I feel that I`m going crazy
As I have such a strange feeling.
Some say I`m idle and lazy
But they have no understanding.

I think that maybe I`m crazy
And perhaps it`s all in my head
I used to be very healthy
But now I`m disabled instead.

I wonder if I`ve gone crazy
Or maybe it`s all a bad dream
Then I`ll wake to reality
And things are truly as they seem.

Is it my imagination?
Am I really losing my mind?
There must be some explanation
If only the cause I could find. 

My self doubt is now growing strong
As all say that I look “just fine”
Perhaps I have got this all wrong
For there is no obvious sign.

“Snap out of it” people tell me
If only it was that easy.
I have invisible M.E.
Which is so difficult to see.

This is such a crazy illness
I know I`m not losing my mind
But all the doubt is causing stress
While there is nothing wrong to find!





A bientot
The French Femme
xxx  

Tuesday, 31 July 2018

FEAR

Bonjour, 

In my blog of June I promised to write about another emotion that we may face. 

So this time I want to write about FEAR. 

FEAR can be an unpleasant emotion caused by the threat of danger, pain or harm. We often associate fear with some horror film or dreadful event but it can occur in our daily lives. 

FEAR is an emotion but it can also can manifest itself in a physical way by anxiety or panic attacks

It seems that anxiety symptoms and panic attacks are often experienced by people with M.E. or Fibromyalgia.  

I have suffered from both of these. 

My panic attacks occur in situations of stress and where I feel that I have no  control. They are most unpleasant and intense with increased heart beat, chest pain, unable to breathe which leads to tingling and numbness in my hands, sweating, as well as feeling sick and dizzy. A previous doctor prescribed medication which helped and of course things like deep breathing (especially into a paper bag) with relaxation helps recovery from such an attack. In the long term I have eliminated the sources of stress as far as possible and know when and how to avoid situations that will bring on such an attack. 

More recently I've suffered feelings of anxiety as a result of stress and worry, notably over my claims for benefit and financial problems. These feelings are not as intense as a panic attack and for me mostly occur at night time. Once again I asked my doctor for help to cope with this anxiety and she prescribed a natural supplement which has helped me through a difficult period. Thankfully the source of that anxiety has gone away - for now. 

So let's take a closer look at what is at the root of our FEAR 

It could be any or all of the following
  • fear of not being able to make a living
  • fear of losing everything
  • fear of the unknown
  • fear of change
  • fear of not being understood
  • fear of the pain that may never go away
  • fear of so many symptoms 
  • fear when we can't breathe and 
  • fear we may be having a heart attack  
  • fear of loneliness
  • fear of being alone and unable to cope
  • fear of being abandoned 
  • fear of examinations, treatments and never ending tests
  • fear of hospitals and doctors who disbelieve us
  • fear of not being able to explain
  • fear of being told that you are a fake 
  • fear of being forced into treatment like GET (graded exercise therapy) or CBT (cognitive behaviour therapy)  that only makes us worse
  • fear for the future
  • fear that you are going to die


Fear
That no one can understand me
Hide the truth or I’ll seem crazy
Fear
To pay my doctor a visit
He may say there’s nothing in it!
Fear
Of all the tests I’ll have to make
Results making me look a fake
Fear
I’ll be asked to do CBT
Say I’m depressed or unhappy
Fear
That I’ll be forced to follow GET
And all of their demands be met
Fear
I’ll be left totally alone
With no help, to cope on my own
Fear
Of a future that now looks bleak
What can I do feeling so weak?
Fear
That my life has come to an end
A prayer to God I must now send!




I'm not sure that I suffered like this before becoming ill but I know now that I have to try as far as possible to eliminate triggers that make me feel worse. 

I can't live in perpetual fear. 

I have reduced the sources of stress and worry as far as possible. 

I have increased my practice of meditation. 

I talk about how I'm feeling with others whenever possible or I write them down. 

However in life it's impossible to totally avoid all stress and worry. 

Perhaps the key is in how we manage it. 

What do you think? 

A bientot
The French Femme   
xxx

Thursday, 19 July 2018

I NEED A HOLIDAY

Bonjour, 

It's that time of year when lots of people go on holiday but not me. 

Many of us with M.E. are unable to go on holiday as our resources are limited and we are just too ill. 

It's not just missing out on a holiday in the normal sense but having a break from the life of never ending illness. 

So I thought that I would revisit one of my poems about the need to have a holiday from M.E. 




Holiday

I need a holiday
To walk away from me
To become someone else
And to live normally

I want a holiday
A break from all the pain
I’ve forgotten what’s it’s like
To feel normal again

I need a holiday
To escape from M.E.
A break from this battle
That I must face daily

I want a holiday
A break away from me
A break from this illness
To become M.E. free

I need a holiday
To escape this life now
To rediscover me
If only I knew how


Wouldn't it be wonderful to have even just one day or a weekend when we feel well, normal and able to do all the things that other healthy people are able to do? 

Wouldn't be wonderful if we could go on holiday without suffering payback?

Wouldn't it be wonderful to have our lives back? 

Maybe one day. 

I think we have to live in hope. 

In the meantime I'm going to try and compensate with other small pleasures. 

I do have some gluten free ice- cream in my freezer 😃 




A bientot 
The French Femme 
xxx


Thursday, 21 June 2018

SOMETIMES I FEEL ANGRY

Bonjour, 

Since my last blog I've been trying to recover from the after effects of M.E. awareness month. Maybe some of you have been feeling the same. 

When you become ill with a chronic illness it's normal to go through so many different emotions. One of them I've felt is to be angry. 

You may also feel angry because 

  • your life has changed
  • you can no longer do the things that you once enjoyed
  • you hate feeling sick every single day and every minute of that day
  • you see no ending in sight
  • you feel lost and cheated of the life that could have been yours
  • you are so fed up of the pain and all the multitude of different symptoms
  • you are angry because your dreams and ambitions seem to have ended
  • you feel as if all hope is lost
  • you hate the life that you now have and find it hard to accept
  • you feel sad, you feel mad, you shout, you cry in anger and frustration
  • you hate being ill and disabled
  • you hate your illness and want it all to end

Angry

I hate you
Look what you`ve done!
My life is gone.

I hate you
Making me sick
So very quick

I hate you
Please go away
Why do you stay?

I hate you
You`ve cheated me
Of all that`s me

I hate you
Here all the time
Wrecked life of mine

I hate you
Give me a break
From pain and ache!

I hate you
For ending dreams
No hope it seems

I hate you
And my life now
But accept how?

I hate you
You make me sad
You make me mad!

I hate you
I cry and shout
Just go, get out!

I hate you
You make me cry
And I ask why?

I hate you
Poison in me
Known as M.E.  



I think that it's ok to once in a while release some of the anger and frustration and have a shout or a good cry. 

The danger is if you allow this to consume you and takeover. It's so easy to fall into a depression and feel sorry for oneself. But that won't really help. 

We have to find ways to combat and deal with the feelings that come our way. I personally try to find something that will distract my thoughts or try a little meditation. 

What helps you to deal with your anger? 

In the next blog I hope to be discussing another feeling that we may all experience. 

Until then....  

A bientot
The French Femme