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💓

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


   

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  

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

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

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  

AWARENESS RAISING ALL YEAR

Bonjour, 

I want to talk about a few things in my blog today. 

Firstly, Myalgic Encephalomyelitis is an illness that changes all the time - every year, every month, every week, every day and every minute of that day. 

It's unpredictability and variability means it's hard to cope with and difficult for others to understand and accept. 

I never know how I'll feel when I wake up each day. I don't know what symptoms may come along each day. It can all change very quickly. 

This makes it impossible to plan anything with surety and reliability.  

Some days I may feel relatively better, either physically or cognitively, and may be able to do a little more. However I have to pace and manage any activity so as not to bring on post-exertional malaise or a relapse.    

I also have the problem that assumptions are made by others. They think that just because I can do this today I must be ok. They may think that I'm not really ill, especially as I may look well. They may think that I can repeat the same activity. They may think that I'm recovered. 

Just because

I can do this

Today

Doesn`t mean

M.E. has gone

Away

Just because

I look well and

OK

Doesn`t mean

I really feel

That way

Just because

There is nothing 

You see

Doesn`t mean

That I`m fine and

Healthy

Just because

You don`t accept

M.E.

Doesn`t mean

There`s nothing wrong

With me

Just because

You don`t believe

M.E.

Doesn`t mean

You can treat me

Badly

Just because

You don`t understand

M.E.

Doesn`t mean

That you can treat me

Disrespectfully

Just because

You don`t understand

My illness

Doesn`t mean

That you can cause me
Hurt and distress

Also within the parameters of the illness there are different levels of severity and ability.  

There have been attempts to establish scales of disability as a guide BUT I don't think that we can fit into a little box and stay in that box. 

I think it's quite common to move up and down these levels at any time - even within a day. 

Secondly, today is the first anniversary of the death of Merryn Crofts. She is only the second person in the UK, and the youngest, to have M.E. as recorded official cause of death.  

So it's a terribly sad day for all her family and for the M.E. community. 

"Can people die from M.E.?" is a a frequent question. The answer is "yes in some cases". 

That's why it's important to raise awareness of just how life threatening this illness can be.     

  

Thirdly,  May and especially the 12th May is an international day of awareness. I and many others have made a huge effort to raise awareness and understanding this month at some cost to our level of health. I don't think I've ever seen such a huge wave of awareness raising and it makes me feel encouraged and hope that the tide is turning. 

BUT we have to maintain that wave and keep raising awareness and understanding. I don't want to read of more needless and tragic deaths because of this illness. 

SO join me whenever you are able to continue the fight.    

     

A bientot
The French Femme
xxx