HOT AND COLD

Bonjour

Well at last we have reached Spring and here today in France it feels like we have skipped Spring and gone straight into Summer! I have difficulties in adjusting to temperature changes and the seasons, especially if sudden and dramatic. Do you?

Sudden changes in temperature are known to bring on a relapse of ME in some cases. I once had a major relapse when there was a sudden and huge change in the weather. In a matter of days it turned from Winter into Summer. My body just couldn't adjust that quickly and I suffered badly for many months afterwards. 


Loss of thermostatic stability is one of the symptoms of M.E. as outlined in both the Canadian Consensus Criteria and the more recent International Consensus Criteria 

'Loss of thermostatic stability - subnormal body temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities; intolerance of extremes of heat and cold'  

 

When I first became ill I felt cold all the time, even in the middle of Summer, and often had cold fingers or toes. At the time I had no idea what was going on. I still have occasions when I become cold all over and it takes ages to warm up. I've been known to go to bed with wearing pyjamas, dressing gown, thick duvet and covers along with a hot water bottle and still feeling cold! Then all of a sudden it's as if someone has flicked on a switch and I become hot all over - in fact just the reverse, too hot. The body is unable to regulate temperature and changes.

Then, to make matters worse, I entered into the menopause and all the night sweats started. I had a period of years when I woke up many nights drowned in sweat even though it was cold in the bedroom. I would start off covered up, wake up hot, throw off all the covers and then within minutes freezing cold again!!!

Bizarrely I even have times when one part of my body feels hot and the other cold. That's so difficult to manage. 

I fare better in a warmer dry climate and don't do very well in the damp and cold. I know some people are totally unable to tolerate either hot or cold. Which do you prefer?
 So how do you cope with this aspect of M.E.?  I have learnt to always have many layers of clothing which I can add or take off. I try to avoid the extreme climate changes. I try to be more aware of what will make me feel worse and avoid situations that will only exacerbate these symptoms. If possible change your location and see if that helps.  

This is the poem I wrote about being hot and cold 

Hot and Cold

My thermostat

Is not working

Out of control

Either too hot

Or very cold!

How can I be

Both hot and cold?

Body confused

Instead chaos

Has taken hold!

Don`t understand

Why I feel hot

When it is cold

Why I feel cold

When it is hot!

Temperature

Always changing

Never the same

One minute cold

And then BOILING!

A sudden sweat

Comes over me

Take off layers

But then I feel

Cold instantly!

Hard to control

And keep stable

What must I do

To make myself

Comfortable?

 

Of course the benefit from sunshine is to capture some vitamin D. So I think I'll just take a walk out in the sunshine.....................

 

A bientot

From the French Femme

xxx

 

 

                   

              

  

 

LIVE LONG AND PROSPER

Bonjour

As a life long Star Trek fan I have to dedicate this blog to Leonard Nimoy who died on 27th February 2015 and who is best known as Spock in the original series of Star Trek. It was a sad day. 

Spock was half human and half Vulcan and was often struggling to keep control of his emotions and to apply logic at all times. I guess at the moment I too am struggling to use my logic and common sense to make the best decisions for my health and to plan for my future. Yet at times I find myself a victim of my emotions and in danger of slipping backwards. Perhaps you face the same dilemma.

What a week it's been. It started well enough with a feel that Spring was in the air, a pocket of energy and a sense that I was at last turning the corner. It was short lived because as usual the post exertional malaise kicked in for a few days.    

At the end of the week I heard the news that Leonard Nimoy had sadly passed away. Not long after that I also heard that the offices that I worked in for over 20 years had been demolished. What next? I felt as if my past life was crumbling away.

Then on Saturday morning I awoke to some good and promising news.

'Distinct changes in the immune systems of patients with ME or chronic fatigue syndrome have been found, say scientists.

Increased levels of immune molecules called cytokines were found in people during the early stages of the disease, a Columbia University study reported.
It said the findings could help improve diagnosis and treatments'

Could this be the breakthrough that we have been all waiting for? There is hope, although this is not the first time we have been down this road. So I wait to see what happens next.

The other news that has been reported on a lot in recent weeks is the IOM report Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: redefining and illness and the proposed change of name to S.E.I.D Systemic Exertion Intolerance Disease. It has resulted in an outpouring of response and some further controversy - especially about the name. You can read about it here.

I've been contemplating how I can write poems in the future about such a ridiculous name. Anyway here's my first poem

 

What’s in a name?  

This chronic illness

Has more than one name

What shall I call it?

Is it all the same?  

The name keeps changing

It once was M.E.

Then came CFS

Now SEID it could be! 

So what’s the best name?

SEID or CFS?

I prefer M.E.

Out of all this mess!!  

 

So this blog is a mixed one with a lot to contemplate.   

All that remains is to leave you with the famous words spoken by Spock 

'Live long and prosper'

 

 

And Chekov says to Kirk

"Course heading, Captain?"

Kirk replies

" Second star to the right .......and straight on till morning"

 

A bientot

From the French Femme xxx

 

I'M NOT AFRAID

Bonjour

Comment ca va?

Don't worry I'm not going to write all this blog in French! However I do seem to be speaking and listening to a lot of French these days.

It's a tough time of year for so many and especially those with a chronic long term illness like M.E. 
I myself have been struggling on many fronts with pain, extreme fatigue and some depression. This is partly as a result of personal difficulties I have been facing but also because winter has taken it's hold with very cold and gloomy days. Spring still seems a long way off.

Whilst I was dealing with my personal problems there was a lot in the media claiming that we are afraid to exercise. Of course there was a backlash against that statement in the M.E. community. At that time I was embroiled in my own difficulties and felt unable to respond. So I'm just now putting together my response in this blog. 

This is a poem I wrote some time ago about my personal reaction when being told that I was too afraid to exercise

You said that I’m afraid 

You said that I`m afraid

To do some exercise

But it`s a choice I`ve made

As I know it`s unwise 

You said that I`m afraid

But you don`t understand

It`s not a world I`ve made

But part of M.E. land 

You said that I should do

A walk most of the days

But it will just lead to

Post exertion malaise 

You said that I`m afraid

And it`s all in my head

More effort should be made

But I could end up dead!

 

 

 I could never be excused of being afraid of exercise. I'm a positive person who before becoming ill loved to walk, swim and play tennis. I had a full and active life. Now I have days when it's hard to get out of bed. I'm not lazy and I'm not afraid. I just know that I have to be careful in what I do and so rest and pace my activities. If I push myself too much I risk PEM (post exertional malaise) or even worse a RELAPSE

'Those physicians and researchers who are familiar with the disease of Myalgic Encephalomyelitis (M.E.) are in agreement that activity or exercise can lead to a severe relapse'.



 

Here's a clip to the IIME 2010 conference where Dr Cheney makes the comment quoted.

    

I have learnt over the years how to live with and cope with my illness. I know what my limits are. I know what will make me worse. I have no choice but to and rest and pace. Of course there are times when adrenalin kicks in if we have to face and deal with the difficulties in life, much as I've had to do in recent months. As a result I've seen a decline in my level of health. I would love to put on my hiking boots and go off for a long walk but I can't. No I'm not afraid. I'm just being sensible and know only too well the consequences.

 

Anyway I'll stop here as even writing a blog has its consequences!

 

A bientot

From the French Femme

xxx  

 

 

 

TIME FOR CHANGE

Bonjour et Bonne Année 

It’s that time of year again when many people make new resolutions and changes in their life. 

It's also a time to look back at the previous year and reflect on all that has happened.  

 2014 was a particularly difficult year for me and I faced many challenges. It began with a lot of pain and I went into a pain clinic for a week. That helped me to develop new strategies and ways of dealing with and coping with pain. Following that some of my problems of pain have diminished.

I faced many difficulties in my marriage and the stress took has taken its toll on my level of health.  So I had to look at my life and make a decision for my health and my morale. It’s a hard and brave decision to take that first step but a necessary one.

People with a chronic and long term illness often have to adapt and make changes in their lives. At the beginning we struggle to accept and come to terms with illness.  Sometimes we have no choice but to accept and make changes in our lives. Of course along with change comes the inevitable grieving. It could be for our former life or for a lost friendship or relationship.  It’s hard to accept that things must change and at first we fight against making those changes. We are in denial.   

Grieving

It`s a bad case of flu
I`m sure I`ll recover
In just a week or two
Then it will be over 

I`ll push through this feeling
There`s nothing wrong with me
I`ll soon start to healing
And feel fine and healthy

I hate feeling like this
What`s happening to me?
I know something`s amiss
I`m running on empty 

I can`t go on the same
But I don`t want to stop
Something will have to change
Otherwise I`ll soon drop 

I refuse to accept
There`s something wrong with me
Many tears I have wept
Frustrated and angry 

Perhaps if I rest more
Or stay in bed all day
I`ll get back as before
And this will go away 

It`s all so frustrating
Despite all that I`ve done
I feel like I`m sinking
And my life has all gone 

I want my old life back
This really is not fair
At work I got the sack
And I can`t go back there 

Now there`s uncertainty
In the future for me
Must face reality
A new life with M.E. 

It`s all so depressing
I`ve lost what once was me
And all that I`m dreaming
 Now taken by M.E. 

I think this is my fate
So trying to accept
And let go of my hate
But it`s a hard concept

I`m coming to terms now
With a new life for me
I`ve no choice anyhow
But to live with M.E.

So here I am now in 2015 reviewing my life. I have already made some changes and plan more for the coming year ahead.  It’s all a bit scary but for the first time I’m doing what’s right for me and my long term health. For the first time I’m saying “No!” and no longer prepared to continue the same way. It’s TIME FOR CHANGE!

Maybe it’s time for you to take a look at your life and your relationships. What can you do to make changes, big or small? I’m not saying it’s easy but you owe it to yourself. We only have one life and even if suffering from a chronic illness like M.E. we should try and make the best of it.  

TIME FOR CHANGE 

Time for change
Let go of
The past 

Time for change
To accept
At last 

Time for change
No longer
Look back 

Time for change
And take a
New track

Time for change
To find a
New me 

Time for change
Chance to be
Happy

Personally I am going through a lot of changes and I have new ideas, plans and projects for 2015.
 So watch this space!



A bientot

From the French Femme xxx

 

 

IT'S GOING TO BE A LONELY CHRISTMAS

Bonjour

Sadly it's going to be a lonely Christmas for me and many other people, especially those with a chronic illness like M.E.

For me it will be the first Christmas on my own BUT it will be less stressful,  easier to manage, quieter and peaceful. I can do as I please and if I want stay in my pyjamas all day!   

Recently  I've made a decision to change my life, to put myself and my health first. It's not been easy and it's hard adjusting to being on my own. Yet it has already opened new doors and inspired me to do different things. One of these is to write my first poem in French after my preferred French singer, Johnny Hallyday, and his latest release Seul

So my poem sums up my situation right now and how I feel 

SEULE 
 

Seule

En tristesse

J’ai pleuré 

Seule

La musique

J’ai écouté  

Seule

Paix et calme

J’ai trouvé 
 

Seule

C’est mieux

Pour ma santé  

Seule

Enfin J’ai

Ma liberté

For those who don't understand the French here's a translation

ALONE

Alone
In sadness
I have cried

Alone
The music
I have listened

Alone
Peace and calm
I have found

Alone
Is better
For my health

Alone
At last I have
My freedom
 

 

Despite all that has happened to me in recent months I don't feel truly alone. This is because I have been overwhelmed by the kindness of so many friends and I have found new friends. My poem expresses how I feel about the kindness I have found.  

 

Kindness

The kindness of others

Who all suffer the same

Provides me with support

And helps to keep me sane! 

When I read your kind words

Tears well up in my eyes

Emotion overwhelms

Taking me by surprise 

Such a little kindness

I find goes a long way

And makes a difference

To a difficult day 

A few kind words and thoughts

I sure appreciate

And I thank you so much

My friends are truly great.

 

So I want to finish this year by thanking all my wonderful friends who have helped and supported me and have never given up on me. I couldn't have done it without you.

All that remains is to say that I feel like this is another chapter in my life and the chance to start over. I wish you all a Merry Christmas and a Happy New Year. 

   I have plenty of resolutions for the new year of 2015. I hope you do too.

Joyeuses fêtes et Bonne Année

A bientot en 2015

from the French Femme xxx

 

 

LOST

Bonjour

My blogs are a bit like buses. You wait for ages for one to come along and then they all seem to come at once!

This is a special blog to coincide with International Day for the Elimination of Violence against Women on 25th November and 16 days of activism.

As someone who has suffered domestic violence and also suffers from chronic illness I want to help raise awareness. I prefer the term domestic abuse because it's not just physical. The psychological and emotional abuse is just as bad and some, like myself, may say it's even worse.

I was pleased to learn that Home Secretary Theresa May is expected to announce new powers which will put psychological abuse on a par with physical violence. 

 This is a promising step forward in the recognition of the damage that this sort of domestic abuse can cause.

Domestic violence and abuse can affect men as well as women but the facts and figures show that women are more at risk. 

If the person is also disabled the abuse may be even worse. 

Disabled women are twice more likely to experience domestic violence than non-disabled women (BCS 1995)

Disabled women are also likely to experience abuse over a longer period of time and to suffer more severe injuries as a result of the violence (BCS 1995)

As a disabled woman I feel that I have experienced abuse longer than if I was well and healthy. It's harder to escape and start over again.

  I have written and dedicated a poem to all those who suffer and have suffered like myself. This poem could apply to someone who has a chronic illness like M.E. or who is a victim of domestic abuse or  even both

  

Lost 

I’ve lost my way

And what was me

You’ve taken my

Identity

You’ve drained all of

My energy

You’ve consumed my

Vitality

You've hurt and caused

Me injury

You’ve denied me

My liberty

You’ve left me in

This poverty

Isolated

And so lonely

Away from friends

And family

You’ve cheated and

Then lied to me

You’ve taken all

Control of me

You’ve poisoned me

Toxically

You’ve sucked the life

All out of me

There’s left only

A shell of me

 

If you are a victim of domestic abuse get help today, talk to someone, learn more and above all don't suffer in silence.

I know it's far from easy. But if I can do it so can you!     

I have lost a lot BUT I'm starting to fight back and to find myself again. My next blog will be about what I've found..... 

A bientot

From the French Femme xxx

STOP MESSING WITH ME!

Bonjour! Comment ca va?

Yes the French Femme is back and fighting. 
I've been absent for a few months while dealing with a few personal problems.
I reached a low point where I wanted to end it all. But somehow I found the strength to carry on. I was helped and supported by some wonderful friends.
So I want to start this blog by thanking those who have stood by me and never gave up on me. 

Well I've got that off my chest and now for the rest of my blog. 

In the last week I read and was very moved by another blog    

I was not alone. 

It has inspired me to write a poem and I've used some of the key words from this blog.

This illness messes up our lives completely and in so many ways .... 

Stop messing with me! 

You’re messing with me

Just fooling around

To make me believe

That I’m M.E. free 

You’re messing with me

Blowing hot or cold

Forever changing

Unpredictably 

You’re messing with me

Give me a good day

Then you take it back

So very quickly 

You’re messing with me

Letting me push through

Until I collapse

And crash severely 

You’re messing with me

In my head and mind

Just when all seems clear

A fog surrounds me 

Stop messing with me

Don’t give me false hope

Don’t make me feel worse

Just make me healthy!

 

 

   
It's the unpredictable nature that messes us about and makes it hard to manage. That also makes it difficult for others to understand.
I myself have had periods when I've been so well that I've been able to do some decorating but then so ill that I could hardly leave my bed. 
So how can we fight this unpredictability? 
Pacing and rest are the two strategies that seem to work the best in managing M.E. and so to avoid post-exertional malaise or a relapse
Even so it's very hard to predict each and every day.
We can still get caught out and tricked into thinking that we are on the path to recovery or feel that we are getting worse.
I just want to get better and I'm sure you feel the same.
I want to stop M.E. messing with me!

A bientot
From the French Femme
xxx