FEELING GUILTY

Bonjour

Comment ca va? 

I want to do a series of blogs about how are relationships are affected by being ill with M.E.

We change with this illness as we can longer function the same. 
So inevitably our relationships and interactions with others change. 

This first blog is about the changing relationship between partners, husbands and wives. Often there are breakdowns and break-ups. 

Some are fortunate to have all help and support that they need. 

Some become abused and isolated. 

Sometimes the partners are unable to cope with this illness and all the complications that arise.  

It must be hard for a loved one to see how we suffer, change and no longer well enough to share the same things.  

So many of us push ourselves beyond our limits because we don't want to let our partners down. There are so many expectations and demands on us.  
We start to feel guilty 

Feeling Guilty

I’m feeling so guilty

Because I can’t help you

But I don’t have a choice

There’s so little I can do

I’m feeling so guilty

This illness is to blame

It’s not really my fault

I’m no longer the same

I’m feeling so guilty

As I depend on you

So please don’t resent me

There’s so much I can’t do

I’m feeling so guilty

As I rely on you

I feel like a failure

When there’s nothing I do

I’m feeling so guilty

Since I really need you

And I’m letting you down

But don’t know what to do

I’m feeling so guilty

I can’t cope without you

But I appreciate

Everything you do

Do you feel guilty? 

I think in the past I have often pushed myself so as to be with my husband and do things with him or for him. 

The problem is that if you don't say how you feel you end up making yourself worse.

I think you need to be honest and open about how you feel. 

Tell your partner how you appreciate all that he or she does to help and support you. I think communication is important. 

Still I guess it's hard to avoid feeling guilty.

Well on that thought I leave you until the next blog about our relationships

A bientot
From the French Femme 
xxx

 
 

M.E. AWARENESS ALL YEAR ROUND

Bonjour

So what have you done in May to raise awareness? 
I took a bit of a back seat this year, for personal reasons. 
However I know there has been a lot of great awareness raising and initiatives during May. 

I started the month with a blog and I'm going to end it with a blog. 
I just want to say that raising awareness needs to continue all year round and not just in May.
But we need to keep fighting to gain the respect, understanding and treatment that we all need and deserve. 

On a personal note I have recently been made fully aware that, even when you have better days, think you have turned a corner and are able to do more it doesn't mean that you are on the road to recovery. 
M.E. is a remitting and relapsing illness. 
So don't be fooled like me and think you have beaten it. 
It has a way to surprise you and come back with a vengeance. 
It's waiting in the wings just to leap in and re-assume it's role in your life. 

So treat it with respect. Don't do too much when you start to feel better. I know it's easier said than done. We all fall into the same trap at times. Sometimes we have no choice as we have to deal with 'life' and all that comes along. 
For me the two strategies that help are rest and pacing. 

The problem is that it can be a life long illness for some and it's so hard to manage. 
I do believe that there is some hope on the horizon, especially for those young or newly diagnosed. I try to remain optimistic but of course there are days when that's so hard. 

OPTIMISTIC

One day

Some one

Will find

A cure

And I 

Will be 

Healthy 

Once more

So hard

To be 

As years 

Go past

To hope 

That I'll 

Be well 

At last!

  

In the meantime I will continue to raise awareness and understanding through my poetry. I am well on my way to another book of poems about M.E. 

So watch this space! 

I hope you will join me in the continuation to raise awareness and understanding. Every little helps. Why not share this picture so that others can have some idea of what it feels like to have M.E...... 

   

And of course you can share my poems and my blogs. 

Well that's about all for now. 

A bientot

From the French Femme

xxx 

WHAT ARE YOU GOING TO DO IN MAY?

Bonjour

Today is May Day. Here in France it’s called La Fête du Travail or La Fêtedu Muguet. It’s a public holiday. The French greet each other with a sprig or small bouquet of Muguet (Lily of the Valley), a flower that is considered a lucky charm. The tradition dates back to the beginning of the century.

 

Today is also the first day of a month of International awareness for the spectrum of illnesses called Chronic Immunological and Neurological Diseases which includes M.E.

May 12^th is International Awareness Day. You can read more about it and my poem dedicated to that day in my previous blog.

In previous years I have done a lot of awareness raising for The Big Sleep for M.E.

This sort of awareness raising takes its toll on those like myself and others who already face the challenge of living with a long term chronic illness like M.E.

So this year I am taking a step back. I also have personal reasons which need my attention. So sadly I’m unable to contribute at the same level.

Yet I encourage others to take part in awareness raising, even in some small way. Every little effort helps.

Please feel free to use and share any of my poems or blogs which you can find here and on my face book page.

Some of my poems have been wonderfully illustrated by fellow sufferers and convey very powerful messages about what’s it like to live with M.E.

You can also buy my book and share with others to help raise awareness and understanding.

It's available worldwide but here are some of the links on Amazon

In paperback from Amazon UK

Kindle version from Amazon UK

On Amazon Com 

All money I receive from the sales of my book in the month of May I will donate to Invest in ME

So what are you going to do? 

I hope you have a good month of May.

In the french tradition I wish you Bonne Chance

A bientot

From the French Femme

xxxx

 

 

 

 

 

 

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