TIME

Bonjour

I want to dedicate my last blog of 2016 to my Uncle Graham who has been battling against poor health for many years now. 

Sadly he is now losing that battle and his days are numbered. 

Yes this is sad but like myself he turned to writing poetry to express his thoughts and feelings and to write about the people in his life. 

I've chosen to share the one he has written about time. 

I think we can all relate to it. 

Time is precious and we should live each day as if it's our last. 

So this christmas whatever you are doing, wherever you are, whoever you are with be grateful and make the most of it.    

A bientot 
From the French Femme
xxx

A poem called time

Time is such a little word

Yet so vital to our lives

We all forever chase it

As bees around their hives

Time is all around us

Although it cannot be seen

It is forever moving forward

Yet we all know where it has been

It constantly controls our pace

And for me the reason’s clear

Most days it is like we are in a race

And to lose fill us with fear

We should take time to contemplate

How to slow this lifelong ride

For I believe it’s never too late

To follow nature’s guide

As we all have allotted time

From the moment we are born

We each must find our way through life

Embracing each new dawn 

Time alas will bring dark days

Along with pain we all must bare

Yet through time we’ll find a way

To lift the burden of despair

Given time we will discover

Time shared will set us free

Be it friendship or a lover

Togetherness is the key

Time is a consultant throughout space

Predating all before

Yet as we as others have our place

As time will show I am sure 

 

PHOTOS

Bonjour,

This blog is going to be a bit more personal but one you can probably relate to if your life has also changed because of chronic lifelong illness. 

They say that you should never look back in the past or too far in the future but live in the moment.

However I have found myself recently looking at old photos of myself and realise how my life has changed.

I once had a job and a career. 

I once used to enjoy many activities outside of work, in the evenings and at the weekends.    

I once used to take part in conferences and meet interesting people.  

I once had an active social life. 

I once used to be able to join in fully with family events and occasions. 

I once used to go on foreign holidays. 

I once used to be able to take long walks and see interesting places. 

I once used to enjoy playing tennis, swimming, cycling and hiking. 

I once felt well and healthy. 

Now all that has gone and my life has changed. 

My life is limited and restricted by this illness M.E. 

So when I look back at photos I'm reminded of what my life used to be like and I feel sad. 

Some may say that people with M.E. don't look ill but I can see the illness and suffering in my eyes when occasionally a photo is taken of me now. 

Well I had better put my photos away. It's not good to look back but it does remind me from time to time of what I've lost. 

Instead I should try to be grateful for what I still have.....

A bientot
From the French Femme xxx

Photos

I`m looking at photos

Of those days from the past

Which were full and active

Sadly they didn't last

When looking at photos

It`s a stranger I see

My life has changed so much

By this illness in me

I look back at photos

And feel upset to see

A different person

One healthy and happy

When I look at photos

I don`t recognise me

An echo of myself

Of how I used to be

If I look at photos

Taken more recently

I look like a shadow

Of a person once me 

I look at my photos

And wish for the old me

That one in the photos

Young, fit and healthy.

THE MEDICAL

Bonjour,

Those people with a long term chronic illness can not have missed the recent statement by the Work and Pensions Secretary Damian Green that it was pointless to re-test recipients of Employment and Support Allowance (ESA) with severe conditions and no prospect of getting better. 

So of course this has given hope to all those with M.E. who have to go through repeated medicals. BUT it's believed that recovery from M.E. is possible so it's unlikely to be included. Back in 2003 I was told that I would recover in 5 years. While I've had some better periods, I have never fully recovered and at times gone into relapse (see my last blog about remitting and relapsing M.E.)     

My thoughts are as follows 

1. What is recovery? 
2. How do we know full recovery possible? 
3. Can we be sure that those who claim to be recovered genuinely had M.E. in the first instance? 
4. There is still not one diagnostic test that can be done for M.E. although there are tests which can be done which are helpful in making a diagnosis
5. The claimed rate of recovery is very small    

If M.E. is not included in the list of severe conditions then we all face never ending stressful and humiliating medical tests. 

The Medical

I walk into the room

You give me a cold stare

I feel anxious, afraid

And collapse in the chair

You ask lots of questions

Which I have to reply

But my brain’s like a fog

And it’s hard not to cry

I’m made to feel guilty

Like I’m here for a crime

That you don’t believe me

And it’s all in my mind

You ask me to stand up

To walk across the floor

Raise my arms in the air

And then question me more

I feel like a monkey

Who’s asked to do a trick.

How is this the right way

To treat the very sick?

At last it’s all over

I stumble out the door

I feel drained, exhausted

 I can’t take any more!

I've been through such a medical which has caused me a great deal of stress, anxiety, worry and a relapse. I would love to go back to work. I never anticipated and wanted a life like this. Yet I find it insulting the way that I and so many people are treated. 

I hope that one day there will be better understanding and acceptance of this illness. I hope that one day we will have a clear diagnostic test for all. I hope one day that these cruel and demeaning medicals will end. I hope one day that we will be given proper care, help and treatment. I hope one day that we will have a chance of recovery and we can get our lives back. 

I hope....

A bientot

from the French Femme

xxx       

  

DON'T BE FOOLED!

Bonjour, 

I have recently been reading about the despair when someone with M.E. goes into a severe relapse after being relatively well for many years. In fact it's possible to feel almost recovered and to have a 'normal' life. Then all of a sudden it changes over night and the person goes back to how they felt when they first became ill. 

So how can this happen? 

It seems that some people, including myself, have a remitting and relapsing form of M.E. and so there are good periods with unexpected relapses. 
It's as if we have been fooled into believing that we are well and have recovered. No wonder so many people have trouble understanding this illness. 

   Fooled

You fooled me

Made me believe

That I was well

You tricked me

An illusion

Just like a spell

You deceived me

Made me behave

All normally

You cheated me

And made me think

I was healthy

You duped me

Gave me false hope

That illness was past

You fooled me

Now in a relapse

It did not last!

So what's going on? 

The late Dr Elizabeth G. Dowsett said 'It is an unexpected deterioration in the condition of a sick person after partial recovery'.  

What causes a relapse? 

The late Dr Elizabeth G. Dowsett said 'The commonest causes of such a reverse in ME appear to be mental and physical over-exertion and stress or secondary illness (usually and infection, possibly a minor one) before recovery from the first.  

So how can we avoid and manage a relapse? 

You can read and learn more here in ME Matters 

What is the difference between a relapse and post-exertional malaise? 

Post-exertional malaise usually happens 24-48 hours after overexertion and there will be a worsening of symptoms. Recovery may be possible after rest and can be relatively short. It seems that a relapse is much more severe and can last weeks, months or even years.  

It can be depressing and disheartening when in a relapse. I have been there a few times. However we have to hold on to hope that things will get better and that this is just temporary. 

I'm not an expert but have learnt from my experiences and that of others. I know that I should never be fooled by any signs of improvement as it can all change very rapidly. Sure there are ways which we can try to avoid a relapse and I have tried to adopt these. It's the unpredictable nature of the illness that makes it difficult to manage. 

So in the meantime DON'T BE FOOLED! 

A bientot

From the French Femme 

xxx    

STOLEN

Bonjour,

Recently I have been touched and moved by so many heartbreaking stories of those with M.E. who have lost so much because of this illness. 

This illness steals our lives, what we once had and what could have been. 

M.E. does not discriminate and can affect anyone at any time in their life. 

M.E. affects women, men and children at all ages, cultures and socio-economic backgrounds.  However, women are more likely to acquire the condition. 

I at least I have lived about half of my life before being struck down by this dreadful illness. 

But I often miss those things that I used to enjoy and can no longer do. 

I wonder what my life would have been like if I had carried on the same track. 

It's so much worse for the young who become ill. They haven't even had a chance to live a life and do the things that they want or dream about. Their freedom and choice is stolen.  

So many lives are stolen 

Stolen

You've stolen my life

What once used to be me

You've stolen my life

To choose and to be free 

You've stolen my life

And what could have been me 

What has been stolen from you? 

A bientot 

From the French Femme

xxx

   

JODI BASSETT

Bonjour, 

I want to dedicate this blog to Jodi Bassett, the creator of Hummingbirds' Foundation for M.E. who has recently died. Her sudden death has left the M.E. community in shock and feeling sad.  

She was a severe M.E. patient from Australia who was also an activist, author and talented artist. 

Jodi felt that her attempts at exercise turned what was a mild to moderate case of M.E. into a severe one that she never recovered from. She said that was one of the main reasons why she created the Hummingbirds web site. 

Amazingly, despite developing severe M.E., it seems she was able to work on M.E. issues for an hour a day from her bed. Through this she built up a huge web site, books Caring for the M.E. Patient , What is M.E.?, Treating M.E. The Basics (1&2) and as well as producing many videos 

Having read lots of comments in recent days I know that she helped many people and that includes myself. Her web site has been an invaluable resource in learning and understanding of this illness M.E. 

I know that not everyone agreed with what she wrote but I guess her conviction and beliefs stemmed from the horrendous and erroneous advice that she was given to undergo exercise therapy that led to the next 15 years of her life spent mostly in bed. Through what happened to her others have learnt how exercise can be permanently damaging.  I too was advised to follow a graded exercise programme but soon realised it was only making me worse and stopped.    

Through my blogs and poetry I also try to help others with understanding and raising awareness of M.E. 

But how can we explain to others if we don't have some understanding of this illness ourselves? Of course we can't explain how we feel to everyone. But it's important to at least be able to do so with close family and friends and with your doctor. 

   

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?

So what resources are there available to help us explain? 

Sadly we have to become our own self experts and this takes many years of suffering and struggle. It can be overwhelming for the newly diagnosed. When I first became ill I didn't have access to a computer and an internet. I relied on a few good books that I managed to find. One of them was 'M.E. A practical guide' by Dr Anne Macintyre. You can read about her and another loss in the M.E. community in another of my blogs here 

Don't expect to visit your doctor and be given lots of information, help and advice, unless you are lucky. A comment I read today on Stacy Hart's superb column for the Watford Observer sums it up well that a robot would probably have more knowledge on M.E. than the medical profession!!!  

Besides Jodi's web site there are many other web sites, books, leaflets, posters, videos and so much more help and advice available if you are prepared to look. I know it's hard when feeling so ill. Plus we can't all be activists like Jodi.  

You owe it to yourself to learn as much as possible. So start today if you haven't already done so. Perhaps like Jodi dedicate an hour a day to reading and learning more about M.E. 

Of course it's terribly sad when one of the M.E. community is lost like Jodi Bassett but we must continue with the fight against ignorance, bad advice and practice and so much misunderstanding that still exists. 

Until next time. 

A bientot 

From the French Femme

xxx

   

CRYING

Bonjour,

Now we come to the end of M.E. Awareness Week I wonder if a difference has been made. Is there any more awareness and understanding of M.E.? 
I certainly hope so. 

It's been overwhelming to read so many sad stories and the continuing struggle against this cruel illness and the inhumanity of it all. 

Life can be hard enough without a chronic illness so it's no wonder that we all find ourselves crying at times. I'm not exempt.  

Crying

I have a cry today

As memories revive

Of life that`s gone away

And how I just survive

My angry tears do fall

It`s really so unfair

Injustice of it all

Right now too hard to bare.

I cry with frustration

When the words elude me

It`s a degradation

Of my ability

I find myself crying

When I try to explain

There`s no understanding

Of how much I`m in pain

Today I start crying

I`m fed up with life now

Why should I keep trying?

What`s the point anyhow? 

I have a cry today

This is no life for me

Sick of feeling this way

Because of my M.E.! 

So how do we continue? How do we live with this chronic illness? 

Perhaps some cope better than others. 

Some find relief in sharing with others who suffer the same. 

I think we all find our own way. 

Unfortunately some don't. 

I don't have any magic solutions. 

I hold on to hope that one day things will change.  

On that note I finish this blog

Au revoir 
from the French Femme xxx 

WORRY

Bonjour

I'm sorry it's been a long time since my last blog but personal changes and events have left me with no time and energy to write. 
Fortunately my life has started to settle down again. 

One thing I have been doing a lot of recently is worrying. We all know that worry doesn't help. Still it's very hard to stop our thoughts. Having a long term and chronic health problem only makes matters worse. 

I worry 

• when I feel so ill with symptoms that are overwhelming and frightening
• when new symptoms develop
• and feel that I'm getting worse
• that I could end up unable to move or worse yet I could die
• that a cure will never be found and the rest of my life will be like this
• when I can't sleep and my mind is racing
• because I feel alone and without help
• about practical things and all the daily problems
• about my finances and being able to cope
• every day it seems!        

Worry

Worry

Because

My body

Feels so weak

My throat is

Hurting and

It`s hard to speak

Worry

Because

My heart is

Beating fast

I can`t breathe

And believe

This is my last

Worry

Because

My head is

Spinning round

I could lose

Balance and

Fall to the ground 

Worry

Because

I can`t sleep

In the night

Lay awake

And worry

Until daylight

Worry

In case

I become

Paralyzed

Unable

To move and

Feel terrified

Worry

Because

My income

Is shrinking

At the same

Time my debts

Are increasing

Worry

Because

My future

Is unsure

My illness

Seems lifelong

And there's no cure!

Do you have the same worries? Are there other things that you worry about? 

How can we live with all these worries? 

I suppose we all have different strategies of dealing with worry. 

I try to distract my thoughts and find something to occupy my mind. 

I try to practice meditation and mindfulness. 

I have a favourite guided meditation web site called Fragrant Heart. There are many others. Find one that suits you.

I find time to write down my problems and worries and deal with them one at a time. 

I take one day at a time.

I share some of my worries with good friends.

I have tried to make my life as simple as possible and free from possible stress factors and relationships. 

Yet there are some things I have no control over so I realise there's no point in worrying. I have to accept that I can't control everything in my life.   

Otherwise I don't have any magical solutions. Life is always full of stress and worry. Sometimes it's how we deal with that life that makes the difference. 

I would love to hear from you if you have any techniques which have helped you. 

In the meantime I will try to come to terms with my worries, live each day as it comes and try to stop worrying about what may never happen! 

Easier said than done!!!    

Au revoir 

From the French Femme xxx