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

QUESTIONS

Bonjour et Bonne Année 

This is my first blog for 2016. Yes I know we are already into February!
Where has the last month gone? 

I want to start this year with questions. 

When I first became ill I had many questions. For a start I did not know what was wrong with me and asked my doctor lots of questions but had no answers. Diagnosis took a long time but when it came I had even more questions!! The answers, however, were very limited. I had to look for the answers myself. 

At the time of my diagnosis I did not have the internet or any other help or support. I searched the answers to my questions in all the books I could find in the library and in my local bookshop. 

One book which I did find that helped me a lot and still helps me is by Doctor Anne Macintyre 'M.E. Chronic Fatigue Syndrome: a practical guide' and is explained very well in this video. 

Now I have access to the internet, many web sites and support groups. 
I have answers to some of my questions but not all. 

Questions still remain. 

No doubt everyone who is newly diagnosed will ask the same questions as me

                       Will I die?                         What is M.E.?

                        Is this it?                           What is to blame?

                        Please don`t lie                  It`s new to me

                        Just fix it!                           Don`t feel the same

Why me?                                                                                           Am I dreaming?

Why now?                                                                                         This can`t be real

M.E.?                                                  QUESTIONS                        I`m still breathing?

But how?                                                                                           Yet dead I feel                                                                           

How long will it last?

                                                                                    Will I recover?

                                                                                    I hope it ends fast

                                                                                    Or my life`s over     

                                     

                                                            How can you help me?

                                                            What is the treatment?

                                                            GET and CBT

                                                            Is all you present

                                   

                                                What else can you tell me?

                                                I need to learn much more

                                                Of this illness M.E.

                                                And what I have in store! 

?

So where to start when newly diagnosed? 

Some of the answers you can find here in advice for people newly diagnosed with M.E. or CFS. 

After fourteen years I don't know how or why I became ill. 

I still remain ill but I have not died.  Although sometimes I feel like I'm dead!

I have found ways to live with this illness but I have not been cured.  

I have tried CBT and GET and know that they do not help. 

I know a lot more about M.E. and try to help others. 

I know many have been ill longer than me and it can be a lifelong chronic illness.

Life is not the same but it goes on all the same. My life is not over yet.

I still have questions and I'm learning all the time. 

I hope this blog of mine helps others, especially those who have been recently diagnosed and feel overwhelmed.    

I hope that one day mine and your questions are all answered. 

Until then I will keep searching. 

A bientot
From the French Femme
xxx
  

  

I WANT TO BELIEVE

Bonjour, 

Don't worry, despite the picture, this blog is not about extraterrestrial life and the 'X' Files! 

Rather it's about wanting to believe and about hope.

It was at this time two years ago that I wrote about HOPE. 

I still cling onto hope and I want to believe that in my lifetime I will learn about the cause of M.E. and receive treatment and even possibly a cure 

I WANT TO 

BELIEVE

THAT ONE DAY

THERE WILL 

AT LAST BE

A CURE

I WANT TO 

BELIEVE 

THAT ONE DAY

MY LIFE 

CAN BE 

AS BEFORE

So in the last week I was pleased and interested to read this headline  

Ian Lipkin: Three to Five Years* to Solve Chronic Fatigue Syndrome (ME/CFS)

Ian Lipkin cited the findings of the work to date

• The suspected pathogens don’t appear to be the problem (the CII is reportedly looking further at herpesviruses.)
• Evidence suggests altered microbiomes (gut flora) are present
• Striking differences in immune expression between shorter and longer duration patients suggest profound immune changes have occurred
• Preliminary evidence suggests that levels “X” and “Y” metabolites and, at least, one immune protein are significantly altered in ME/CFS. (Lipkin embargoed this information pending publication of the paper. One of them is a shocker.)

Then Lipkin made his bold declaration “We’re going to solve this in three to five years”. It came with a significant proviso “provided the resources are made available” but indicated that he believes ME/CFS is a mystery that can be cracked fairly quickly.  

With 2016 approaching this gives me hope for the future. 

I want to believe that the cause of M.E. will be found before I die. 

I want to believe that effective treatment, help and support will become available . 

I want to believe that a cure is not far away.  

I want this suffering to end.  

I want my life back.

What do you want?  

I'm sure you want the same as me. 

All that remains is to wish all of you happiness and good health in 2016. 

A bientot! 

From the French Femme 

xxx

  

P.S.  This is an addition to my blog written a couple of years ago. I still want to believe and hope that things will change. Indeed in recent weeks researchers by Stanford University in the US have identified biomarkers associated with chronic fatigue syndrome severity 

'Researchers at the Stanford University School of Medicine have linked chronic fatigue syndrome to variations in 17 immune-system signaling proteins, or cytokines, whose concentrations in the blood correlate with the disease’s severity.

The findings provide evidence that inflammation is a powerful driver of this mysterious condition, whose underpinnings have eluded researchers for 35 years.'