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.'

REMINDERS

Bonjour

So here we are again only a couple of weeks away from Christmas. 

For many it's a difficult time. 

Perhaps there are painful memories associated with this time of year. 

Perhaps we are reminded of what Christmas used to be like. 

For people with a chronic illness like M.E. we can no longer participate in all the festive activities like before. 

For many it will mean a Christmas alone. 

There are constant reminders everywhere of Christmas in the past. 

There are so many reminders of what we are missing.

It's hard not to think of happier and healthier times. 

We are reminded of family and friends that are no longer with us. 

Many of us are too ill to join our family and friends. 

I personally have some mixed memories of Christmas throughout my life. A part of me wishes and longs for those day again. But it's not helpful to look back in the past. We have to look at what we have now and make the most of our situation. 

This poem I wrote is not just about Christmas but how we there are reminders around us all of the time. 

Reminders

Reminders

Are all around me

Of a life once mine

Reminders

Unexpectedly

Of another time.

Reminders

Stir up emotions

Take me by surprise

Reminders

Of my past and those

Memories revive.

Reminders

Some that are happy

And will make me smile

Reminders

Sometimes sad and then

I cry for a while.

Reminders

Are all around me

Of my life gone by

Reminders

So hard to avoid,

Even though I try.  

This year I'm going to make some new memories. I'm going to try not to let the reminders of the past spoil this Christmas. 

I hope you are able to do the same. 

So I want to wish you a very Happy Christmas and Joyeux Noel

Au revoir 

From the French Femme

xxx

    

MEET THE AUTHOR

Bonjour, 

Last weekend I participated in an event on facebook to 'MEET THE AUTHOR'. It was kindly organised by the Fibromyalgia Awareness Campaign Australia and I would like to thank them for being able to participate in such an event.   

This is a summary of the questions and answers during the event.  
  

Rosalynde, what inspired you to write a book of poetry ?


Well I've always liked poetry and used to write poems about many things. 
Then after I became ill I started to write poems about M.E. and invisible illness. 

My poems are partly an expression of how I feel but also sharing the feelings of others who like me are going through the same emotions and problems. 

How long have you been writing? And is poetry your only genre?

I have been writing poetry for many years for my own pleasure but in recent years I have concentrated more and more on writing poems about M.E. and invisible illness. 

I also write a blog integrating my poems. 

I would also like to write a book about my life in France but that all depends on my energy and level of health.  

How long have you been afflicted with M.E. and what is your greatest struggle in coping? 

I first became ill in 2002 with what seemed like the worst case of flu ever. However it didn't go away. 

I was eventually diagnosed in 2003. 

Since then I have had varying periods of relapse and remittance but generally I would say that I am moderately disabled. 

I suppose the greatest struggle is getting others to understand and dealing with the unpredictable nature of the illness. 

As like many people with invisible illness I often look well and healthy but don't feel that way. 

So through my poems I aim to increase awareness and understanding.    

What were your symptoms at the time of diagnosis and how was it diagnosed? 

Besides feeling like the worst flu ever, I had no energy, fatigue, swollen glands, sore throat, pains in my legs, dizziness, wanting to sleep all the time but no matter how much I slept I still tired and unrefreshed. 

Lots of tests were done at the time (and since then) to eliminate other conditions and illnesses. Of course they all came back normal! So with my history in the last year and all my symptoms the conclusion was made that I had Chronic Fatigue Syndrome (as they had started to call it).    

It was a relief to have a name for what was happening to me but there was no real help and treatment on offer, apart from the suggestion of graded exercise! 

Things haven't changed much since all those years ago! 

Why choose the initials M.E. instead of by the other names the illness is known by and is this the trend overseas? 

When I was diagnosed in 2003 I was told that the name had changed from M.E. but since then I have learnt an awful lot about the history of the name. So I prefer to go back to the original name that is also classified by WHO 

If you want to learn more about the name and what the difference is between CFS and M.E. take some time to read about the background history. 

And anyway like so many I hate the name CFS as it's so much more than just fatigue!! 

What is your connection to Invest in ME? 

A percentage of the sales of my book go the the charity Invest in ME 

I have a fund raising page

Can you tell us a little about the organisation ?

Invest in ME is a small charity with big aims.  

'Invest in ME (IiME) was set up with the objectives of making a change in how ME is perceived and treated in the media, by health departments and by healthcare professionals. We aim to do this by identifying the three key areas to concentrate our efforts on - funding for biomedical research, education and lobbying. Invest in ME aims to collaborate and coordinate events and activities in these areas in order to provide the focus and funding to allow biomedical research to be carried out.'

I understand that your book is available on Amazon. Is there a kindle version for Australian residents? 

The kindle version is available in many countries throughout the world, including Australia   

Do you have a favourite poem from your book that you would like to share with us? 

That's very hard to choose just one but perhaps 'Acceptance' is pretty important for me and as it's so difficult to accept all the changes that come along with a chronic long term illness. 

Do you think anyone with invisible illness and chronic pain will be able to identify with your book? 

Although I mainly write about M.E. many of my poems can relate to anyone with a chronic and invisible illness. Since publishing my book and writing my blog I have received lots of feedback from others who are suffering the same. I think it helps them to feel less alone. 

If anyone has any further questions for me please feel free to post below this blog and I will do my best to answer them. 

Au revoir
From the French Femme
xxx

FIGHTING THE INVISIBLE

Bonjour, 

How many times have you been told that you look so well? I have lost track of the number of people who have said that to me over the years. 

So why? 

M.E. is considered as an invisible illness since there is often little or nothing that can be seen to indicate that you are ill. Perhaps those who are most likely to discern the differences and understand your illness are those closest to you and who see you every day. 

This week September 28th - October 4th, 2015 is Invisible illness awareness week and M.E. comes under that umbrella. 

In my blog I want to explain why I fight for awareness as an illness advocate.

• firstly because M.E. is, even now, so little and poorly understood by family, friends and the medical profession
• to raise awareness of the neglect and maltreatment of people with this illness, especially those with severe M.E. 
• to improve understanding and raise awareness of what it's like to live with M.E. 
• to help others so that they feel less alone in facing this illness 
• to raise awareness through my poems, my blogs and the use of social media
• to donate a percentage of the sales of my book to the charity Invest in M.E. who do so much for the cause of M.E. in raising awareness and understanding

My illness is called invisible

Because there isn't much you can see

But I have such pain and suffering 

That's always going on inside me

My book is available for purchase on Amazon throughout the world but here are the links to the paperback edition in the UK and to the kindle edition 

I hope you can join me in raising awareness and understanding. Every little helps even if it's just by sharing this blog. 

Thank you 

Au revoir 

From the French femme xxx

BORED

Bonjour

I'm so bored? 

So why bored? 

BORED

As endless days go on and on

BORED

By mindless days with the tv on

BORED

And pointless days I try to fill

BORED

And hopeless days when I feel ill

BORED

When sleepless nights just pass so slow

BORED

By aimless weeks with nought to show

BORED

As endless years go on and on 

When we become ill with M.E. or another chronic and long term illness our lives change. We can no longer go out to work or do all the things that we used to love and enjoy. We have to learn to change and adapt. 

What we can now do depends on the level of our illness, our symptoms and our resources. 

I recall in the early days of becoming ill I spent many hours watching mind numbing day time tv and hoping that this would just be a temporary situation. 
But it wasn't and over the years I've had to find other ways to fill the never ending days. Otherwise I might have gone mad or become very depressed!!  

So here are some of the ways I have found. I'm fully aware that not everyone will be able to take up all or any of these activities, especially for those who are severely ill. 



Audio books

http://www.audible.com/

Free audio books online

http://www.techsupportalert.com/free-books-audio

Nature sounds

http://macaulaylibrary.org/

http://www.calmsound.com/

http://meditationroom.org/free-nature-sounds/

Guided meditation 

http://www.fragrantheart.com/cms/free-audio-meditations

Kindle books and Kindle unlimited

http://www.amazon.com/Kindle-eBooks/b?node=154606011

Colouring

http://www.arttherapycollection.com/

Virtually visit other places

https://www.google.com/maps/streetview/

You tube

https://www.youtube.com/

Jigsaw puzzles real or online

http://www.jigzone.com/

Crosswords real or online

http://www.boatloadpuzzles.com/playcrossword

Free rice.com

http://freerice.com/#/english-vocabulary/1402

Knitting/Crochet

http://www.lionbrand.com/freePatterns.html

http://www.redheart.com/free-patterns

Arts and crafts for adults

http://www.favecrafts.com/Gifts/22-Easy-Craft-Projects-For-Adults

Free online courses

https://www.edx.org/

https://www.coursera.org/

http://www.open.edu/openlearn/free-courses?LKCAMPAIGN=Google_grant_socsci&MEDIA=oltry&gclid=CK-cgbHeh8gCFQxmGwodfKIGtQ

Learning something new

https://medium.com/life-learning/the-37-best-websites-to-learn-something-new-895e2cb0cad4

Write a book

http://www.wikihow.com/Write-a-Book

Write poetry

http://www.wikihow.com/Write-a-Poem

Write a blog

http://www.dummies.com/how-to/content/writing-a-good-blog.html

Listen to music

eg radio, cds, applications online, you tube

Listen to Podcasts

http://www.bbc.co.uk/podcasts

Netflix

https://www.netflix.com/fr-en/

Join Facebook or other online support groups

Of course when you start to investigate the list and choices are endless. This just a small selection.

Maybe you have some other ideas. If so I would love to hear about them.  

So until the next time try not to end up bored! Give some of these ideas a try. 

Au revoir 

From the French Femme xxx

REST AND RELAPSES

Bonjour,

I'm sorry that I haven't been around so much but I've been in a relapse. 
In fact many of my friends seem to be in the same place at the moment. 
I wonder what's going on? 

I had been doing so well but maybe I just pushed myself a bit too far. 

So what is a relapse in M.E. ? 

A relapse is more serious and long term than post-exertional malaise which is an essential feature of M.E. 

Postexertional neuroimmune exhaustion (PENE) is compulsory as a criteria for Myalgic Encephalomyelitis (M.E.) in the latest International Consensus Criteria 

For me a relapse is a deterioration in my level of health that lasts more than a few days. So far this has lasted four weeks!

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

But 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 an infection, possibly a minor one)before recovery from the first`

A relapse can be caused by 

• overactivity
• poor sleep
• a secondary illness
• stress
• stressful relationships
• special events
• sensory overload

Of course the next question for me and anyone else in a relapse is how can we recover from a relapse? 

Dr Elizabeth G. Dowsett said

`Recovery from ME depends, as we shall see, upon a very delicate balance between infection and immunity, so it is as well to be informed of other factors which maybe detrimental to progress including:any upset to the immune system(commonly immunisations and immuno-suppressive drugs such as steroids)hormonal disturbance (such as puberty, pregnancy, childbirth,contraceptive and other hormone therapy unless strictly monitored)exposure to toxic chemicals and drugs (including those in recreational use such as alcohol and tobacco)Other deleterious factors to be avoided if possible, comprise surgical injuries (especially to the head and neck), malnutrition and sudden climatic change.We do not know why relapses can be cyclical (at weekly, monthly or longer intervals) despite the patients’ best efforts to avoid all the above.` 

How can we manage a relapse? 

Dr Elizabeth G. Dowsett said 

Immediately seek extra support to remove all stresses (physical,mental, emotional, intellectual)

Be patient and listen carefully to the signals given by your own body so that you can aim to remain in charge

Maintain good nutrition (by means of supplementary feeds, on prescription, if necessary)

Seek to delegate all tasks except those you love to do or which are absolutely essential, till recovery

Do not ascribe all new symptomsto the relapse; seek a medical opinion if possible as you may have another potentially treatable condition

Do not despair; in surviving this relapse, you will gain confidence about self-management and quicker recovery in the future.

REST is very important and that's total rest. 

Rest

Rest

Rest

And hope to get better

That`s my advice to you

You know it makes sense as

It`s the best thing to do

Rest

Rest

Rest

And hope to feel better

I know it`s hard to do

But it`s the only thing

That will benefit you

Rest

Rest

Rest

Listen to what I say

Your body needs to heal

And have a proper rest

As exhausted you feel 

Rest

Rest

Rest

Let your mind become still

Repose your tired brain

Clear away all your thoughts

As they are only a drain

Rest

Rest

Rest

Stop! It's now time to rest

This is the remedy

When you are in relapse

Towards recovery!

  

Of course that means different things to different people depending on the level illness and the severity of the relapse. 

So I have been doing a lot of resting and very slowly making a way to a recovery. But it's hard and so easy to overdo things again. 

Alongside lots of rest the other strategy is to adopt good pacing 

Hopefully I'll learn something from this latest relapse! 

Do you have any other tips advice on how to deal with a relapse? 

Would love to hear from you. 

A bientot 

Love from the French Femme

xxx

P.S Don't cats just know how to rest and relax!! 

CHILLI ME CHALLENGE

Bonjour

I have been inspired by so many people who have been taking up the Chilli ME Challenge and especially by the video posted today by Mama Chill

It has in turn inspired me to write a poem and encourage others to do the same. 

The chilli is hot

The challenge is now

It's all for M.E.

But do you know how? 

Make a video

And eat a chilli

No matter how hot

It's all for M.E. 

Have your milk ready

To help with the heat

Your mouth is on fire

As it's no mean feat!

Share your video

For many to see

Let's spread the message

It's all for M.E.  

So why are so many taking up this challenge? 

Because we need to do all we can to bring attention to the plight and suffering of so many with M.E. which can be a lifelong illness.

We need to raise awareness and biomedical research funds

One way we can do this is by making hilarious chilli-pepper-eating videos.

Are you ready to take up the CHILLI ME CHALLENGE? 

A bientot 
From the French Femme xxx

I VALUE MY LIFE

Bonjour

So here we are in the middle of Summer and many people are going off on holiday. For people with a chronic and long term illness, like M.E., it's either impossible or extremely difficult. 

Yet I recently planned and took a holiday by the sea. It was hard but I coped with all the demands thrown my way. 

In a minute I'll share with you what I learnt and offer some advice from my experiences.  

But first I'll tell you why I took a holiday. Apart from the obvious reasons and why everyone needs a holiday, I feel that I must go on living despite having M.E. 

I've been suffering for some 12 years now, with relapses and good periods. I have gone through a grieving process for my past life, I've done tests after tests, I've tried lots of different approaches to see if anything improves my level of health and the quality of my life. I've learnt as much as I can about this illness. Now I have to accept that this is my life and continue living my life as best as I can within the confines of my illness.  

Yet deep inside I still feel that I am the same person and value my life all the same

Value

Now I value my life

Though nothing is the same

So much has been stolen 

Yet here I still remain

How I value myself

This person deep inside

Although my life has changed 

The real me is alive

Did I value my life 

Before illness arrived?

I thought I was dying 

But somehow I survived

Now I value my life

It's so precious to me

And I go on living

Despite having M.E.

So how to go on living with M.E.?

I'm not as serious disabled as some but with careful management I have found that I can travel and can go on holiday. I was recently inspired by this blog  

Of course it depends if you have someone to help with travelling and planning a holiday. 

I don't have either so had to plan well in advance. 

Here are my few tips that might help you

1) Look carefully at where you want to stay. 

2) How easy is it to reach by public transport?

3) Do plenty of research beforehand.
4) Make lists and lists of what you need.
5) Pack slowly and don't leave it to the last minute
6) Make a note of all your travel plans i.e. times of buses, trains etc.
7) Consider your limits.How far and how long can you travel in one day?
8) Maybe, like me, half a day is more than enough to travel on public transport
9) Register as a disabled passenger and ask for help at all times.
10) I have a priority card which also comes in very handy.
11) Take with you plenty of fluids and dry snacks like nuts as well have any medications easily at hand. 
12) Look at all your alternatives in case things go wrong e.g. taxi numbers.
13) If you are travelling alone tell others about your plans and have their contact details in case you need help. 
14) Keep with you all information about your illness and any medications that you need. 
15) Rest well before you travel and rest when you get to your destination and of course rest and recover when you return.
16) Above all pace, rest, relax and enjoy yourself.    

Now I know that I can travel and go on holiday. 

My life hasn't finished - yet. 

Of course it has changed and I get some funny looks when I ask for help as a disabled passenger. I suppose they assume that everyone who is disabled needs to use a wheelchair. Still I don't care because I have proof of my disability and I am not afraid to ask for help. 

I hope my blog will help you and inspire you to do the same. 

Bonnes vacances et bon voyage!!

A bientot from the French Femme
xxx       
  

   

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