Saturday, 25 January 2014

IT`S ALL IN YOUR HEAD, YOU`RE JUST LAZY!

It`s all in your head
You`re lazy
You`re not dying
Pull yourself together and get back to work
Get on with your life, like everyone else
You don`t look sick
We all get tired
You make too much of it
But you look so good
You need to exercise more
You`re just depressed
What do you expect me to do?


I`m sure you recognise all or most of these statements if you have M.E. or some other `invisible` illness.
I`ve definitely heard all of these at some time or another from family, friends or doctors. Even after ten years of being ill I have recently heard these words yet again from my family. They are hurtful and upsetting. I want to tell them that I`m not lazy. I`m sick. 



Here is an excellent video with more things that people with an invisible illness are likely to hear.


So why is it so hard to understand M.E.?

I suppose it`s hard to understand because it can be invisible, it`s so variable  and it`s not always easy for others to see what`s wrong with us.  

I think you can only truly understand when you have M.E. yourself.
I often feel that the only people that understand are those like me.

I knew nothing about it myself before I became ill. So maybe I expect too much of others...

Understanding 
Why is it
So hard to
Explain?
Why must I
Repeat once
Again?
Why can`t you
See that I`m
In pain?
Why can`t you
See what`s wrong
With me?
Why don`t you
Support and
Help me?
Why can`t you
Understand M.E.?
 
 
So what can we do to educate others and to help with their understanding?

Here are some of my ideas and suggestions to tell others
https://www.facebook.com/notes/me-matters/telling-others/323368387690211

My way of telling others is to write about living with M.E. through my poems.
I have put those poems into a book My A-Z of M.E. (Myalgic Encephalomyeltis) 
I have sent copies of my book to my family. I think it is beginning to help them better understand my illness. I certainly hope so.

I`ve been writing poems for many years now and my aim is to increase awareness and understanding of life with M.E.

At the same time I am raising funds for the excellent charity Invest in ME
http://www.investinme.org/index.htm 

My book of poems is a must for
  • those who live with M.E.
  • anyone who faces the challenges of chronic and invisible illness
  • friends, family or anyone wanting to understanding M.E.
You can buy it here

In paperback from Amazon UK.http://www.amazon.co.uk/.../dp/1492735116/ref=sr_1_6...
Kindle version on Amazon UK
http://www.amazon.co.uk/.../dp/B00EYXX1NW/ref=sr_1_1...
In paperback and Kindle version on Amazon.com
http://www.amazon.com/My-M-E-Myalgic-Encephalomyelitis-ebook/dp/B00EYXX1NW/ref=sr_1_1?s=books&ie=UTF8&qid=1383303632&sr=1-1&keywords=My+A-Z+of+M.E.+by+Ros+Lemarchand

I hope you too find ways of helping others understand. I hope my book helps make a difference.

A bientot
From the French Femme
xxx



Saturday, 18 January 2014

Alive but not living

As this is my first bog of 2014 I`ll start by wishing you all a `Happy New Year`.

My last blog was one of hope for the year to come. However during the period of Christmas and New Year extra demands were made on me and I found myself going outside of my energy envelope.
 
 

So now I`m in payback time. My level of health has deteriorated. It`s depressing to have gone backwards. It makes me wonder if I will ever truly recover. I know that sometimes we have no choice but to step outside our energy envelope but it`s so unfair that for a little extra enjoyment and pleasure we also suffer.   

I read that 6th January is considered the most depressing day of the year. 
Yet I would be glad to be going back to work! It makes me feel depressed and frustrated knowing that I`m not well enough to work. What`s more I`m unlikely to ever recover enough to do so. I would gladly swap my life if I could. 

It makes me feel as if I`m alive but not living.

 
Alive but not living

Alive but not living
My life has lost meaning
I feel like I`m dreaming
And want to start screaming
I think of life missing
And go into grieving
 There comes some accepting
Yet I can`t help crying
Part of me is changing
There is no denying
For sure I`m not lying
Believe me I`m trying
So hard to keep breathing
Carry on believing
Not to give up hoping
For a cure I`m praying
How I hate this feeling
It`s all so frustrating
I try to keep smiling
But it`s so depressing
Survive but not living
So tired of fighting
Feel no one is helping
I`m left slowly dying.    
 
Now it`s over half way into the first month of 2014 and I still haven`t really recovered. I`m not sure if I`m suffering from PEM post exertional malaise



or going into a relapse.

A relapse seems to be more severe and there`s a completely new baseline going back to the past. Sometimes a relapse can last for years. I hope that`s not the case for me.  

So I`m trying to rest and pace and hope that it doesn`t get worse or last long. 

The CCC ( Canadian Consensus Criteria) describes PEM as usually lasting 24 hours or longer. The word 'relapse' doesn't appear anywhere in the CCC clinical case definition.
The ICC (International Consensus Criteria)uses the term Post-Exertional Neuroimmune Exhaustion (or PENE) instead of PEM. It describes PENE as usually lasting 24 hours or longer, but defines PENE broadly so as to include relapses.


I`m sorry if this blog is somewhat depressing. I am slowly fighting my way back and have not given up hope completely. I`m more hopeful and optimistic when I read what Invest in ME are doing at the moment. This is why a percentage of all the sales of my book are going to IiME.

If you want to read more of my poems and help raise awareness and funds for Invest in ME then you can buy it here

In paperback from Amazon UK.http://www.amazon.co.uk/.../dp/1492735116/ref=sr_1_6...
Kindle version on Amazon UK
http://www.amazon.co.uk/.../dp/B00EYXX1NW/ref=sr_1_1...
In paperback and Kindle version on Amazon.com
http://www.amazon.com/My-M-E-Myalgic-Encephalomyelitis-ebook/dp/B00EYXX1NW/ref=sr_1_1?s=books&ie=UTF8&qid=1383303632&sr=1-1&keywords=My+A-Z+of+M.E.+by+Ros+Lemarchand


Thank you for reading my blog. Now I need to go take a rest as I`m très fatigué
I hope to be back with you soon.
Love and best wishes from the French Femme xxx