I NEED A HOLIDAY FROM M.E.

I want to dedicate a series of blogs to those who have helped and supported me. They are an inspiration to me in all they do in the cause of raising awareness and understanding of M.E.  (Myalgic Encephalomyelitis)

The first is Jo Best who kindly wrote the introduction to my book
'My A-Z of M.E.' and who does so much despite suffering herself with M.E.

She is very active on face book and in raising funds for the charity Invest in ME.

Recently she posted something which has inspired me to write a poem.

M.E. is usually a long term or even lifelong chronic illness. It's relentless and there is rarely a good day. We forget what it's like to feel 'normal'. There are so many symptoms and each day feels like a battle. We would do anything to have a break or escape from this life which has been imposed on us. We need a holiday from our life with M.E. 

So this is  dedicated to her

Holiday 

I need a holiday

To walk away from me

To become someone else

And to live normally

 

I want a holiday

A break from all the pain

I’ve forgotten what’s it’s like

To feel normal again

 

I need a holiday

To escape from M.E.

A break from this battle

That I must face daily

 

I want a holiday

A break away from me

A break from this illness

To become M.E. free

 

I need a holiday

To escape this life now

To rediscover me

If only I knew how

 

Thank you Jo for all that you do and all the help and support you have given to me and many others. 

 

Let's hope that we all have a permanent holiday from this illness one day! 

 

Merci beaucoup

 

The French Femme

 

A bientot

xxx 

 

 

 

Isolated

Many people with a long term chronic illness become isolated.

There could be a combination of reasons for this. Perhaps you can identify with any or all of the below

• you lose contact with family and friends who don't understand your illness or who don't know what to say or do.
• you may become bed bound or house bound and are no longer able to leave the house.
• you are unable to work.
• you are no longer able to socialize.  
• you are too ill to spend long on the phone, if at all
• you may be too ill to write letters 
• you may not have access to a computer
• you may be too ill to spend a lot of time on the internet
• you may live in an isolated place and are unable to drive or use public transport
• you live alone

Recently I have felt more isolated than normal.

Why? Simply because I had computer problems and for nearly two weeks I was without one. I lost contact with my friends and family. I lost all the help, friendship and support I find on a daily basis through my computer. Most of it is on face book where I have built up over many years a wonderful network of friends who make all the difference to my life. Without it I felt totally lost, had withdrawal symptoms, felt lonely and started to feel depressed. I had other things I could do and took to writing more poems. But I missed that contact. 

Thankfully I have now resolved my computer problems but it has made me think and realise how my life has changed and how I am dependant on my computer and this virtual world I have created. 

I have written a poem about being isolated 

Isolated

From all I know

From all I love

Fills me with woe 

Isolated

From family

Don`t understand

Or visit me 

Isolated

As friends I lose

Living alone

Now a recluse 

Isolated

Now friends `online`

Virtual world

Eases my time 

Isolated

Sick and in pain

My life now changed

Nothing the same 

Isolated

And so lonely

I cry some tears

Thinking “If only” 

Isolated

Each endless day

In these four walls

I have to stay 

Isolated

I hope and pray

I can escape

And get away 

Isolated

Watching outside

Through my window

Life that`s not mine 

Isolated

Behind a veil

Trapped inside

Just like a jail

 

So what can you do to avoid isolation? 

Of course without recovery to full and normal health it's hard not to feel isolated and there is only so much we can do.

Here's my list of suggestions that may help you to feel less isolated and lonely

• sign up to face book or any other online forums relating to your illness as it helps so much to find others who suffer the same
• find and join a local support group in your area
• when you feel well enough arrange to have a chat with a friend or a member of your family who understands and is sympathetic, as even five minutes can lift your spirits
• write a short letter if you are able and maybe you will receive one in return
• if you feel well enough go out but plan and make sure you have rests before and afterwards
• if you feel well enough arrange for a friend or family to visit for a short while but don't be afraid to ask them to leave
• I find listening to the radio or the tv helps me

 

Maybe you have other suggestions. I would love to hear from you.

Meanwhile, as in the photo above, this caterpillar has found her wings and can fly away from isolation. 

A bientot from the French Femme

xxx 

I LOOK BACK

Bonjour,

It`s hard to live with a long term chronic illness. We are forced to adapt and change. Life can no longer stay the same. We go into grieving for the life we have lost and it`s hard to find a way forward and find a new life.  We look back at the life we once had and the person we used to be. We might be tempted to say "If only.." or "What if?" but that doesn`t help.

Personally I try to take one day at a time, not to look back and not too far in the future. Otherwise that`s just a recipe for depression. Still sometimes I am reminded of my life before illness. This short poem of mine is a summary of a look back and looking forward...

I Look Back

I look back

and what do I see?

Someone else

that I used to be,

a person

happy and carefree,

a life that

was full and busy,

a purpose

with dreams for me,

now a stranger

Was that really me?

Look forward

and what do I see?

I`m not sure

what I can now be.

All feels lost

a life that`s empty,

life ended

what future for me?

A new life

I must make for me,

a life sick

a life with M.E.

 

But what if you could go back to the past. What would you do differently? What advice would you give to your earlier self? 

In Star Trek The Original Series there`s an episode about time travel The City on the edge of forever where `The Guardian of Forever` is a door way to any time and place.

This `Guardian of Forever` is used again in Star Trek The Next Generation in a story called Imzadi where Admiral Riker uses this door way to save Deanna who is the love of his life and his Imzadi.

 

 

Now imagine if you could use such a door way and go back in time. What would you do or say to advise your earlier self? 

If I could use the time portal as in Star Trek I would go back in time and tell myself about M.E.

These are the things I would say

• Take it seriously from day one 
• Don't push yourself 
• Don't do graded exercise
• Change your doctor if you are not happy with your treatment
• Don't resign from your job
• Try to get ill health retirement 
• Don't force yourself to work at any cost
• Don't take on a new job when you know that you are not well
• Be honest with yourself about your level of health and your abilities
• Find as much as possible about your illness
• Accept that it's likely to be a long term chronic illness
• Accept sooner and not fight against it 
• Know that you will have some bad and good periods 
• Avoid stress as much as possible 
• Don't make any assumptions
• Plan your life according to the restrictions of your illness
• Rest and relax more
• Don't waste time trying to convince family and friends that you are truly ill 
• Learn how to pace and best manage your illness 
• Say "no" more often 
• Don't be bullied into doing things that are too much for you 
• Don't worry about what you can't do 
• Take better care of yourself and put your needs first 
• Accept more help and support
• Push for more help and support from the medical profession
• And above all know that life will go on albeit not the same

I wonder if I had all that help and advice that things may have been different for me? 

So if you had the chance to use such a time portal what would you say to your earlier self?

Well time travel hasn`t been discovered yet! I can look back at my past but I can`t  go back and change it.

BUT what I can do is to help others who are newly diagnosed with M.E. I can give some help and advice which I didn`t have. I can help others not to make the same mistakes.

Here`s a good starting point for the newly diagnosed. Although it`s a relief to have a diagnosis it can be overwhelming.

Now I wonder what I would find if I used the time portal to make a trip into the future. Perhaps it`s best not to know!

A Bientot

From the French Femme xxx

What is your pain level today?

I`ve recently spent a week in a pain clinic which is part of the Neurology department in a French hospital. Most people with M.E. or Fibromyalgia suffer with chronic and long term pain. I`m no exception. However until my stay in hospital I`d never had any help, advice or support on dealing with that pain.

To be honest, pain has not always been a major symptom, apart from when in major relapse. However it has recently become more of a problem for me. Just before and during my stay in hospital I`d developed chronic pain in my neck, shoulders, back and spreading into my arms. It became unbearable. I don`t mind saying that it made me cry. 

So what had I done to bring on such pain? Well I`d pushed myself to try and carry out activities of pleasure - like a `normal` person. That was a big mistake! The result was chronic pain.

How do people cope with chronic pain on a daily basis? How do you assess and rate your pain? In hospital I had to fill in lots of forms and evaluate my level of pain every day like this...

 

 

There are lots of words to describe pain. I used some of them in my poem here..

 

Pain that

Is strong

And so

Hard to

Endure

So much pain

Awful pain

Chronic pain

Severe pain

Widespread pain

Terrible pain

Horrendous pain

Persistent pain

Unexplained pain

Disabling pain

Terrifying pain

Radiating pain

Unrelenting pain

Unbearable pain

Agonising pain

Excruciating Pain!

Pain!!!!!!!!!!!!!!!

 

How do you describe your pain? 

What helps you with your pain?

In the pain clinic I was given some tips for dealing with chronic pain. However, like many with M.E. I am sensitive and intolerant to many medications so I am left with paracetamol or ibuprofen.  

They gave me a heated linseed compress which helped with my pain. So I have now purchased one for use at home.  

I was also introduced to a Tens machine which I am going to try using on a regular basis to see if it makes a difference. What have I got to lose? 

Otherwise I will have to be more aware of any activity that will increase my pain levels. I will have to plan before and afterwards so as to avoid the crisis of pain. I have to learn to live better within my limits and not push those limits. 

My stay in hospital has helped me to review my options and think about pain along with all my other symptoms. So it was on the whole a week well spent. 

Do you have any other tips or advice? I would love to hear from you.

A bientot!

From the French Femme xxx 

 

My Award acceptance and nomination blog

I`m fairly new to this blogging lark . So I was very pleased and surprised when I saw that Tanya Tonks Mawer had nominated an award to me and my blog. I have recently discovered her excellent blog Crazy Purple Mama.

I started my first blog with the help, encouragement and excellent example from Mama Chill and the help and guidance from The Big Sleep for ME.

The idea of sharing and nominating blogs was started by Sally Burch from her blog Just ME. I think it`s an excellent initiative and so I am trying to support it.

My problem is that the blogs I have read or previously commented on have already been given awards!

So who to nominate? I`m not familiar with many blogs. 

Anyway here are my nominations

M.E. Space
http://www.mespace.org/blog
This is part of a very warm, bright and welcoming site for sufferers, their friends, family and carers. There are lots of creative ideas especially for the young.

Crafting with M.E.
 http://poohbear71.blogspot.co.uk/ 
A lot of people with M.E. are very artistic and Jane Shaw`s blog is full of wonderful craft projects and ideas along with glimpses into her family life as she battles against her illness.       

Sally`s ME/CFS Blog
http://sallysmeblog.blogspot.fr/2014/02/an-introduction.html#comment-form
This lady is a new blogger. As I liked her first blog I have decided to include her in my nominations. She says she wanted to start a blog in the hope that it helps other people. This is what I aim to achieve in my blogs. I hope this will encourage her to continue writing.    

Here are the instructions

ME & CFS & FMS BLOGGER AWARDS: Awarded by bloggers, to other bloggers, to acknowledge outstanding endeavour in promoting awareness of Myalgic Enchephalomylitis (ME), Chronic Fatigue Syndrome (CFS)  and/or Fibromyalgia (FMS).

The blogs receiving the awards do not need to be dedicated solely to ME, CFS or FMS, but they should contain at least one post that has helped to increase awareness.

It is hoped that these Awards will increase blog readerships and also encourage networking between ME & CFS & FMS bloggers themselves.  No matter the title of our diagnosis, patients of these conditions all suffer from a frustrating state of health that is poorly recognised by most of society.
HOW IT WORKS: 1,   On receiving the ME & CFS & FMS BLOGGER AWARD, you should be directed to a post that describes why you (and others) have been given this award.  The page will also include this set of instructions and the two award images.

2. Please note, you do not need accept the award.  The aim of the awards is about recognition and a bit of fun, NOT extra work! Please do not feel pressured to participate.

3. To claim your award:

a) Create a new post on your blog, in which you thank the individual who gave you the award  (remember to include a link back to their blog).  You can then copy the images to your blog post and/or side bar as you wish.

You may need to click on the image and download it before putting it into your own post.

Below is the code for adding the small image as a link in your blog side bar if you wish to do so:

< a href="
http://sallyjustme.blogspot.com/2014/02/launching-me-cfs-fms-blogger-awards.html
" target="blank">
< img src="http://i68.photobucket.com/albums/i4/salpublicphotos/BloggerBadge_zps26d28ded.png"/>
< /a>

b) List three to ten blogs that you would like to recommend, giving a brief description of why you think each one is special.  A couple of lines is fine, but be sure to include a link to each blog you name (or specific page if you prefer) so that others are encouraged to visit.

c) Copy and paste these instructions into your post. Copy from the first *** above, to the last *** below to ensure that every thing is included. (Add the images separately if they don't copy automatically. Control-Shift-V also removes crazy formatting during pasting if that is a problem. ;) )

d) Alert your chosen blog owners to their awards by making a comment on the most recent post of their blogs.  The comment could simply read:
"Congratulations, I have nominated your blog to receive an ME & CFS & FMS BLOGGER AWARD.  Please visit <insert link to the post you have just created> to collect your Award"

3. Hopefully these awards will spread far and wide.  I would love to keep track of where the awards end up, so I would be very grateful if participants would also copy their list of awards into a comment beneath this post:
http://sallyjustme.blogspot.com/2014/02/launching-me-cfs-fms-blogger-awards.html.
I hope that collecting all the recommendations in one place will help each of us to find and explore new blogs.

THANK YOU ALL FOR PARTICIPATING.
Sally
http://sallyjustme.blogspot.co.uk/

Kindness

In a previous blog I talked about turning the negative into positive. One of the positive things to come out of being ill is all the wonderful people I have met and the fantastic friends I have made through social networking sites.

I know many of us lose friends and family because of this dreadful illness but thank goodness there are others like us who suffer the same who provide invaluable help and support. It`s this friendship and kindness that has made all the difference to me.

I have expressed this kindness in one of my poems

 

Kindness

The kindness of others

Who all suffer the same

Provides me with support

And helps to keep me sane! 

When I read your kind words

Tears well up in my eyes

Emotion overwhelms

Taking me by surprise 

Such a little kindness

I find goes a long way

And makes a difference

To a difficult day 

A few kind words and thoughts

I sure appreciate

And I thank you so much

My friends are truly great.

 

 

 

 

This kindness has been further extended and demonstrated since I`ve published my book of poems about M.E.

I`ve had some wonderful response, reviews and feedback. It has moved me greatly and brought tears to my eyes.

It happened again a few days ago when one of my friends did this review of my book by video.

Another friend wrote a lovely blog about me, M.E. and my poems.

Fortunately my husband is always on hand with the tissues!! 

So now I would like to thank all my friends who have helped and supported me in recent years. I would like to thank those who have bought my book and those who have left kind comments and messages . You make it all worth while.

You can buy my book on Amazon.co.uk here or on Amazon.com again here

A percentage of all my sales are going to Invest in ME

And don`t forget that if you like my poems to leave a review. 

Merci beaucoup.

A bientot from the French Femme xxx

DON`T ASSUME...

In my last blog I talked about some of the prejudice and misconceptions that I and many others face living with M.E.

The other problem that I face is the assumptions made by so many people regarding my illness. Myalgic Encephalomyelitis is hard to see and understand. Some may describe it as an invisible illness. 

Assumptions are often made according to my appearance.

But what does a person with invisible disability look like?

Assumptions are made about my ability and my disability. 

Some have tried to create disability levels or scales for M.E. 

Here is one example created by Dr David Bell  

I don't like these scales very much as this illness varies all the time and I don't think we can be placed in one box or disability level. Still they are a useful guide.  

At one end of the scale some people are unable to get out of their bed and never leave their home and at the other end some are able to work.

So no wonder it's hard to understand this illness. 

I guess I fall somewhere in between moderate and severe, depending on which scale I look at. Though I've had period in the past when I was at a mild level and able to work full time. I tried everything to stay in work and made a lot of adjustments to my work and my life. Unfortunately I was unable to continue working and had to concede that it was not longer possible. 

I wrote this poem from my own personal experience. Often I look well and it's hard for others to see my health problems and my disability. Even though I have proof of my illness my appearance can seem normal!  

Don’t 

Don’t assume because I’m younger than you

I’m healthy, strong and can stand in this queue.

Don’t think I have plenty of energy

At seventy-five you have more than me!

Don’t look at me as if I have no right

The last thing I want is to make a fight.

Don’t say that there is nothing wrong with me

My handicap is not easy to see.

Don’t be so rude, please show me some respect

It’s what I deserve and hope to expect.

Don’t treat me like a liar and a fake

This illness is for real, make no mistake!

Don’t be so cruel and cause me distress

When you say it’s nothing but laziness.

Don’t judge me when you don’t understand

I’m truly ill and need a lending hand.

Don’t tell me how I really look so well

It’s only those closest to me can tell.

Don’t you consider how hurt I might be

By your words and actions made carelessly.

Don’t assume that you have priority

I have proof of my disability!

Many people assume that just because I can do something one day that I can do it the next day. They may even assume that I have recovered! Generally, I'm only seen outside of my house when I have to do something, like go to a medical appointment, or when I have a relatively better day. Of course I'm not visible the next few days afterwards when I try to recover. 

Just because

I can do this

today

doesn`t mean

M.E. has gone

away

Just because

I look well and

OK

doesn`t mean

I really feel

that way

Just because

there is nothing

you see

doesn`t mean

That I`m fine and

healthy

Just because

you don`t accept

M.E.

doesn`t mean

you can treat me 

disrespectfully

Like many with M.E. I try to pace and rest. This helps me to manage and organise my day and any activities. It helps me to avoid post exertional malaise.  If I keep to my base level of activities I can hopefully avoid any setbacks or a relapse.

We all make assumptions in life. We assume that as we get older we will be able to do less. Recently I saw a story on French tv about a 105 year old  man who cycles 14 km a day! I`d be lucky if I could cycle even 1km a day. 

All I ask is that others don`t assume anything about me, show me some respect and some understanding.

Merci!

A bientot from the French Femme

xxx