BEYOND HELP?

Bonjour, 

Today, the 8th August, is SEVERE and VERY SEVERE ME AWARENESS DAY

Although I don't have severe M.E. , I do have relapses where I become more severe. I worry that I will stay at that level. So I only have a taste of what it feels like to have severe M.E. 

I can only imagine how it must feel to be at a severe or very severe level all the time. I have written some poems to try and express how that must feel. 

This is one of them 

Beyond Help 

Alive but not living

Feel dead yet still breathing

In the dark I’m lying

And silently crying

I try to keep hoping

But nothing is helping

Doctors should be caring

But they’ve stopped visiting

With poor understanding

'Beyond help' they’re thinking

So nothing is changing

I’m left slowly dying

My days never ending

This prison enclosing

Abandoned, despairing

Isolated, waiting

Until my life is ending

I also dedicated this poem to poem  Lotta Wirström (from Sweden).  

Lotta became so ill that she sadly took her life.  

How many more have done the same? How many more give up the fight? Suicide is a common cause of death of those with M.E. 

Wendy Boutilier has done some amazing graphics and shared quotes for 8th August 2021. You can see them here  on Facebook and here on her website  

I accepted her invitation to write a quote. This is my contribution. 

This neglect has to  end. It's unacceptable that people should be abandoned and labelled as beyond help. Please join me and share as much information as possible today and every day.  

Thank you

A bientot from the French Femme xxx  

ALL CHANGE!

Bonjour! Sorry I haven't been around for a while but my personal life has gone through some radical changes. I have moved house, moved department and moved from a house to a caravan. Of course we all know that moving is one of the most stressful things you can do in life and with a chronic illness like M.E. it's even harder. BUT sometimes we have to go through difficult changes to get to a better life the other side.  

I've always dreamed of living near the sea. Now that dream is nearer to a reality and the sea is only a short drive away. I think that despite illness we still have to keep our hopes and dreams alive. We still need goals and something to aim for. We have to live the best we can. 

So I decided to push myself beyond my limits, risk a serious relapse and make changes. Of course I have been suffering with post-exertional malaise as well as lots of aches and pains but the benefits are already beginning to make it all worth while.

Here's a photo of me at the sea front when I first arrived a month ago.

 

 

The sea air is so refreshing and immediately I felt better. 

I believe it's called the locations effect.

 

I know we are not all able to change our circumstances but I think even small changes can help and give us a boost.

 

Anyway this is just a short blog to let you know a little bit about what has happened to me recently and that I haven't completely gone away!

 

I'm slowly getting back to writing my poems and will be sharing them with you once again.

 

A bientot

From the French Femme xxx

M.E. GROUNDHOG DAY

This is the second in a series of blogs dedicated 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). 

Last year, for the first time, I became involved in The Big Sleep for ME and some of my poems were cleverly illustrated by Julia Cottam and by M.E. Awareness: Words and Pictures 

The Big Sleep for ME is a fundraising and awareness event helping Invest in ME find a cure for ME (Myalgic Encephalomyelitis). It includes a mass 'Sleepathon' during ME Awareness Week (11-17 May). 

 

Julia asked me if I could contribute poems for each day of the 'Sleepathon'. They proved to be a huge success. It made my poems come alive.

Following the fantastic response I received to my poems I felt confident to write more poems and before the end of the year I published a book via Amazon 

Julia has written a lovely blog about me, my poetry and my book Dreams can come true.

One of the poems from last years 'Sleepathon' was called 'M.E. Groundhog Day' after the film of that name.
 

It was also written to coincide with the International M.E./CFS & FM Awareness Day on 12^th May.  

    

The idea originated with Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases). Mr. Hennessy was based in the US but understood that it needed to be an International event. He designated May 12 as the International Awareness Day for the spectrum of illnesses he called Chronic Immunological and Neurological Diseases (CIND).

May 12 was chosen as it coincided with the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale became chronically ill in her mid-thirties with a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)-like illness. She was often bedridden for the last 50 years of her life. Despite suffering from a debilitating illness, she managed to found the world’s first School of Nursing.

Mr. Hennessy included ME/CFS (also known as Chronic Fatigue and Immune Dysfunction Syndrome -- CFIDS), Fibromyalgia, Multiple Chemical Sensitivity and Gulf War Syndrome under the CIND umbrella. These illnesses, characterized by cognitive problems, chronic muscle and joint pain, extremely poor stamina, and numerous other symptoms, afflict people around the world in alarming numbers. 

http://www.may12th.org/ 

GroundhogDay is a 1993 American comedy film where Murray plays Phil Connors, an egocentric Pittsburgh TV weatherman who, during a hated assignment covering the annual Groundhog Day event in Punxsutawney, finds himself repeating the same day over and over again. After indulging in hedonism and numerous suicide attempts, he begins to re-examine his life and priorities.

M.E. is much like that where the same day is repeated over and over again and like the film we are forced to re-examine our lives and priorities because of this illness.  

It's twelve years since I first became ill and recently I have been doing a review of my illness and my life. I've decided I need to change, put me and my health first. I have to say "No!" more often and not be bullied into doing things that are beyond my ability. I have to stop pushing myself and making my health worse. 

Maybe on 12th May it's a good opportunity for you too to reflect on your life and your priorities. 

Now we are approaching the 'Sleepathon' for 2014 and once again Julia has asked me to contribute

So during M.E. Awareness week 11 - 17th May more of my poems will be appearing, thanks kindly to Julia Cottam and The Big Sleep for ME team. 

Not to be missed so keep an eye out! 

A bientot 

From the French Femme xxx         

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