HOT AND COLD (part 2)

Bonjour, 

This is a second and updated blog about loss of thermostatic stability and intolerance of extremes of temperature in M.E.

You can read my first blog here 

I decided to rewrite this in the light of the sudden and extreme hot weather that has recently been experienced in many parts of Europe including where I live in France. 

In the International Consensus Criteria for M.E. loss of thermostatic stability is one of the symptoms as is intolerance of extreme temperatures. 

'Loss of thermostatic stability - subnormal body temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities; intolerance of extremes of heat and cold'  

I have difficulties in adjusting to temperature changes and the seasons, especially if sudden and dramatic. So does my cat Florence! This is how I felt last week when the temperatures shot up to an uncomfortable and intolerable level. 

Sudden changes in temperature are known to bring on a relapse of M.E.

I once had a major relapse when there was a sudden and huge change in the weather. In a matter of days it turned from Winter into Summer. My body just couldn't adjust that quickly and I suffered badly for many months afterwards. 

When I first became ill I felt cold all the time, even in the middle of Summer, and often had cold fingers or toes. At the time I had no idea what was going on. I still have occasions when I become cold all over and it takes ages to warm up. I've been known to go to bed with wearing pyjamas, dressing gown, thick duvet and covers along with a hot water bottle and still feeling cold! Then all of a sudden it's as if someone has flicked on a switch and I become hot all over - in fact just the reverse, too hot. My body is unable to regulate temperature and changes. 

Entering into menopause only makes things worse.  All the night sweats start.
I had a period of years when I woke up many nights drowned in sweat even though it was cold in the bedroom. I would start off covered up, wake up hot, throw off all the covers and then within minutes freezing cold again!!!

Bizarrely I even have times when one part of my body feels hot and the other cold. Do you? That's so difficult to manage. 

This is the poem I wrote about being hot and cold 

Hot and Cold

My thermostat

is not working

out of control

either too hot

or very cold!

How can I be

both hot and cold?

Body confused

instead chaos

has taken hold!

Don`t understand

why I feel hot

when it is cold

why I feel cold

when it is hot!

Temperature

always changing

never the same

one minute cold

and then BOILING!

A sudden sweat

comes over me

take off layers

but then I feel

Cold instantly!

Hard to control

and keep stable

What must I do

to make myself

Comfortable?

I wonder how you cope with these symptoms of M.E. 

In part three I'll explore some of the tips and advice that may help you and me. 

Until then stay cool or warm whatever may be the case for you right now! 

À bientôt

from the French Femme

xxx   

THANK YOU

Bonjour, 

Well I made it through awareness raising in May, although it was touch and go at times! 

I want to thank all those who supported me, who bought and shared my book, who shared my posts and poems, who liked my posts and poems, and for all the wonderful comments and feedback. It was mostly empathetic and helpful. Inevitably you can't please everyone and some were upset by my poems and posts. I tried to give warning if the content was sensitive and possibly upsetting. I can understand that some didn't want to be reminded of their illness and how they felt. 

BUT my poems are about the truth and reality of living with M.E. which is a very cruel, harsh and devastating illness. And of course sometimes the truth hurts - even for me. I don't need to be reminded of my illness BUT I do need to make others aware of the suffering. My poems not only express how I have felt ever since becoming ill but those of others. I hope that I am speaking for those who are unable to express how they feel. I hope that I speak for the silent majority and use my voice and my words to do so on their behalf. 

At the beginning of May I nearly gave in and abandoned my awareness raising project. Thankfully from the support of a few good friends I carried on BUT it was not easy. 

Physically I suffered with pains in my hands, arms and shoulders. I had to increase my painkillers and use a support bandage on my hand. Although I paced and rested a lot I found myself needing more sleep. 

Mentally was a challenge as often brain fog would make it very hard to write something sensible! 

Above all emotionally it was very hard and upsetting to look back at my life since I became ill over 17 years ago. I had quite a few tears. 

Still I believe it was all worth it. 

If you missed my poems here is a little video I made 

 Thank you 

À bientôt

from the French Femme

xxx   

31 DAYS IN MAY

Bonjour, 

Although I do awareness raising for M.E. all year long through my blogs and my poetry, in May I try to do something a little more and a bit different.  

This year I'm pleased to announce the publication of my new book of short poems. It's entitled 31 days in May. 

In my new book there is one poem for each day in May, a total of 31.

These short poems express simply and clearly the reality of what it's like to live with a chronic illness like M.E. 

They express how I feel and reflect the feelings of so many in the M.E. community. 

Some of my poems could also apply to other chronic illnesses. 

Some of my poems you may have seen before but the majority I have written in the last year. 

Some are a little longer. 

Some have a link to Star Trek (my life long love and passion). 

Some you may find upsetting but there is no point in pretending that all is ok. 

I will also be sharing one of these poems each day to coincide with awareness month. You are welcome to share this blog as well as any of my poems.  

Finally and importantly I have decided to donate all proceeds from the sales of this book to the charity Invest in ME Research, not just in May but at any time. I am also very grateful that Kathleen McCall, the chairman of the charity, agreed to write the foreword for my book. 

I have set up a Just Giving page where all donations can be made.  

I don't write and publish my poetry to make a living but rather to increase awareness and understanding and to help others who suffer like myself. 

It takes a great deal of time and effort and there is always payback on my health. 

My book is available in both paperback and kindle versions on amazon in many countries throughout the world. 

Here are links to some of these. 

Amazon UK paperback version 

Amazon kindle version 

Amazon France paperback version 

Amazon France kindle version 

Amazon.com paperback version 

Amazon.com kindle version 

I hope my collection of poems convey a strong and simple message. I want better understanding and support. I want the suffering to end.

Please support me and Invest in ME Research.

Thank you 

À bientôt

from the French Femme

xxx

YEARN

Bonjour,

This time I want to talk about another emotion that I feel. 

Sometimes I yearn to escape, to get away, to go outside, to leave the four walls that surround me, to have a change of scenery, to do something spontaneous without any payback, to be able to go out with friends or family, to go for a long walk, to rediscover that carefree person I once used to be.   

To yearn is an emotion when we long, hanker or pine for something. 

It can be a very powerful emotion. 

We may go through physical or emotional suffering as a result of real or apparent hopelessness.   

With a chronic illness like M.E. we often yearn to feel better, to feel normal, to recover and to have a normal life.  

We yearn to have our lives back and do all the things that we miss.  

However, it's something that can not be easily obtained - if ever again. 

Do you feel the same?

Is there something that you yearn for? 

Yearn

I yearn to

Be healthy

And to

Have some fun

Go outside

To breathe the

Fresh air

In the sun

I yearn to

Be healthy

And to

Have some fun

Meet my friends

To drink, chat

Laugh, joke

Walk or run

I yearn to

Be healthy

And to

Have some fun

However
because of
 illness
it can't be done 

So how can we cope with this overwhelming emotion? 

I have a few suggestions

• share how you feel
• talk to someone about how you feel
• find acceptance 
• acknowledge that it's natural and ok to have these feelings
• try to appreciate what you have inside those four walls
• try to find little occupations that distract your thoughts

What helps you? I would love to hear from you and if you have any tips. 

Thank you. 

À bientôt

from the French Femme

xxx

FEELING JEALOUS

Bonjour, 

Today I want to explore another emotion that I sometimes experience. I sometimes feel jealous of others who are well and healthy. 

Last week I had a visit from a friend who is a little older than myself. She was telling me about her very active life. She goes hiking twice a week, goes swimming, sings in a choir, goes to a needlework group once a week and often  visits and stays with her family. 

As she talked it reminded me of all the things that I used to do and have lost because of this chronic illness M.E. 

I used to love walking and especially hiking. I used to love to swim. I used to love playing tennis. I used to love cycling. I used to belong to many evening classes and groups. I used to work full time. I would visit and go out with family and friends. I used to have a full and active life. 

Now I'm mostly confined to my home. Any trips out are rare and usually make me feel worse and it takes a long while to recover.    

So yes it does make me feel jealous. But what can I do with this jealousy? It only eats me up and makes me feel worse. 

I can't spend my life wishing for what others have. Instead I must try and appreciate what I do have. 

I must stop trying to compare myself to others. 

I have to try and compensate and try to find other things to occupy my time and my mind. 

I should try and remind myself that many people in this world do not have the basic things I take for granted. 

Maybe I should understand that I have many things that other people would be jealous of. 

So instead of feeling jealous and sorry for myself I'm now going to write a list of at least twenty things that I have that other people would want - even as basic as having running water. 

Perhaps you might like to do the same.   

Jealous

Of those who can have a good time

Reminds me of a life once mine

Jealous

Of those who are healthy and fit

That was me until I lost it

Jealous

Of those who go to work each day

I never thought I`d feel that way

Jealous

Of those who can plan life ahead

Mine is wrecked and I stay in bed

Jealous

Of those who can fulfil their dreams

Now my life has ended it seems

À bientôt

from the French Femme

xxx

FEELING SAD

Bonjour, 

In my last blog I asked if we can be happy with a chronic illness. 

This time I want to explore another emotion which is common with a chronic illness - the emotion of feeling sad.  

Sometimes I may cry when feeling sad. I wrote about this in a previous blog. 
It's inevitable that we are going to feel sad at times when we live with a chronic illness like M.E. 

Some become depressed. 

I feel sad 

• when I look back at the past
• when I'm reminded of my life before becoming ill
• by the loss of family and friends
• when I'm unable to accept an invitation to go out
• when I have to make a cancellation as I feel too ill
• when I'm too unwell to travel and visit family or friends
• when I think of how many have suffered   
• when I think of those who are still suffering
• when I think of those who have died and who I have lost to this illness
• that our suffering has been ignored for so long
• that so many of us have been pushed into treatments that are harmful
• by how badly so many are still being treated
• when I read about horrific stories of suffering
• that so many young people lose the chance of a life because of this illness 
• and crying from relief when we are believed 
• and crying when we are heard
• and crying when at last it feels like we are being recognised

What makes you feel sad? 

À bientôt

from the French Femme

xxx

CAN YOU FEEL HAPPY WITH A CHRONIC ILLNESS?

Bonjour, 

As I write this blog I realise that it's been over 15 years since I first became ill. Through 2002 I gradually deteriorated. By the start of 2003 I completely collapsed and thought my life was over. I went through many emotions. I was frightened and confused. I was angry and frustrated. I became somewhat depressed. I could see my life slipping away. I contemplated suicide. I went into grieving. I thought that I would never be happy again. 

However with time there has come some acceptance and with this new ways to be happy. I have tried to turn the negative into the positive. I've tried to rebuild a life, a life with a chronic illness. 

I believe that how we deal with chronic illness depends on how we deal with other things in life. We are all different and some cope better than others. If we are ill for a long period of time it's not helpful to be always miserable and moaning about our lot. Of course we are bound to have days and moments when we feel down and feel the huge sense of loss. 

One of my friends recently wrote " Loss of independence, job, social life, ability to drive, work, go on holiday, go out on my own again - something I have not done since 2004. How can you be both happy, and ill? I have been asked this. Well, 14+ years would be a bloody long time to spend moaning about it. Oh, I have my moments!" 

And I do as well! There are times when I still feel angry, frustrated and even have a good cry. BUT life is too short. We need to be grateful for life despite having a chronic illness. 

I consider myself, like my friend, a person who is naturally happy, optimistic and positive. Although I totally understand for some people depression comes along with chronic illness and they find it hard to be happy. 

For those who find it difficult to cope here are a few tips

1. Accept that you need to slow down and know your limits. 
2. Look after yourself and be selfish. What do you and your body need?
3. Try to find something good in every day, no matter how small. 
4. Remember that chronic illness is only one part of your life. You may still be able to enjoy other aspects of your life. 
5. Try to find a purpose in your life. It will no doubt have changed with chronic illness but you still may find new pleasures and challenges. 
6. Connect with people who make you happy and with whom you may share your feelings.   

Feeling happy may also depend on your circumstances and feeling that you have love and support from family and friends. Not everyone has that. 

In March 2003 my circumstances unexpectedly changed. I was lucky when I  found love and someone to care for me. For a while this brought some happiness into my life. 

A lot of my happiness and sense of purpose has arisen from my poetry and my writing.   

Happiness has also come from the wonderful friends that I have found in the ME community. Many of these friends I have never met but their kindness and support has helped me enormously. 

Happiness sometimes comes from simple things - 

• the sun on my face
• listening to a bird sing
• listening to a good audiobook 
• being able to read a book
• listening to my favourite music
• finding something that makes me laugh
• having a shower
• a good night's sleep
• a nice cup of tea or coffee
• a piece of chocolate or a biscuit
• having a cuddle with my cat
• a kind word or compliment
• being able to talk to a friend   
• helping others

Happy

I used to be happy

Look forward to each day

Then M.E. came along

And took it all away!

My happiness was gone

Replaced by a grieving

Anger and frustration

And numb kind of feeling.

I thought life had ended

And chance for happiness

With all my days now filled

By this chronic illness

Yet slowly there has been

Acceptance within me

Adjustment of my life

New ways to be happy. 

What makes you happy? 

I look forward to hearing from you. 

À bientôt

from the French Femme

xxx