Sunday, 18 August 2019

HOLDING ON TO HOPE & FIGHTING TO SURVIVE

Bonjour, 

We've just gone through yet another severe M.E. awareness day and it feels like nothing has changed. The suffering of so many seems endless. 

This is a video my dear friend Miranda made for the day. She is a very brave and beautiful person. 






It's not about being depressed. It's about wanting the suffering to end - to be relieved from what feels like a living death. 

I've recently seen it described by Keith Jarrett as 'Forever Dead Syndrome' 

As endless years go by it's easy to lose all hope. 

I previously wrote about hope in one of my early blogs. 

I'm still holding on to hope. Are you? 



Ciara Maclaverty is also a fellow writer and invisible sufferer and she says 'Still we hope that some improvement will hit us like a ship out of the fog. 
I don't underestimate how hard it is to keep going, to keep fighting, to keep breathing, to face yet another day. 
I was recently asked by Paddy Bates in a podcast as to whether I had hope. You can listen to it here or on iTunes or Spotify. 

I always try to maintain an element of hope. Otherwise I think that I could become very depressed. I'm hoping one day something will happen, something will change and that there will be a breakthrough and that we will all be validated. People will say that we were really ill after all and not making it up! I hope that something will happen in my lifetime and that the cause or maybe more than one cause, will be found. I hope for more clarification, more support, better understanding and maybe a simple cure. We can all hope for that. So hold on to hope. 

In the meantime we all have to learn to live with this illness. I've kept myself going by writing my poetry and my blogs. Of course we are all different to a certain extent and find our own way of surviving. 

I'm just going to end by thanking Paddy Bates for inviting me on to his show. Please take a listen to my podcast and those others that he has done. 

À bientôt
from the French Femme
xxx   


Tuesday, 2 July 2019

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   


Tuesday, 4 June 2019

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   

Monday, 29 April 2019

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

Thursday, 28 March 2019

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

Tuesday, 5 March 2019

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


Monday, 11 February 2019

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