Sunday, 3 November 2019

FEELING VULNERABLE

Bonjour,

In my recent blogs I have been writing about some of the emotions that we may feel when living with a chronic illness like M.E. 

Feeling vulnerable is possibly at the core of all our emotions. 

Feeling vulnerable can be brought on by any number of reasons but when we become ill with a chronic illness we feel weak.  

Feeling vulnerable comes in many forms and can be physical, emotional, economic, social or environmental.  

Personally I feel as if I have become more vulnerable since falling ill. I feel more fragile, more emotional, more alone, more anxious, unable to cope with so many situations or people, worried about so many things and so prefer to stay in the comfort and safety of my home.  

Do you have those days when you feel so vulnerable and alone?

Do you feel that you have changed with chronic illness? 

It's hard enough dealing and coping with all that life throws at us without a chronic illness on top of all that! 

Personally I feel as if that once strong, independent, confident woman that I used to be has disappeared and I'm not sure she will ever return. 

On some days I have a glimpse of her but it's only short lived before I'm back to this chronically sick person who feels so vulnerable. 




Vulnerable


I feel vulnerable
open and exposed.
I feel emotional
and on overload.
I feel so defenceless,
bare and insecure.
I feel so powerless,
weakened and unsure.
I feel loss of control
in all around me.
I feel trapped in a hole,
anxious with worry.
I feel so exhausted
and with no reserve.
I feel energy sapped
and need to conserve.
I feel so neglected,
lonely and alone.
I feel unprotected
so stay in my home.
I feel vulnerable,
very close to tears.
I feel emotional
and panic with fears.
I feel so overwhelmed
uncertain and raw
I feel lost and engulfed
I'm not strong any more




What can we do to help ourselves from feeling less vulnerable?


Here are a few suggestions 
  • talk to someone 
  • ask for help
  • try writing down how you feel
  • cultivate of sense of self worth
  • develop and maintain a sense of humour
Perhaps you have other others. If so I would love to hear from you. 

À bientôt
from the French Femme
xxx   

P.S. I've reviewed and changed the last line of my poem after a kind and helpful comment. Perhaps it may be more relevant. 

Sunday, 29 September 2019

I WANT TO REGENERATE

Bonjour, 

This is going to be a short blog as I have been suffering with what could be yet another symptom of M.E. 

There are so many symptoms of M.E. that it feels like a whole system breakdown and not one part of the body seems to be exempt. 

Please take a look at my previous blog and poem  about the symptoms of M.E. 

I've also found as the years go by my symptoms change, some become less severe and some new ones appear. 

The latest in my long list of symptoms is the development of dry and itchy eyes. On doing a little bit of searching and asking others who have M.E. I found that experiencing dry eyes is a symptom that is often reported by people with M.E

Vision problems with M.E. are often reported and include 
  • Difficulty or slowness in focusing on objects, usually those that are close up
  • Not being able to see objects in side or peripheral vision — some say they feel as though they have tunnel vision
  • Feeling dizzy and not being able to tolerate looking at moving objects
  • Seeing floaters and flashes of light
  • Being intolerant to light — “They find it uncomfortable to be in brightly lit rooms and outdoors in the bright sunshine,” Dr. Rowe says.
  • Feeling as though eyes are dry or that they burn, itch, or feel gritty `
Anyway I'm well and truly fed up and after watching an episode of Doctor Who I've decided that I would like a new body and to regenerate like Doctor Who often does.  



It could be the answer to all my problems! 


Until next time and maybe a regeneration into something new - well I can dream!!! 

À bientôt
from the French Femme
xxx   

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