Wednesday, 1 April 2020

Pandemic v M.E.

Bonjour, 

At the moment I'm reading and hearing a lot about how 'normal' people are coping with this recent confinement because of the coronavirus. There are all these wonderful ideas and proposals to help with confinement and self isolation. Of course for them it's only temporary. 

BUT for those of of us with M.E. or any other long term chronic illnesses the situation is permanent. We live in a whole different form of isolation. 

My friend Shirls Chapman has written a great poem comparing the current pandemic versus M.E. 

Pandemic v M.E.

Welcome to my world
All you normal happy folk
Welcome to my life
No this really isn’t a joke
In the days of this pandemic
Self isolation and doubt
This is how I live my life
Day in and day out


You are raring to go
As you do your morning burn
Your creative brains on fire
As you paint then pose and gurn
You put it all on Instagram
Looking for applause
We get washed and that is it
We can’t even manage clothes


Yay, you made it to week three
Now you’re getting really bored
Your ideas have all dried up
Your workout has been floored
You can’t be bothered getting dressed
All your roots are showing through
Try doing this for twelve years
Can’t imagine it, can you?


Shirls Chapman

I have also written many poems about life with M.E. and in this blog I will share a couple of recent ones. 

As full recovery from M.E. is rare it's like we have been given a life sentence.  


Our confinement and self isolation is so completely different from what many healthy 'normal' people are experiencing right now. 

Healthy 'normal' people can not imagine what it's like to live with M.E. 
Only those who suffer the same can empathise. 
 

So we have no choice but to live with this illness and adapt. 

Please feel free to share my blog and poems - especially to healthy people!! 

À bientôt

from the French Femme

xxx   


Monday, 23 March 2020

CONFINEMENT

Bonjour, 

In the last week I've heard phrases like 'we're at war', 'a new life for the french people' and 'I've lost my freedom'. All because of the coronavirus. Many people around the world are now confined to their homes and practising self isolation. 

I say in response 'welcome to my world'! 

Some people don't know how they will cope for the weeks of confinement and isolation. Try living like that for years!! Those of us with M.E. have had no choice but to adjust and learn to live in isolation. We've had no choice but to change our lives. We've had to accept all the changes that come with illness. Those with severe M.E. are not only confined to their homes but to their beds.  

So now many are having a small taste of what our life is like. 


   
Many years ago I wrote a poem and blog about being isolated. You can read it here 

So not a lot has changed for me in recent weeks. I have lost the little face to face contact that I sometimes had. I have lost my cleaner as I don't want to take the risk. This means I have to cope on my own. Even the small tasks can be exhausting. For me and so many others with M.E. it's a battle just to survive day after day. It takes all my energy and force to just keep going. 

Of course some of us with a long term chronic illness like M.E. become depressed. And I'm sure that those who are newly confined may start to get depressed and not know how to pass the time. 

After many years I've become very resourceful in keeping myself occupied and to fight off depression and boredom. Also some years ago I wrote about being bored and suggestions on how to still have a meaningful and interesting life despite illness. I can no longer pursue all the activities that I used to love but I still have a life and value it. You can read my blog here   

Of course when confined and isolated it's akin to being in jail. Sometimes I yearn to escape and go out into the fresh air and take a lovely long walk.  


In a way I feel angry when someone complains to me. I become angry when they don't realise that I'm more vulnerable as I have a neurological condition and at higher risk. 

There are some excellent blogs and information available for people with M.E. and I will give you some links here in my blog 

M.E. International blogs

UPDATED 3/21/20 People with Myalgic Encephalomyelitis (#pwME) are experienced at dealing with a dysfunctional immune system, which includes social distancing and avoiding viral infections.  We could teach the world a thing or two about how it's done ... if only they'd listen.  We will try to update this blog as additional information comes to light.

#MEAction 

We have created a COVID-19 page on our website where we gathered helpful resources for you. Please bookmark it and check back as wekeep it updated. This is a resource for those with ME and also helpful to other chronic illnesses and disabilities IT SHOULD NOT BE YOUR ONLY RESOURCE. Please follow your local health authority for the most up-to-date information specific to your location. While not your only resource, we do hope it will be one that helps you wade through the information and find what applies to your life as a person with ME or care giver to a person with ME. 

Occupy M.E. 

Safety in isolation 

So stay safe and stay informed. Don't take any risks and ask for help if you need it. 

À bientôt

from the French Femme

xxx   



Thursday, 20 February 2020

NORMAL - what does that mean?

Bonjour, 

As I enter my 16th year of being ill I really can't recall what it's like to be 'normal'. 

Sometimes I talk to friends who have a 'normal' life and it reminds me of what I'm missing. 

I have a new normal

I wrote this poem a few years ago and it not only applies to me but to others who suffer with this illness M.E. 

At least I had half a life before I became ill. I did get married. I did have a child. I did have an interesting career. I did enjoy lots of activities and a social life. 
BUT for so many especially those who become ill at an early age all these things are denied. All hope seems to be gone. All dreams forsaken. This is so heartbreakingly cruel.    




Normal
What does that mean?
To me that’s only in a dream

To sleep
The whole night through
Five hours is the best I can do

At work
Five days a week
Of that I can no longer speak

Career
This started well
Now it’s all shot and gone to hell

Shopping
A happy event
Perhaps an exhausting hour spent

The pub
A beer or two
But alcohol is now taboo

Visit
My family
Is always difficult for me 

Talking
On phone with friends
With mental fatigue it soon ends

A walk
What a pleasure
Hundred metres is my measure

Bike ride
Down country road
Instead my bike is better sold

Romance
And chance for love
Instead I look to heaven above

Marriage
One of my dreams
Now that is unlikely it seems

Children
A hope one day
What chance now I am forced to say 

Normal
What does that mean?
Hope lost, life wrecked, a broken dream.............!!!


Sometimes I like to pretend that there's nothing wrong with me. I like to pretend that I'm normal and healthy. It doesn't last long of course! 

It's sometimes easier when I meet new people to pretend that I'm 'normal'. 

It's easier than trying to explain what's wrong with me. My illness is not easy to explain, it varies so much and there are so many symptoms.

The only people who can truly understand are those like me with the same or a similar illness.  




Do you also like to pretend you are normal or are you so ill that it's impossible? 

Of course there are times when I feel worse and then it's very apparent that I'm ill. 

Anyway I can always dream and hope that one day I'll have my life back and be 'normal' once again. 


À bientôt

from the French Femme

xxx   





Tuesday, 28 January 2020

RELAPSE

Bonjour, 

As this is my first blog of 2020 I want to wish you all a Happy New Year and for one of better health. 

Sadly I've been in a relapse since christmas day. It's the worst for a long time and is probably because of a number of reasons. So I've been reviewing and trying to learn from my recent relapse. I hope the following guidelines not only help me but you as well. 

What is a relapse? 

Very often people with M.E. say and feel that they have gone into a 'relapse'. 
The terms 'flare up' or 'crash' are also used 
Some say that a flare up is a worsening of symptoms for a few days; a crash by some is considered a temporary shift of baseline activity which could last from days to weeks; a relapse seems to be more severe and seems to be when things have shifted so much that one is unsure of ever improving again or not and there's a completely new baseline going back to where one was in the past. This relapse may last for years.  


So what causes relapses in M.E.? 

Some relapse triggers are 
  • overactivity 'living outside the energy envelope', sometimes as a consequence of a life event
  • poor sleep which can intensify symptoms
  • a secondary illness or infection 
  • stress of some kind such as emotionally charged events, financial problems, family conflict or a disability review
  • do not ascribe all new symptoms to a relapse and seek a medical opinion if possible as you may have developed another treatable condition 
  • more than one trigger could result in a severe relapse
How to manage a relapse 
  • take extra and prolonged rest and listen to your body 
  • go to bed, lie down, draw the curtains and maybe practice some deep breathing
  • postpone, delegate or eliminate tasks 
  • ask for extra help and support in order to remove all stresses (physical, mental, emotional, intellectual)
  • let go of unnecessary and unimportant things 
  • talk to someone who may be helpful and supportive 
  • make sure as far as possible that you are prepared for any relapse e.g. have a large supply of food and medication 
  • arrange your bedroom so that you have all that you need close at hand 
How can we recover from a relapse? 

  • be patient and do not resume a normal activity level before your body is ready as this could lead to another relapse
  • return gradually to your normal level of activity 
  • do not despair as by surviving a relapse you will learn about self-management and how to avoid a future relapse
How to limit or avoid relapses
  • identify relapse triggers 
  • pace yourself
  • schedule rests on a regular basis 
  • keep a health log
  • accept your limits and lower your expectations
  • learn to listen to your body
  • be assertive and put yourself and your needs first
  • time alone can reduce stress and recharge your batteries
  • find some activity that you can enjoy 
I don't have all the answers and sometimes a relapse can happen suddenly and without warning, as was the case for me this time. 

I am slowly recovering and improving my baseline of activity but have pushed myself to write this blog as I want to help and warn others. 

This photo is a before and after my relapse. I'm sure you can see the difference. 





RELAPSE

I’m in a relapse
I feel like I’m dying
I’m confined to my bed
and I can’t stop crying
I’m in a relapse
it’s all so frightening
all my energy gone
and hard to keep breathing
I’m in a relapse
my head is just splitting
it makes me feel so sick
each time I try moving 
I’m in a relapse
all symptoms worsening
somehow I must survive
despite how I’m feeling
I’m in a relapse
it’s a dreadful feeling
there’s nothing I can do
but to keep on resting 



Well that's more than enough for now! I need to go and lie down. 

À bientôt

from the French Femme

xxx   



Tuesday, 10 December 2019

LOSS

Bonjour, 

Many years ago I wrote a poem entitled 'LOSS'. It was in the early days of my illness and when I was at my worst. It's one of the longest poems I have written and is true and straight from my heart. Maybe you can identify with some or all of it. So much loss comes along with a long term chronic illness like M.E.  

I think my poem says it all 



Loss

I`ve lost so much
The life I knew
Illness to blame
Must start anew

I`ve lost my job
And career too
No hope for me
What can I do?

Now my lifestyle
Can`t stay the same
With no money
It has to change

My house is sold
I `ll have no home
So where to go?
As yet unknown

Soon to lose my
Security
Which then causes
Anxiety 

Family and friends
All stay away
Don`t understand
Or what to say

Loss of freedom
To go outside
Home a prison
Where I now hide

My social life
Does not exist
So many names
Crossed off my list

As for hobbies
I can`t pursue
All pleasure lost
In what I do

No longer have
The energy
Or cognitive
Ability

No stamina
Get up and go
No endurance
Or libido!

I`ve lost control
Of my body
All function gone
Such a worry

Memory loss
The wrong words used
Names forgotten
Or they`re confused

Concentration
Hard to maintain
Brain fog blocks me
And clouds the brain

Loss of balance
With dizzy head
So hard to walk
Prefer my bed

Loss of some weight
And appetite
Feel sick and weak
Stomach not right

I`ve lost all hope
And what I dream
My purpose gone
With self esteem

I`ve lost my faith
In so much now
I want to pray
But don`t know how

I`ve lost my life
The will to live
Feels like the end
No more to give






I'm sorry if this blog and my poem causes upset and distress to anyone but the truth must be told. 

The suffering and my loss and that of others still goes on today. 

À bientôt

from the French Femme

xxx   

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