This is about me and M.E. (Myalgic Encephalomyelitis).
It`s about living with a chronic and invisible illness.
It`s how I express that life through my poetry.
Bonjour I have been inspired by so many people who have been taking up the Chilli ME Challenge and especially by the video posted today by Mama Chill
It has in turn inspired me to write a poem and encourage others to do the same.
The chilli is hot
The challenge is now
It's all for M.E.
But do you know how?
Make a video
And eat a chilli
No matter how hot
It's all for M.E.
Have your milk ready
To help with the heat
Your mouth is on fire
As it's no mean feat!
Share your video
For many to see
Let's spread the message
It's all for M.E.
So why are so many taking up this challenge? Because we need to do all we can to bring attention to the plight and suffering of so many with M.E. which can be a lifelong illness. We need to raise awareness and biomedical research funds One way we can do this is by making hilarious chilli-pepper-eating videos. Are you ready to take up the CHILLI ME CHALLENGE? A bientot From the French Femme xxx
Bonjour So here we are in the middle of Summer and many people are going off on holiday. For people with a chronic and long term illness, like M.E., it's either impossible or extremely difficult. Yet I recently planned and took a holiday by the sea. It was hard but I coped with all the demands thrown my way.
In a minute I'll share with you what I learnt and offer some advice from my experiences. But first I'll tell you why I took a holiday. Apart from the obvious reasons and why everyone needs a holiday, I feel that I must go on living despite having M.E. I've been suffering for some 12 years now, with relapses and good periods. I have gone through a grieving process for my past life, I've done tests after tests, I've tried lots of different approaches to see if anything improves my level of health and the quality of my life. I've learnt as much as I can about this illness. Now I have to accept that this is my life and continue living my life as best as I can within the confines of my illness. Yet deep inside I still feel that I am the same person and value my life all the same
Value
Now I value my life
Though nothing is the same
So much has been stolen
Yet here I still remain
How I value myself
This person deep inside
Although my life has changed
The real me is alive
Did I value my life
Before illness arrived?
I thought I was dying
But somehow I survived
Now I value my life
It's so precious to me
And I go on living
Despite having M.E.
So how to go on living with M.E.?
I'm not as serious disabled as some but with careful management I have found that I can travel and can go on holiday. I was recently inspired by this blog
Of course it depends if you have someone to help with travelling and planning a holiday. I don't have either so had to plan well in advance.
Here are my few tips that might help you
1) Look carefully at where you want to stay.
2) How easy is it to reach by public transport?
3) Do plenty of research beforehand. 4) Make lists and lists of what you need. 5) Pack slowly and don't leave it to the last minute 6) Make a note of all your travel plans i.e. times of buses, trains etc. 7) Consider your limits.How far and how long can you travel in one day? 8) Maybe, like me, half a day is more than enough to travel on public transport 9) Register as a disabled passenger and ask for help at all times. 10) I have a priority card which also comes in very handy. 11) Take with you plenty of fluids and dry snacks like nuts as well have any medications easily at hand. 12) Look at all your alternatives in case things go wrong e.g. taxi numbers. 13) If you are travelling alone tell others about your plans and have their contact details in case you need help. 14) Keep with you all information about your illness and any medications that you need. 15) Rest well before you travel and rest when you get to your destination and of course rest and recover when you return. 16) Above all pace, rest, relax and enjoy yourself. Now I know that I can travel and go on holiday. My life hasn't finished - yet. Of course it has changed and I get some funny looks when I ask for help as a disabled passenger. I suppose they assume that everyone who is disabled needs to use a wheelchair. Still I don't care because I have proof of my disability and I am not afraid to ask for help. I hope my blog will help you and inspire you to do the same. Bonnes vacances et bon voyage!! A bientot from the French Femme xxx
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Bonjour Comment ca va? I want to do a series of blogs about how are relationships are affected by being ill with M.E.
We change with this illness as we can longer function the same. So inevitably our relationships and interactions with others change. This first blog is about the changing relationship between partners, husbands and wives. Often there are breakdowns and break-ups. Some are fortunate to have all help and support that they need. Some become abused and isolated. Sometimes the partners are unable to cope with this illness and all the complications that arise. It must be hard for a loved one to see how we suffer, change and no longer well enough to share the same things. So many of us push ourselves beyond our limits because we don't want to let our partners down. There are so many expectations and demands on us. We start to feel guilty
Feeling Guilty
I’m
feeling so guilty
Because
I can’t help you
But I
don’t have a choice
There’s
so little I can do
I’m
feeling so guilty
This
illness is to blame
It’s
not really my fault
I’m
no longer the same
I’m
feeling so guilty
As I
depend on you
So please
don’t resent me
There’s
so much I can’t do
I’m
feeling so guilty
As I
rely on you
I
feel like a failure
When
there’s nothing I do
I’m
feeling so guilty
Since
I really need you
And
I’m letting you down
But
don’t know what to do
I’m
feeling so guilty
I
can’t cope without you
But I
appreciate
Everything
you do
Do you feel guilty? I think in the past I have often pushed myself so as to be with my husband and do things with him or for him. The problem is that if you don't say how you feel you end up making yourself worse. I think you need to be honest and open about how you feel. Tell your partner how you appreciate all that he or she does to help and support you. I think communication is important. Still I guess it's hard to avoid feeling guilty. Well on that thought I leave you until the next blog about our relationships A bientot From the French Femme xxx
Bonjour So what have you done in May to raise awareness? I took a bit of a back seat this year, for personal reasons. However I know there has been a lot of great awareness raising and initiatives during May.
I started the month with a blog and I'm going to end it with a blog. I just want to say that raising awareness needs to continue all year round and not just in May. But we need to keep fighting to gain the respect, understanding and treatment that we all need and deserve. On a personal note I have recently been made fully aware that, even when you have better days, think you have turned a corner and are able to do more it doesn't mean that you are on the road to recovery. M.E. is a remitting and relapsing illness. So don't be fooled like me and think you have beaten it. It has a way to surprise you and come back with a vengeance. It's waiting in the wings just to leap in and re-assume it's role in your life. So treat it with respect. Don't do too much when you start to feel better. I know it's easier said than done. We all fall into the same trap at times. Sometimes we have no choice as we have to deal with 'life' and all that comes along. For me the two strategies that help are rest and pacing. The problem is that it can be a life long illness for some and it's so hard to manage. I do believe that there is some hope on the horizon, especially for those young or newly diagnosed. I try to remain optimistic but of course there are days when that's so hard.
OPTIMISTIC
One day
Some one
Will find
A cure
And I
Will be
Healthy
Once more
So hard
To be
As years
Go past
To hope
That I'll
Be well
At last!
In the meantime I will continue to raise awareness and understanding through my poetry. I am well on my way to another book of poems about M.E.
So watch this space!
I hope you will join me in the continuation to raise awareness and understanding. Every little helps. Why not share this picture so that others can have some idea of what it feels like to have M.E......
And of course you can share my poems and my blogs.
Today is May Day. Here in France it’s called La Fête du Travail or La Fêtedu Muguet. It’s a public holiday. The French greet each other with
a sprig or small bouquet of Muguet (Lily of the Valley), a flower that is
considered a lucky charm. The tradition dates back to the beginning of the
century.
Today is also the first day of a month of International
awareness for the spectrum of illnesses called Chronic Immunological and
Neurological Diseases which includes M.E.
May 12th is International Awareness Day. You
can read more about it and my poem dedicated to that day in my previous blog.
This sort of awareness raising takes its toll on those
like myself and others who already face the challenge of living with a long
term chronic illness like M.E.
So this year I am taking a step back. I also have personal
reasons which need my attention. So sadly I’m unable to contribute at the same
level.
Yet I encourage others to take part in awareness
raising, even in some small way. Every little effort helps.
Please feel free to use and share any of my poems or
blogs which you can find here and on my face book page.
Some of my poems have been wonderfully illustrated by fellow
sufferers and convey very powerful messages about what’s it like to live with
M.E.
You can also buy my book and share with others to help
raise awareness and understanding.
It's available worldwide but here are some of the links on Amazon
Well at last we have reached Spring and here today in France it feels like we have skipped Spring and gone straight into Summer! I have difficulties in adjusting to temperature changes and the seasons, especially if sudden and dramatic. Do you?
Sudden changes in temperature are known to bring on a relapse of ME in some cases. 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.
'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'
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. The body is unable to regulate temperature and changes.
Then, to make matters worse, I entered into the menopause and all the night sweats started. 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. That's so difficult to manage.
I fare better in a warmer dry climate and don't do very well in the damp and cold. I know some people are totally unable to tolerate either hot or cold. Which do you prefer? So how do you cope with this aspect of M.E.? I have learnt to always have many layers of clothing which I can add or take off. I try to avoid the extreme climate changes. I try to be more aware of what will make me feel worse and avoid situations that will only exacerbate these symptoms. If possible change your location and see if that helps.
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?
Of course the benefit from sunshine is to capture some vitamin D. So I think I'll just take a walk out in the sunshine.....................
As a life long Star Trek fan I have to dedicate this blog to Leonard Nimoy who died on 27th February 2015 and who is best known as Spock in the original series of Star Trek. It was a sad day.
Spock was half human and half Vulcan and was often struggling to keep control of his emotions and to apply logic at all times. I guess at the moment I too am struggling to use my logic and common sense to make the best decisions for my health and to plan for my future. Yet at times I find myself a victim of my emotions and in danger of slipping backwards. Perhaps you face the same dilemma.
What a week it's been. It started well enough with a feel that Spring was in the air, a pocket of energy and a sense that I was at last turning the corner. It was short lived because as usual the post exertional malaise kicked in for a few days.
At the end of the week I heard the news that Leonard Nimoy had sadly passed away. Not long after that I also heard that the offices that I worked in for over 20 years had been demolished. What next? I felt as if my past life was crumbling away. Then on Saturday morning I awoke to some good and promising news.
'Distinct changes in the immune
systems of patients with ME or chronic fatigue syndrome have been found, say
scientists.
Increased levels of immune molecules called cytokines were found in people
during the early stages of the disease, a Columbia University study reported. It said the findings could help improve diagnosis and treatments'
Could this be the breakthrough that we have been all waiting for? There is hope, although this is not the first time we have been down this road. So I wait to see what happens next.
The other news that has been reported on a lot in recent weeks is the IOM report Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: redefining and illness and the proposed change of name to S.E.I.D Systemic Exertion Intolerance Disease. It has resulted in an outpouring of response and some further controversy - especially about the name. You can read about it here.
I've been contemplating how I can write poems in the future about such a ridiculous name. Anyway here's my first poem
What’s in a name?
This chronic illness
Has more than one
name
What shall I call it?
Is it all the same?
The name keeps
changing
It once was M.E.
Then came CFS
Now SEID it could be!
So what’s the best
name?
SEID or CFS?
I prefer M.E.
Out of all this
mess!!
So this blog is a mixed one with a lot to contemplate.
All that remains is to leave you with the famous words spoken by Spock
'Live long and prosper'
And Chekov says to Kirk
"Course heading, Captain?"
Kirk replies
" Second star to the right .......and straight on till morning"
