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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