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Missing from our own lives

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This was the scene in one American city yesterday – just one city.
For a day of worldwide protest called #MissingMillions.
Update :
Photo removed – see notes in Replies section. Sorry for confusion.
I will try to insert another photo into this post – when I have the energy to work out how to do it. Not very good with tech stuff like this . . . !

The shoes belong to people with ME who sent them in. Or got someone to send them. (I didn’t even manage to do that.)
To represent the fact that so many of us with ME are not well enough to attend a protest. Even if it was on our doorstep.

We are missing from our own lives.

And from the lives of our friends and family. Even much of the time from the lives of our husbands, wives or partners.

We are pretty much invisible to the world.

I am exhausted after just following it on twitter yesterday.
To the extent that I haven’t been able to wash, get dressed, or eat any proper food today. Just snacks.
(But I have had many days where I have been much worse than this.)

I wanted to do this blogpost as it was a very emotional thing to see all the photos of empty shoes.
Incredibly emotional.
So many lives going to waste.
And I bet all these shoes only represent a small percentage of the number of sufferers.

It was uplifting too.
And I felt less alone than I have done in a long while.

Surely this will help society realise that we have a serious illness which is very disabling ?

And that we’re not just a bit tired.
Or having a nice sleep in bed.

I wish . . . .

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ME Awareness Day 2016 : Comments from sufferers

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I wanted to do something for today but am very lacking in physical and mental energy.
So I am just posting a selection of comments from people that I came across on Twitter.
I think these well describe the situation we are in.

“Many people with ME are suffering against a backdrop of ignorance and disbelief”
Sarah, England

“I’ve been ill for 10 years but was only diagnosed in 2014”
Amelia, UK

“If you phone the NHS seeking a doctor who has any knowledge of this illness, they cannot name one person. Not one”
John, UK

“Daughter has ME in UK and little support. GP commented ‘you’re not that bad are you?’  I told him he only sees her when she is well”
Person in UK

“People with ME doing exercise under medical persuasion have become bedridden and appallingly ill”
John, Scotland

“It is very sad that government have allowed an entire disease to go unchecked for 3 decades”
Kati, Vancouver

“I am only 31 and yet everday things like taking a bath exhaust me”
Mary, USA

“People struggle to comprehend the enormity of the situation of people with ME. It just seems too unbearable”
Nicola, UK

“Diagnosed with breast cancer. Astonished by reactions. Where were all you caring people when I was much more ill with ME/CFS ?”
Linda, Belgium

“I used to be ashamed of this, but I have almost no support. One friend. Daughter sees me once a month. Have severe progressive ME and alone”
Louise, Canada

“I know far too many people who’s loved ones see, disbelieve, make life hell for the person with ME. And leave”
Lindy, area not stated

“So many people have said to me ‘it must be great to stay in bed all day’ . Well No, it actually isn’t”
Female, UK

“Sat on the bathroom floor because I am too tired to dry myself”
Person in UK

“People close to us must also find acceptance : understanding that ME isn’t a mental block and we can’t just run it off”
James, UK

“I’m always amazed at the amount of people who aren’t accepting. The psychosocial view of ME invites judgment on the patient”
Henry, UK

“What does it say about our situation that we have come to EXPECT neglect, disbelief, unprofessionalism and dismissal from doctors ?”
ME Action Network,  Global

“I fought so hard to recover from my broken neck and become a triathlete and Advanced Personal Trainer, yet I cannot beat damn ME. Says it all”
Carmel, England

“I can relate to that. I survived a rare aggressive form of Non-Hodgkins Lymphoma,  but I cannot beat ME”
Female, UK

“Patients are left household, bedbound and even fed by tubes. We as patients have to raise awareness and funding alone for ME/CFS”
Jade, England

“And yet 1 out of every 4 people with ME have lower quality of life than people with heart failure, end stage AIDS, or stage 4 cancer”
Kit, USA

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