Home

Death of another ME sufferer

8 Comments

image

I wanted to do this post about the very sad death of Jodi Bassett who was a long term sufferer with Severe ME. Probably Very Severe ME.

She died on 11th June 2016.
She was just 40.
She had suffered from Severe ME since she was 19.

She created an amazing and comprehensive website called The Hummingbirds Foundation For ME.
http://www.hfme.org.
To help others.

I think this was mainly done from her bed as she was so ill and disabled by her ME.
To quote from her website, its purpose was :

” Fighting for recognition of ME. And for patients to be awarded the same basic human rights as those with similar neurological diseases such as M.S. ”

I’ve only been able to read tiny bits of the site because of my own symptoms being bad a lot of the time.

Jodi explained on the website

” I’m 100% housebound and 99.5% bedbound.
Yet like so many other ME sufferers I have had to fight so hard just to try to get even basic help and understanding from doctors, friends and family members ” .

That sums it up really.
The almost impossible position that people with ME are in.
We have to fight so hard for anything.
But the exertion makes us even more ill.
Such a vicious circle.

I’ve given personal examples of this throughout my blog.

The news about Jodi’s death I read on twitter. Where I get most news.
There were many tweets about it on Twitter.

People were very saddened by the news.

In the meantime I wanted to help raise awareness. 

And express my sadness for Jodi and so many others who have died.

R.I.P Jodi

Advertisements

#MillionsMissing – another photo

1 Comment

image

Following on from my last post on the #MissingMillions day on 25th May 2016.
Here is another photo taken on the day of a lot of empty pairs of shoes that were sent.  This was in one of the American cities.

I just could not work out how to add this photo into the previous blogpost – in place of the one I deleted. Which would have been better.
I realise it is probably very simple when you know how . . .
But I struggle a lot with using any tech things like tablets, mobiles, laptops, etc. So many ME symptoms get triggered off, or made worse.
Hyper-sensitivity, electro sensitivity, or whatever . . . In any case, it can make simple things difficult and painful to do.
Just sending text messages can be torture even with my smartphone’s brightness on the absolute lowest setting.

Anyway, I’ve probably mentioned this before.  But just to explain why I have done another blog post just to correct a photo.

Making a meal of something that ‘should’ have been simple . . . .

Jamison Writes

Not Like The Whiskey

Rosa Rainbows

Rosa Rainbows ~ Living with and raising awareness of M.E and Lupus, the crafts that I do, reading books and cute fashion :)

Utting-Wolff Spouts

Encompassing the natural and social sciences, politics and social justice issues

A Prescription for M.E.

My blog from the intersection of patient & pharmacist

Ordinary Miracles

This blog is my story about a life forever changed by chronic illness. I hope you'll laugh and cry with me as I try to make sense of it all. Oh, and nothing I say should ever be construed as offering medical or legal advice.

Not Mid Morning Matters

JD in the Morning, off air...

Stress Management Coach Jayne Cox | Live the Life You Want

ANNE DEAN : My journey with ME - a long one and still ongoing. But I will get there. Comments, thoughts & general rants.

Lesism

The greatest dreams are achieved with open eyes and a conscious mind...

Thoughts About M.E.

Myalgic Encephalomyelitis (M.E.) Advocacy

ANNE DEAN : My journey with ME - a long one and still ongoing. But I will get there. Comments, thoughts & general rants.

Heroes Not Zombies

becoming not being.......

Two Rooms plus Utilities

ANNE DEAN : My journey with ME - a long one and still ongoing. But I will get there. Comments, thoughts & general rants.

Jayne Cox

Specialist Women's Coach

Dead Men Don't Snore

Learning to Live with Chronic Illness

valerieeliotsmith

Law and health; due process and civil society

Chronic Fatigue Survivor's Blog

My experience recovering from Chronic Fatigue Syndrome (CFS/ME)

ANNE DEAN : My journey with ME - a long one and still ongoing. But I will get there. Comments, thoughts & general rants.

ANNE DEAN : My journey with ME - a long one and still ongoing. But I will get there. Comments, thoughts & general rants.

The World of Northern Bay Girl

My World, My Life, My Blog