Hope and Happiness Within the Storm....?

I've shared videos by Daisy before, which are always really inspiring and moving. She really knows how to straight talk, and how to talk from the heart in a way that can really reach people and show them the reality of the lives we lead, normally hidden away from view.

This one had quite a significant affect on me. I've really been struggling to cope emotionally recently. It's not really so much the disease that's been getting me down - though of course that's always a factor. It's more everything surrounding it. All the battles over healthcare, benefits, rights. All the prejudice, ignorance and hatred towards us. The way the system just doesn't 'fit' to our needs, and how much sicker that can end up making us. (Example, no GP home visits despite being bedbound) Hope can sometimes be extremely elusive when you're stuck in the middle of all that, at the same time as dealing with the daily pain of being seriously ill, and everything that brings.

Daisy, I'm sure, has as many bad days as me. I'm sure she has times where she just can't find the will to fight for hope. But like I have again and again during the course of my illness, she eventually fights her way back. In this video, created for the 'Britain in a Day' BBC project, she talks about finding a way to find happiness & beauty inside of this horrible, difficult bubble we live in. Coming from someone so young, (17) that almost makes an even stronger impact than it would from an adult. And she's right ... it really does come down to finding that 'do or die' attitude, to working our butts off to find what small happinesses and controls that we possibly can in our daily lives. And to not let all our possible futures cloud the present too much. I need to re-learn that ... and I sort of feel like this (and a couple of other things that have happened lately - see my last post, 'Can we Transform Pain & Despair into Beauty') are maybe a turning point to drag myself back up to a place of coping.

There can be beauty even in massive destruction!

So, here's Daisy's video. Share on, wherever and with whoever you can!!!

But living a life of regret would have kept me looking backwards, rather than forwards. Hope is forward leaning. It’s the ripple of energy that trusts there are resources enough to live into the future. I had to focus on what I could do, not what I could not. ~ Julie Neraas ~

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Hope and Happiness Within the Storm....?

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'Voices From The Shadows' Trailer

One of the best books I've read, in terms of really expressing what life is like for people with severe ME, is Lost Voices From a Hidden Illness, which tells the stories of many different people with ME, & their friends, families, and carers. It's beautifully made, looking very much like a coffee table book, illustrated with images of those telling the stories - each picture telling as much of a story as the actual text. It was produced in conjunction with Invest in ME, one of the leading UK charities for ME. If you have ME, or care for someone who has, I highly recommend investing in a copy of this book and passing it around to friends and family to help them understand more about what you're going through!

I found out this week that coming soon is a 'film sequel' to Lost Voices - Voices From The Shadows. I wanted to share the trailer with you here. I'm quite excited about this film, and have high hopes that they will yet again produce a powerful tool for ME advocacy and awareness!

Voices from the Shadows Trailer from Josh on Vimeo.

Isophia.com describes the film in the following way :

‘Voices from the Shadows’ (is) a documentary bearing witness to the devastating consequences of psychiatric prejudice and medical ignorance about one of the most prevalent illness of the 21st Century.

Hidden away in darkened silent rooms for years, even decades, men, women and children are suffering a vicious injustice. Although shockingly ill, many are disbelieved, blamed and suffer medical neglect and even abuse by professionals. Deception and obfuscation have been used to deny the horror of their plight.

The isolation imposed by this severe illness means that the daily reality of these sufferers lives remains invisible. They are too ill to make their voices heard, and few professionals are willing to risk damaging their careers by speaking out to protect them.

Biomedical research has been stifled, so prejudice and misinformation have become widespread. Irrevocable harm is still being caused by inappropriate ‘treatment’. At last international research is highlighting this travesty, but in the UK it could be many, many years before change occurs. Meanwhile, lives are being destroyed and children and young people are particularly vulnerable.

This is a profoundly moving, poignant and disquieting film by two patient advocates/carers. It shows the love, enduring courage and determination of those who bravely strive to be heard as they fight for health and respect.

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

'Voices From The Shadows' Trailer

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High Hopes for Feature Documentary 'What About ME?'

I still have high hopes for this feature documentary, which is currently in production, & plans to investigate Myalgic Encephalomyelitis, and all the politics, research, & intrigue around it - not to mention the terrible history of abuse M.E. patients have had to suffer over the years.

There will apparently be a chance for people to share their stories, soon - keep an eye on the What About ME website, or their Twitter feed.

Check out their latest teaser trailer now :

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

High Hopes for Feature Documentary 'What About ME?'

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