Saturday, 14 February 2015


Last week I turned twenty five. As I sat opposite Jared in Wagamama and read the menu unassisted, I was hit by just how far I had come in the year since I celebrated my twenty fourth birthday. In the last month alone, I have read several books, attended almost three full days of a course with the Prince's Trust and spent time with friends both in and out of the house. None of these things have been easy and I've had poorlier days as a result of them, but I have managed. Something that would never have been possible 12 months ago.

This lovely realisation got me thinking about how I very rarely talk about any progress I make and how even just the thought of doing so can leave me feeling uneasy. When I've tried to work out why this might be, I've not been able to pin it on one thing in particular. It more seems to stem from of a confusing muddle of internal and (potentially imagined) external pressures.

For one thing, there is my acute awareness that ME/CFS is a fluctuating illness. I think, in part, it is a fear of jinxing myself and inciting a flare-up which puts me off talking about progress. I find allowing myself and others to be excited about me regaining lost abilities very daunting when I know there is the overhanging possibility they may taken away again at any moment.

There is also the issue of the perceptions and expectations of others. Living with a condition as readily dismissed as ME/CFS, there seems to be a constant need to demonstrate just how debilitating it can be. When the condition is underestimated at its worst, I find it frightening to imagine how skewed people's perceptions could be when they hear of even small improvements.

On top of this, there is also the little bit of me which can't help but wonder why I should get back small aspects of my pre-illness life when others in similar situations, friends I've made with chronic illnesses, aren't currently able to.

This all being said, these niggles only occupy the corners of my brain and the biggest part knows how important it is that I do start to acknowledge and celebrate progress whenever it happens, however fleetingly it lasts. Improved functioning is a privilege not afforded to everyone and therefore not something to be taken lightly. Looking back and taking stock of the milestones I have met between my bad days, I feel incredibly grateful.

So while I won't be yelling 'I'm getting better!' from the rooftops, I've decided to let myself and others in on the fact that there is some progress and reason enough to feel quietly optimistic about what the future holds.

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Friday, 13 February 2015


Recently, in attempt to make the very most of my clearer-brained house-bound days, I have been dipping into TED talks.

In this post, I have compiled a list of seven 18 minute of less talks which I've found particularly uplifting and inspiring in my current circumstances.

In no particular order:

Janine Shepherd: A broken body isn't a broken person
- Whilst training for the Olympics as a cross-country skier, Janine Shepherd was hit by a truck and left paralysed. She explains how she came to realise that while her body may be limited, her spirit is unstoppable.
- Take home message: You are not your body. Giving up old dreams can allow you to discover equally wonderful alternatives.

Brene Brown: The power of vulnerability
Brene Brown discusses her findings about human connection and our ability to empathise, belong and love.
- Take home message: There is power in embracing vulnerability. In doing so we free ourselves up to fully feel joy, gratitude and happiness.

Aimee Mullins: The opportunity of adversity
- Aimee, a paralympic athlete, seeks to defy the negative associations with the word 'disabled'.
- Take home message: Adversity opens the door to human potential.

Jodi Ann Bickley: Changing Directions - Stepping Back from the Kerb
- Jodi Ann Bickley, who suffers from ME/CFS post-brain infection, shares her heartwarming story and explains what led her to found the One Million Lovely Letters project
-Take home message: Kind words can be powerful

Maysoon Zayid: I got 99 problems... palsy is just one
- Comedian, Maysoon Zayid, talks about her experiences as an actress, stand-up comedian, philanthropist and advocate for the diabled
-Take home message: If I can can, you can can

Neil Pasricha: The 3 A's of Awesome
-Neil Pasricha  writes a blog called 1000 Awesome things where he documents life's simple pleasures. In this talk he explains how he came out of a low point in his life by focusing on the 'three A's of awesome'
-Take home message: We all face difficulties but it's how you come out of them that counts. Channel your inner three year old. Be authentically you.

Caroline Casey: Looking past limits
-Activist, Caroline Casey, starts this talk with an extraordinary revelation. She goes on to encourage us to challenge perceptions and look past the limitations we may think we have.
-Take home message: Being absolutely true to yourself is freedom

Do you enjoy watching TED talks too? Do let me know your thoughts on any of the above videos in the comments. I'm always looking for new things to watch / learn from, so if you have any recommendations, send them my way!

More TED talks can be found at

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