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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