2 years ago I was diagnosed with a rare and incurable illness.This is my story, my journey and my humorous coping mechanism.
I had no idea that I would lose control of my life before turning 30, so certainly didn’t make any plans, mentally or otherwise. Now a regular at the hospital rather than the pub, my life has turned upside down.
Those who are closest to me, with the best will in the world, sometimes don’t understand what I am facing or how I am feeling; so how can I expect the rest of the world to? If I can raise awareness/understanding, or if I make you laugh then my job is done.
A little less shouting out and more an open letter. I know the past few years have tested us both and I won’t ever forget the way you literally crumpled at the news that Christmas. I have come to realise, however, that we are being torn apart, when more than ever we need to stick … More This Is A Shoutout To…
Maybe it’s funny in a rich man’s world, but in my Wegener’s World it’s actually pretty painful. One appointment has racked up nearly £100 in travel alone and that was the less expensive option. Usually I would book myself in to a suitability delightful hotel the night before my Hammersmith appointment, however today I did … More Money Money Money
As I reach the 2 year mark since my grand return to the hometown, the changes, especially physical, that the Wegener’s has demanded from me are beginning to weigh me down like an unwanted sandbag. I used to run. Believe it or not. None of this cross country marathon business like proper runners, but I … More Ch Ch Changes
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journeytothecure 