If you take one thing away from being on my page I hope it’s that you see that a different and a hard life doesn’t automatically equal a bad one.
I want people to know life can still be good. And not in a ‘hashtag inspirational’ “You Can Do Anything You Set Your Mind Too So Don’t Let ME/CFS Stop You” way. Massive eye roll at that frankly ridiculous approach.
This illness is going to rock the very foundations of your life. That is inescapable. But buckle up and know that every rollercoaster comes with highs and lows.
The content of my posts will sometimes feel heavy and negative, simply because I’m talking about something that is heavy and something that has had such a negative and far-reaching effect on my life.
There must be an acknowledgment of the ugly bits to be able to appreciate the slither of a silver lining that can come with this way of life; a slower life can come with a newfound appreciate of the every day and the once mundane.
My life is not all sunshine and rainbows, but isn’t all awful either. Just like everyone else’s lives I suppose, but when people see my life it is often pity that they feel first, and then ‘inspiration’ second for someone who is still smiling “in spite of it all.”
I want them to know that, if their health doesn’t return like mine never did, things can still be okay. Not all day everyday. Not without hardship. But that there can be pockets of joy in amongst the symptoms and the far-reaching effect those symptoms have.
My life is not Bad; it is Hard.
I feel almost guilty(?) that those new to chronic illness might see that I’m still so ill after over a decade and lose all hope. I’ve learnt that hope does not need to be centred around recovery or progress. Hope can be for happiness, acceptance and contentment. Hope can be for learning to mould a new life for yourself.
My life has the potential to have so many Firsts; the first time I ride a bike again, the first time I go to the cinema again, the first time I drive myself round the corner to see my brother. They might not happen, but they also might. There’s hope there but not an unrealistic obsession with it that means I can’t be happy unless those firsts happen again.