Triona's Poem

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In answer to the question “How do you feel when you suffer from Lupus?”

Imagine what it feels like when each and every breath hurts
There’s a stabbing in your lungs - it brings a sharp reminder that something is wrong
You can’t sleep at night as you track the fierce pain that travels across your chest, up into your shoulders, neck and arms
You wonder if it’s your heart and whether you should call an ambulance
But you tell yourself off for over-reacting and sink into a troubled slumber
You wake an hour later drenched in sweat, shivering and scared
Morning cannot come too soon
Imagine when your lips tingle like they do when you’ve eaten a hot curry but you only had shepherd's pie for tea
When your hands and feet are frozen and numb, like you’re wearing thick gloves and socks- they’re clumsy and useless
They turn purple then black like those of a corpse
You stand in a piping hot bath but don't feel the burning sensation until the water gets ankle deep
When your ears ring so loud you can't hear the phone
Or when your eyes and head ache so much you look at the bottle of painkillers and think of taking them all in one go
Think what it must be like when the flight of stairs is so daunting you might as well be climbing Killimanjaro
Or when you are thirty years old but you hobble around more like you are seventy
Worse still is that no one can see your pain- it is invisible
You feel a different hurt when doubt colours the faces of those you love
What about when you lie trapped in bed in the early morning
Listening to your young children getting themselves ready for school because ‘mummy isn’t well again’
Your head plans the busy day and tells your body to get up, but your body won't respond
You feel as though an elephant is sitting on you and you cannot move
And all the while you desperately want to move
You want to feel good and have your strength back again
You long to be reunited with your old self
The person who had it all and still had enough energy left to want more
The harsh reality is you cannot do all the things you used to
And your old self has gone
But hope has not
And the void has been filled with a new self
One who has learnt to fight the terrorist within
Who is wise enough to enjoy the good days and brave the bad
Imagine learning to dance with the devil
That's the answer to ‘how do you feel?’