To the carers

Recently I was out (yes, really!) and I got a taste of how these past few years must have been for my family and friends. My cousin wasn’t feeling very well and I was worried about her. There were practical considerations like making sure she didn’t have too far to walk from the car and was she warm enough? Should we leave soon because she seemed to be starting to flag? The fussing probably drove her mad but it was so painful to see her like that; not herself. I was only with her for a few hours but that was enough to see how hard illness can be for all involved and not just the sufferer. 

I have two younger brothers and an older sister. Their role has changed because of my being ill. Their lives have been affected as well as mine. During those wretched Dining Room Days the boys wheeled me to the bathroom and then back to bed. My sister brushed my hair for me and helped me get dressed. She even offered to throw on her bikini and come in the shower with me! That’s true love. 
August 2010 – within a couple of weeks all of our lives would change
They all make me drinks, carry my dinner upstairs when I am stuck in bed, buy me things to make me smile, babysit me so my parents can go out or go away for the weekend, stop using their scented candles because the smell triggers a crash for me, turn down their music or the TV so it isn’t too loud for me, manage to smile and console me when their birthday meal has to be cancelled because “Anna can’t manage it today”…
Feb ’12 with Not-so-big sis. December 2011 with Practically-Older bro. December 2011 with Not-so-little bro.
And my parents.How can I put it into words?
My dad is very good for hugs! He tells me constantly that he would swap with me in a heartbeat. He takes me for drives just so I can get out and see the snow in the Winter. He offers to take me out for coffee and every single time I have to say no because I can’t manage it, but he never stops offering. He always, always wants to help; to do anything and everything that might make things easier for me. 
November 2011 with my dad

My mum…words just can’t do her justice. 

She was there with me at the hospital when the neurologist diagnosed me. She was there when I had to go to the dentist for a check-up and I started to crash in the waiting room. She is the one who brushed my teeth and dressed me during The Dining Room Days. She is the one who came with me to my ATOS medical assessment. She is the one who the GP accused of hindering my recovery by caring for me. She has filled in every benefit form I have been sent. She is there during every relapse and every setback and to wipe every tear that rolled down my cheek… She is the one who is with me the most; the one who sees all of it and never, ever complains. When I was 11 we had to write about our idol for a school project. I was right to choose my mum as mine. 
August 2013 My camera shy mum

I can’t write anymore. It hurts too much to think about it. But they, the carers, don’t have the luxury of forgetting do they? For them it is constant. They cannot leave because we need them. They can escape for a few hours if there is someone else to come and babysit me but they have to comeback afterwards. I wholeheartedly believe that this ‘ordeal’ is harder on them than it is on me. 
‘Thank you’ doesn’t quite cover it does it? I have only made progress because of them. They allow me and encourage me to concentrate solely on recovery. They take care of everything else. They are the reason I keep going. They are reason I will never give up. I owe them everything. 
This isn’t what I want for me or for them. It makes it even more heartbreaking to be told things like “it’s time you got better so that your family can get their lives back” and by your family GP no less.

To all the carers,

We couldn’t possibly do it without you. 

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