My Secret Life – M.E/cfs kids and motherhood

Having two lives, one of which you do not want other’s to know about. The life that everyone believes is your “true” life is one of complacency and subtlety, one in which the person is generally unassuming. However, in the second, “secret” life, the true essence of the person is displayed, and is generally only revealed to close family and friends.

I am leading a double life.

Each morning I get up, my make up goes on and I leave the house to do the school run.  I make small talk in the playground with friends.  Go to coffee once a week with a group of mums.  I smile, I am interested in their lives.

It’s important to me that I’m a good mum, friend, sister, daughter.  My house is usually clean and tidy, dinner cooked, (all fresh and gluten free), the bills are paid, we have a decent car.  From the outside it all looks good.

What people don’t always know is I have a secret.

My funny, bright, handsome teen is sick.  This year he was diagnosed with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) in addition to hypermobile Ehlers-Danlos syndrome (hEDS) and most likely postural orthostatic tachycardia syndrome (POTS).

It’s a year since this condition really stole his world, and flipped mine upside down.

Behind my smile, make up and the plumped cushions on the sofa I’m often drowning.  Like a swan I appear to be gliding on the surface but in reality I’m frantically paddling against a relentless tide to keep afloat.

This week I met my friends at the usual coffee shop after the school run on Friday morning.  As they chatted about their lives and shared their news, I felt like I was living in some sort of parallel universe.  Usually this is my little escape from the real world but just lately it’s like I don’t recognise their lives at all, it’s like I don’t belong.  I try to smile in the right places and to be interested, just to cling on to some sort of normality.

My secret is drawing me further and further from the real world.

On a good day when he wakes by himself before noon and manages to work with his tutors for an hour without resting, I’m elated and feel myself slip back into my former life a little, like putting on a pair of old comfortable shoes.  Only to find those shoes start to nip again as the good day quickly passes and the panic about his health, education, social interaction and his future begin consume me again.

I want my friends to get it, I want the world to know what it feels like to be a parent of a kid whose life gets smaller and smaller every day.  Sometimes I can see in their eyes that they really want to understand but they don’t have the words and I often haven’t got the energy left to help them to truly step into my shoes.

I quickly revert to my default setting – humour and small talk, just so I don’t have to try.

I know I can not live in this state of unrest long-term that I will have to learn to accept our new normal.  As more people understand what this illness is and what it strips from a family I hope that my real life and my double life will begin to merge a little so that I can feel whole again.

Until then I will try my utmost to be a good mum, friend, sister and daughter and pretend that it’s alright.  To try to have a little control over the simple things in a world where I have no control.  To be there, present, always.  To be mum.

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Written by Sarah Wells

Thanks for stopping by… My name is Sarah, I’m a mum, wife, writer, blogger, advocate and occasional public speaker. This is my blog, where I share our life with the world while raising my children to be happy with their perfect imperfections :)