Forcing my eyes open I can hear the increasingly agitated voice of my husband Ed urging our two children, Chloe aged eight and Max, five, to get dressed. I look at my phone, it’s 8.30am, I’ve had a lie-in by most parents’ standards. But I feel utterly exhausted. Forcing myself upright and out of bed I pull a hoody on over my pyjamas, shove my feet into slippers and move to chivvy my offspring. A glance in the mirror confirms what I already know; I look awful following a night of pain. All I want to do is stay in bed but I’m a parent and, because of Lockdown Three, my children aren’t in school. I have no choice but to get up and be mum, and teacher, for the day. Max has a call with his teacher at 8.45am, I get him organised, taking care to stay out of sight of the camera, then get Chloe online at 9am. Ed is at his desk working so I go make us coffee and steel myself for another day of juggling my children’s needs, whilst feeling awful.
I’m no stranger to illness. I was born in 1980 with a condition called Hirschsprung's disease, a disorder of the abdomen that occurs when part or all of the large intestine has no nerves and therefore cannot function. They operated when I was just three days old, removing the segment of my bowel that didn't work and creating a colostomy (an opening of the large intestine which leads to a bag worn on the outside of the body) that was reversed nine months later. I underwent major surgery again when I was 12, 16, 17, 19 and 22.
In my twenties and thirties there was a blissful period when I was as healthy as someone with my history could hope for. I lived a ‘normal’ life, travelled, built my career, fell in love, married and eventually (thanks to IVF) had two beautiful children. Their conception, my pregnancies and their (emergency C-Section) births were far from easy but I bounced back physically. Full of joy at finally being a mum.
There is no cure so I have no choice but get on with it. I manage as best I can.
Perhaps, due to my life experiences, I was never plagued by the ‘mum guilt’ so many friends had. I just got on with it – confident that I was doing my best, that my children were happy and thriving.
But now I feel nothing but guilt – because I feel that I’m no longer the parent my wonderful children deserve. You see in the last 17 months my health has deteriorated dramatically. I've faced several emergency hospital admissions, unpleasant tests and so much pain. Last summer I was diagnosed by a gastroenterologist, who confirmed what I already knew: My colon no longer works effectively. The options are to remove the whole thing and give me a permanent ileostomy bag (similar to a colostomy), or for me to use medicine to make my body function. But any more surgery would be life-threatening for me, so option two it is. Unfortunately, this gives me awful pain — so much so that I need oral morphine.
So now I live with a chronic health condition, there is no cure so I have no choice but get on with it. I manage as best I can, exercising when I’m well enough, knowing those endorphins help and wanting to build strength and energy to play with my children. I manage it so I’m at my worst when the kids are in bed or my husband is able to be the primary parent – which he is frequently.
When the kids are back at school and lockdown eases things will be better; family and friends will be able to help more. But things won’t really change: Even in ‘normal life’ there is no respite, not on family holidays or special occasions. My children still have to be told to be gentle with me to avoid hurting me, they still see me crying, regularly in pain and forced to spend the whole day in bed. I’m now a mum who gets cross and shouts more than I should – pain making my temper shorter and my anger at my failing body misdirected at those I love the most. I’m still doing my best, but this is not the parent I dreamt I would be.
Kitty Dimbleby is on Instagram at @kittydimbleby
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