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Article: My Mum's Glass Prison

Mum and Dad, August 2006

Here's an article I've written. It's about living with my Mum who's suffered with Myalgic Encephalomyelitis, M.E, and how it affected me when I was little.

How would it feel to have a permanent hangover, as if your head’s plugged up with cotton wool all the time? What would it be like not to be able to get down the stairs without your head pounding with pain, your leg muscles hurting so much you collapse onto the sofa like a beached whale? Imagine living with the worst case of flu you’ve ever had where your body feels leaden, only it doesn’t just last for a few weeks, it goes on and on and on and on… Now imagine what that might feel like through the mind of a small child, watching and feeling the pain the centre of your world was going through.

My Mum, Linda Davids, 49 years old, has suffered with Myalgic Encephalomyelitis, M.E., for 18 years now.

When Mum got married at 24, she was the prime example of fitness and health. She’d worked as a full time Primary School teacher for 6 years. Mum and Dad would go on hikes together every week, plan camping trips, as well as looking after their 2 year old daughter, me. But this action-packed lifestyle was unexpectedly shattered.

A year and a half before my brother was born when Mum was 32 and I was 2 and a half, Mum began to get seriously ill. No one knew what was wrong with her.

Mum went again and again to the GP, sometimes with her husband and sometimes with parents, saying how dreadfully ill she felt. Her GP was very concerned about her loss of weight and evident weakness, but was clueless as to what it could be. She kept saying, “it can’t be anything serious,” and even suggested giving her valium until tests were completed, to calm Mum’s anxiety about it.

After about 8 months, Mum got so ill, she had to go to hospital for 2 weeks. She had right-sided numbness and tingling in her limbs, was unable to walk unaided, and was sleeping round the clock. The neurologist there suspected M.S., admitting her to Maidavale Hospital in London for brain scans and lumbar puncture. I thought she was dying.

When she was in hospital, I had to stay at my Dad’s parents. I couldn’t wait to visit Mum in hospital, but couldn’t understand why she wasn’t getting better. I felt angry and resentful inside because I never used to understand why she was always so tired.

Life over the next few months was full of relapse and remission for Mum, but just 18 months into the illness, she found she was expecting my brother, Chris. When he was born, I loved helping out with him and became extremely possessive. He attended Montessori whilst Mum was ill, and like me, was looked after by childminders when he got home. 

I remember I was walking home from school with Jill, the childminder, and I ran across the road. She shouted at me, telling me never to cross the road without holding her hand. I stormed off, thinking ‘how dare she tell me this, she isn’t my Mum!’

Life went on and our family juggled with the joys of early childhood and the sorrows of Mum’s debilitation of the next few years.

When I was 8, I developed nightmares, and didn’t sleep in my own room for over a year. I was scared of death, and kept questioning people about what they’d do if I died. I guess I was picking up what Mum was feeling. Many nights, I slept at the bottom of my parents’ bed. Whenever I was made to sleep in my own, I’d either sneak into my brother’s bottom bunk, or into my parents’ room in the middle of the night. My Dad would get up for work and nearly trip over me at the bottom of their bed on a morning.

In middle school, a girl would constantly tell me I was ugly and too skinny. She’d say my face was blotchy, and draw pictures of me, showing everyone. I developed a low self-esteem and a phobia of going to school. I’d hide myself in the school toilets at break time and stare at myself in the mirror, telling myself I was ugly. I’d spend ages covering up my face with makeup, believing my face was blemished, even though there was nothing there.

It was through my university years I learnt to gain back my self-esteem. I made a wonderful set of friends, and one especially amazing one, who’s stuck by me since middle school. I’ve learnt to believe in my abilities, am determined about my goals in life, and what’s really important. I realise that as a little child, I probably absorbed a lot of the anxiety, which surrounded coping with a severe illness in the family. We all managed with very little help from outside sources because it just wasn’t available.

In 2002, Mum’s parents paid for her to see a Specialist who’d had remarkable success with M.E. patients in the USA. After several consultations, he tackled each area of Mum’s health problems with expertise. Over a period of 2 years putting his treatment into action, she slowly regained the health she’d lost.

She had her crazy youth year last year when she began to improve during my second year of university. She’d call me, telling me all about her clubbing and pubbing expeditions with new friends she’d made. She was trying to make up her youth, and whenever I’d come home for a weekend, there was always some kind of house party or night out planned. I came home from university for a break, but instead of that, I’d go back exhausted from partying. She did eventually shatter herself out, and the M.E. symptoms did return. She’s pacing herself again now, and is finding her way into the working world.

She’s been studying Reflexology and Indian Head Massage, training to be a Holistic Therapist, and is also doing Teachers’ Returner Course, hoping to do home and hospital teaching for children unable to attend school through illness, “I love making contact with people and embracing life again after being isolated for so long,” she says.

With charities such as Action For M.E. aiming to put more time and money into raising awareness of the disease, people who are diagnosed with the condition in the future will be able to get all the help they need, instead of going through the hell my Mum went through.

Let alone doctors and society suspecting Mum’s M.E. was all in the mind, the people nearest and dearest to her didn’t even understand. One thing proves the most precious: Dad supported Mum even when everyone else turned their backs and is still right beside her, as she’s slowly recovering, braving a new career, meeting new people. Even when Mum was at her most ill, her love and interest for both Chris and myself as children never died. I admire both Mum and Dad’s unfailing love for each other, which conquered all in the end.

I wrote this for one of my assignments as part of my writing course through the Writers' Bureau.