Turning disability on its head

Myalgic Encephalopathy (ME) is a very misunderstood condition. Sufferers can experience a whole host of symptoms ranging from dormant viruses, cognitive dysfunction, insomnia, numbness and Irritable Bowel Syndrome in varying degrees, but the most prevailing symptom is absolute exhaustion. This, and the fact that exercise can exacerbate the symptoms of ME, has led to misconceptions that ME sufferers are lazy and exaggerate the pain and exhaustion they experience to avoid exercise. This misinterpretation is often fuelled by the media.

A lady who knows all too well how ME can limit one’s mobility and experiences is former secondary school teacher, Debbie Deboo, who was diagnosed with ME thirteen years ago. “ME has been completely devastating for me. Before I got ME, I was a career professional who worked hard and played hard.”

Indeed, Debbie and her husband decided not to have children as they wanted to experience all that life has to offer, from travelling to going to gigs and socialising with friends. But Debbie’s lack of mobility meant that this all had to stop. Her cognitive dysfunction even affected her concentration to the extent that she could no longer read and sadly could not enjoy the passion of the literature she had shared with her husband or make use of their personal library that houses several thousand books.

Debbie said at the time: “I feel stupid. I have lost my confidence. I travelled to India alone, now I can’t even leave the house alone. I haven’t been to a shop alone in over ten years. I cry myself to sleep, I cry in the day; I just want to feel well, I just want to get on a bus and go to the shops on my own. It’s not even the lack of mobility; it’s the complete breakdown of my body when I try to do anything that requires any exertion.”

Despite saying that friends dropped her because she was not fun anymore, Debbie says her husband, Richard, was her rock. “My husband has been completely supportive; he took his marriage vows seriously, in sickness and in health, till death do us part.”

Although there is no cure for ME and Debbie struggles to manage her symptoms, having tried complimentary therapies and medication, she is now determined not to let it hold her back. With a new positive and optimistic outlook, Debbie developed a home-based business called ‘GlamSticks’, producing high-quality, stylish mobility aids. In 2011 she won ‘Mobility Product of the Year’, but later sold the successful business due to continuing ill-health.

Again, Debbie made the best of her situation by establishing ‘Seren Photography’, having experimented with the new camera she had had to buy to take product photos for ‘GlamSticks’.

“As I was often too ill to go out I used my camera to take photographs of things I owned such as handbags, shoes, ornaments, jewellery etc. The photos were not great at all but I was enjoying taking them.”

It was this joy that motivated Debbie to attend some photography courses with like minded people which developed her passion for wildlife photography. Debbie’s photos have since gone on to win such awards as Ulster Wildlife ‘Nature Matters’ Photographer of the Year and Countryfile Magazine’s Photo of the Month in Northern Ireland where she now lives, whilst BBCNI weather have featured around thirty of Debbie’s pictures.

Debbie has used her new skill for the greater good, involving herself in charity fashion shows and various other charity projects including a ‘Look Ten Years Younger’ fun photo shoot photographing members of the local ME support group and deliberately touching up the photos to make them look younger. Each person who participated paid £10 which then went towards ME research.

Debbie’s advice to anyone newly diagnosed with ME is: “Give up anything that is taking your energy.  Pace yourself and try not to do too much.  Accept your life is now different.  Yes, you will mourn for your old life, but that life is gone now. Adapt to your new life and embrace new ways of doing things.  You can’t go dancing anymore, so maybe write music?  You can’t leave the garden, then take photographs of what is around you or take up drawing or painting. Don’t give up, always stay positive, look for opportunities and take them. Make the most of your life without making yourself ill. This isn’t going to go away; this is your life now, live it as best you can but don’t make yourself more ill.”

TNT News Jayna Patel

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