‘The devastating impact of the hidden illness’ | Ulster Star | 20 January 2013

January 20, 2013

From the Ulster Star, 21 January 2013.

IT may be known as a hidden illness but the affect of ME on sufferers and their families is anything but hidden. 45-year-old Debbie Deboo, who lives with her husband Richard and carer Malcolm Eales in Upper Ballinderry, was diagnosed with the debilitating illness a decade ago. Every day she struggles with the devastating impact of this condition and last week the struggle became too great and Debbie felt she had no other option but to end her life. Debbie took an overdose but thankfully her suicide attempt failed and she survived to fight another day. This is her story…

I’ve had ME for ten years now, and the diagnosis came after I had had a protracted period off work, following glandular fever. I was working full-time as a teacher at one of the best schools in southern England, in Essex where I lived at the time.

I wasn’t getting better and I was getting weaker and weaker and more and more frustrated and puzzled at my symptoms. I went to the doctors and broke down in tears because I didn’t know what was happening to me.

My GP arranged an appointment for me with a specialist, Dr DG Smith. He diagnosed ME and said that I displayed the classic symptoms.

As I had been ill for over a year at this point it was, in a way, a relief to have a name to attach to my condition, but as I learned more about ME I was also fearful for the future.

The treatment on offer from the health service was very limited, comprising Cognitive Behaviour Therapy (CBT) or a regime of pain management. Also anti depressants to help me sleep.

None of this, of course, was about treating what was making me ill but simply a strategy for trying to help me to cope with what was happening to me. It therefore made no difference to my symptoms, which were getting progressively worse.

I had to resign from my job because I knew that I would not be returning to work anytime soon, and felt that it was unfair on the pupils to have a succession of temporary teachers, and so with my resignation the school was free to hire a permanent replacement.

From working full-time I found myself working no more and losing the ability to engage meaningfully in society – I was now in a wheelchair and essentially housebound as I had very few “good” hours of energy each day. Everyday activities were becoming harder and harder – shopping, socialising, even just getting ‘out and about’ were becoming rarer activities with each passing week and month.

I had lost my job, and now I was losing my friends and my independence – no matter what I wanted to do I was reliant on others to help me. I felt embarrassed and frustrated, and angry – I had always been so independent, fiercely so, and yet now I couldn’t even go out a buy a loaf of bread on my own.

Before I got ill I enjoyed an active social life with my husband and friends.

I lived in London and lived life to the full. I went to gigs, pubs, restaurants, the theatre, festivals, enjoyed reading books, listening to music. All of that, all of it has gone. I can’t even read books anymore as I lack the concentration.

Over the course of the ten years since that original diagnosis, my symptoms have got progressively worse – now I can barely manage a few steps, and sleep more during the day than I ever did previously.

If I do engage in a small activity during the morning (for example, being taken to the shops in my wheelchair) then I am worn out on my return and my afternoon passes in a painful haze of sleep and grogginess.

The physical pain is always there – the exhaustion that affects ME sufferers is only one of the symptoms, there is also a relentless ache throughout the body, and a grinding, dull pain that gnaws at ones legs, arms, hands.

ME really does represent the profound, systemic collapse of the body, a drawing down of function and ability, leaving the sufferer lying prone in pain, barely able to lift his or her hands or head, staring upward at the ceiling, and wondering when will relief ever come?

And so that, of course, has a massive, catastrophic effect on one’s psychological state. Losing my job, my independence, my friends, my ability to live my life the way I want to, and having to rely on others for the smallest things, has caused me great emotional distress and, yes, despair.

The absence of any effective support from the health care services, the lack of a cure for ME or any reasonable chance of one any time soon,and the slow but progressive deterioration in my physical abilities and continued and increasing cognitive dissonance (the impact on brain function in ME sufferers has been likened to early-onset Alzheimer’s) has all very badly effected my mental health.

I did take an overdose and try to end my life recently. This was done out of sheer desperation, a feeling that nothing was ever going to improve, that the future was only going to be a worse version of yesterday.

I did not want to live with the pain, the crushing exhaustion, the mental confusion and despair, the lack of opportunity, the absence of hope. I wanted more than just the rubbish I had been forced to endure for the past decade.

Of course my overdose did not work, and I mightily glad that it did not. Something good can come from even the darkest moments, and now I have renewed energy to speak out about what ME sufferers need – to be heard in society, for our illness to be taken seriously and for healthcare professionals to put their efforts into finding a cure, and not in patronising us with talk of ‘pain management’ and ‘gentle exercise’. I am determined to be a voice for those who are suffering in silence.

My overdose also forced me to reconsider what I had been doing, and what I had been doing was too much for how ill I am.

I have always been a very positive person, and despite my ME I have striven to keep going, keep myself active. Over recent years, despite all that I’ve described, I still managed to create and run a successful, award-winning, celebrity-endorsed business (www.glamsticks.co.uk, recently sold), published a book, campaigned actively on animal rights issues, rescued a dozen hens, given many national press and radio interviews and offered support and help to many others suffering from similar conditions through social networking sites, including writing a blog to describe my experiences with ME. I’m currently writing a book about my life with ME, my success with GlamSticks and the struggles I’ve endured with the medical profession.

I do find writing the blog cathartic, one of the things that helped me through the darkest moments which I called ‘the pit’ was writing poetry.

I’ve had encouraging emails and messages from others suffering from invisible chronic illnesses telling me that my blog posts describe how they are feeling, as does my poetry and they ask if they can share them with others to help explain what they are going through.

But I know now that I need to give more time to me, and I’m content to take time out from being so active and spending more time resting, creating a space around me that is just for me.

As I say, I will speak up about my illness, and make sure that ME sufferers are heard. What we want are not anti-depressants, nor being pushed from waiting list to waiting list, but for our illness to be treated with the proper seriousness that it d

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