Greg Crowhurst, R.N. - Norwich, UK

 

As a registered nurse (RN), running my own training and development company, I should have been well equipped, when my wife suddenly became severely disabled, in need of total care. But I wasn’t, and we were thrown into the deep end.

I soon discovered there is no respect, no treatment, no cure, for severe myalgic encephalomyelitis (ME); an illness few understand, support or recognize. John Major was Prime Minister, when our life, for all intents and purposes, was put on hold. Twenty one years later, little has changed. In fact, it is worse in many ways. There is still no medical research into Severe ME to speak of. My wife's intense physical suffering, every single day, for the last two decades, has been unimaginably horrendous.

Trying to juggle my business, study for an MA and care for my wife, I struggled. Eventually something had to give. There was only one real choice to make – to follow my heart. So I gave up my business. When you give up what you know, to enter unknown territory and do battle with an ignorant (at best), medical establishment, you learn to grow in ways you previously could never have imagined. It strips you bare, it makes you new, and it makes you stronger.

You soon learn that the system will try to clientize and separate you, that you, as a carer, will be perceived as a second class citizen – and that your loved one will be portrayed as a burden, whom you need respite from. You lose status once you enter into the world of ‘unpaid carer’.

Our greatest strength has always been our shared love for each other and our belief in the equality of our relationship. We stand in equal partnership, despite the illness complicating this on every level. Our shared values and beliefs hold us together, we work things out, together, in a bond, forged in the fire of suffering and loss, even if we struggle to understand – for the illness is intense, erratic, unpredictable, profoundly tormenting, disabling, invisible and incomprehensible. Together we deal with our difficulties, we know that love can, and does, conquer all.

Twenty years on, you find a warrior, not a burnt-out carer. Fiercely proud of my nursing qualification, I am one who has battled continuously to raise the profile of awareness of my wife's devastating neurological illness. This year, you see, I was awarded third place for the BJN Nurse of the Year Award. Shortly afterwards, I had a conference call with the Minister of Care. I am headed to the top, to make a difference in the lives of people with ME.

The key is to love – not only what you do, and who you care for, but yourself as well. In the face of intense, indescribable isolation, negation and suffering, all three need honouring, equally. If you look after yourself, then you will triumph.

 

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