‘M.E. can feel like a life sentence but now I don’t see myself as ill’ | Sheffield Star | 12 November 2012

From the Sheffield Star, 12 November 2012. Story by Richard Blackledge.

CHERYL Harper’s old life will be familiar to the daily experience of many working mums – juggling long hours in her job with bringing up children, exercising and a busy social calendar.

But for Cheryl, the hectic pace took its toll, until she finally reached breaking point and was struck down with ME, leaving her exhausted and housebound.

The 38-year-old, from Penistone, Barnsley, became one of around 250,000 people in Britain affected by the condition, which causes severe and debilitating fatigue.

She has since been supported by Sheffield’s specialist Chronic Fatigue Syndrome/ME service at the Fairlawns medical centre on Middlewood Road, where she was given help learning how to change her routine and balance the energy she uses each day.

Cheryl, a mum-of-two, first became ill eight years ago, and the onset of her ME was shockingly sudden, occurring as she drove home from a day at work as the manager of an insurance firm.

“I was like any other busy working mum, I was always on the go, went to the gym and myself and my husband enjoyed a good social life,” she said.

“But one day in mid-2004 I was driving home from work and I could feel myself getting more and more tired and so I went to bed as soon as I got in.

“When I woke up the next morning I couldn’t get out of bed, my arms wouldn’t lift up and I was aching all over. My husband thought I had flu, but with the excruciating head pain I thought I had a brain tumour.”

She then endured a distressing two-year ordeal, struggling to understand her problems while doctors tried to provide a diagnosis. “It struck me down out of the blue and I was off work for six months feeling constantly exhausted,” Cheryl said.

“I would wake up and not feel refreshed at all and I didn’t leave the house in that period because I was just too ill.”

Cheryl became increasingly dependent on her husband, Damon, dad to her daughter Lauren and younger son Xander.

She was eventually prescribed medication by her GP, who diagnosed depression, but the treatment failed to relieve her growing list of symptoms – unrelenting fatigue, nerve pain, sensitivity to light and sound and lack of concentration, all typical of ME. Cheryl returned to work, but at the end of 2005 once again found herself resigned to being too ill to leave the house for another six months.

After further appointments with psychiatrists, a pain clinic in Mexborough and tropical disease specialists, Cheryl was finally told she had ME and referred to Fairlawns.

“The service was fairly new so I was one of their first patients,” she said. “I just felt relieved to be there.” She was offered either group or individual therapy sessions, and introduced to the concept of ‘pacing’, which helps ME sufferers find ways to balance how they use their energy, ensuring they use the same amount each day.

“I chose group sessions so I could meet people in similar situations. As CFS/ME is an invisible illness, you can feel very much on your own, so it was great to hear that it does actually exist and listen to other people’s experiences,” Cheryl said.

“I have to carefully plan my daily routine out to make sure I don’t use up all my energy in one activity that will give me a ‘boom’ one day and in turn will ‘bust’ for the next few days and leave me with no energy.”

Cheryl now paces all her activities, and eats small nutritious snacks throughout the day at two-hour intervals, instead of large meals. “The condition has completely changed my life. Now I can’t burn the candle at both ends, I have to regulate everything, including my sleep time.”

Cheryl is well enough to work three days a week, but still needs treatment for nerve pain in her hands and acupuncture to deal with aches.

She said she thought the ME service was ‘fantastic’, adding: “It’s the only lifeline in the area and has been a massive support to me. I have no idea what brought my condition on, but I think I made things worse as I overdid it through working long hours, not eating properly and over-exercising.

“I don’t know if I will relapse again. I did initially go through a grief period for what life was like before, as the condition can feel like a life sentence at the start – but now this is my life, and I don’t see myself as ill.”

Myalgic encephalomyelitis (ME) factfile

ME stands for myalgic encephalomyelitis. Myalgic means muscle aches or pains, while encephalomyelitis means inflammation of the brain and spinal cord.

Symptoms include muscular aches, joint pains, disturbed sleep, poor concentration and headaches.

There is no test for the condition, and there are also issues about the illness’s name – the term chronic fatigue syndrome is favoured by doctors, but many sufferers prefer the term ME.

Possible causes include genetic factors, viral infections, stress, depression and traumatic events, such as bereavement.

CFS/ME affects around one in 300 people in the UK, and there are an estimated 2,000 sufferers in Sheffield. The condition is three times more common in women than men, and people in their early 20s to mid-40s are most susceptible.

For more information about the specialist service call 0114 2292937, or the Sheffield ME Group on 0114 253-6700.


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