It’s Not Just All In The Mind   (extract)

By Rachael Blackburn

 

At 12, Heather was diagnosed as suffering from Myalgic Encephalopathy (ED – Should be Encephalomyelitis!) (ME).  Now 17, Heather is bedridden and only leaves her bedroom once a day to spend about 15 minutes in the bathroom. Her devoted parents, Ron and Linda, provide round-the-clock care for her at their home in Glasgow. Ron says: “The illness is devastating and has taken over our lives.  One day Heather was a healthy girl and the next, we had become her full-time carers.”

 

It was six years ago when her parents first realised there was something wrong with Heather.  Ron says: “She was 11 and at primary school when she started getting very tired and lethargic. She was an active girl and a keen gymnast.  Suddenly she just had no energy and we had to take her out of primary school for the last few months of the year.”  Tests for glandular fever came back negative and it was assumed Heather had some kind of virus that would eventually take its course and she would bounce back to full health.  “She was in bed for about seven weeks, but gradually got stronger and seemed to recover, so we let her start secondary school on a full timetable.  Heather only lasted a few months at Hillpark Secondary before collapsing with exhaustion.  She has never been back to school since and has missed out on the whole of her secondary education.

 

Symptoms included exhaustion, lack of concentration and spasms caused by hypersensitivity to light, noise and movement. Linda says: “Initially, she was house-bound but not bed-bound.”  Heather is extremely sensitive to light and noise and her parents believe her condition may have been worsened by the fact they live in a busy street in the south side of Glasgow. Ron says: “Heather sleeps in a darkened room because she is so sensitive to light, but the problem that is more difficult to address is that we live on a main road and can’t afford to move house.” Heather has only left the family home twice in the last five years and on those occasions, she had to be moved and stay elsewhere because construction work was going on outside the house.

 

Now Heather spends almost all her time in bed and the only daily activities she is able to manage are eating, reading and occasionally watching TV.  She can talk briefly to her parents and brothers and – depending on her energy levels – is sometimes well enough to be visited by a few friends.  Ron says: “Luckily, she is able to eat.  There are some people with ME who are even worse than Heather and have to be fed by a tube.”

Linda adds: “She doesn’t have a very pleasant existence and her room is dark – a bit like a coffin.”

 

Although there is no cure for ME, Heather takes some medication to help her symptoms.  Linda says: “She’s been very jerky this year, so she’s been taking anti-epilepsy drugs for that and there are some drugs such as Prozac that can help influence the central nervous system, but she’s not been able to tolerate them.”  Linda was shocked when her son Kenneth was also diagnosed with ME about a year ago after suffering from flu.  Kenneth has made a good physical recovery, but is unable to concentrate for long periods of time, so he is being taught at home rather than returning to school.

 

She and Ron believe ME is not taken seriously as an illness by some in the medical profession – an issue that also concerns organisations which campaign for people with ME – and they want to see more work being done on the physical aspects of the condition.  Linda says: “We would like more research into finding a cure for ME so that Heather can have a more normal life one day.  The illness tends to be treated as a psychological thing and there really should be more research into how to treat it as a physical illness.”  In the meantime, Ron and Linda hope Heather’s body will heal itself through plenty of rest and a quiet environment.  Linda adds: “I have said to Heather that I will keep taking care of her for as long as she needs me to.  Nobody really knows what to do for the best, but Heather hasn’t lost hope – even though she is able to do so little.”