ISABEL Walter lies in bed, the curtains closed – the light is too much for her to cope with.

She is bedbound. Her world is confined to the four walls of her bedroom, limited by the chronic and debilitating condition ME.

Every day, she suffers from nausea, headaches, fevers and intense fatigue.

Isabel, who was an academic researcher, is unable to watch TV or to use a computer. She cannot listen to music or the radio.

During her day, she will eat three meals, brought to her by her husband, Paul Hibbard.

On a good day, she may write a few notes about her life which she hopes one day, although in several years, may become a book.

She will spend seven minutes listening to a book tape – seven minutes is all she can hope with, but she reckons that inafew months she will have enjoyed another book.

Isabel can make it to the bathroom four times a day without help and can read and talk in the briefest of snatches.

The highlight of her day is to speak to Paul, which she does for 15 minutes.

These exertions, as small as they be, will utterly exhaust her.

This is Isabel’s life, restricted by ME, a condition which little is understood and for which there is no cure.

Isabel, 43, met Paul, 44, when they were both PhD students in London 19 years ago.

They moved to Scotland and Isabel worked in social research at St Andrew’s University.

“I used to go running,” she said.

“I used to walk up mountains. I loved it. I hardly had a day of illness before getting this.”

ME was given the derogatory nickname yuppy flu in the Nineties. It is an invisible illness with indistinct symptons and no examination findings which can confirmadiagnosis. As such, sufferers were dismissed as hypochondriacs.

Isabel said: “I used to have that prejudice before I was sick. I used to think people should pull themselves together and get better.

“This is a real and physical illness.”

Isabel’s ME was triggered, she believes, by a virus in 2007. Two years later, she was using a wheelchair and she has been housebound for the past four years.

In 2012, she married Paul, a psychology lecturer at the University of Essex.

Even their wedding day was planned around Isabel’s condition.

She explained: “We had the wedding late in the day, so I could rest in the morning and I had a rest in the middle. We also had a quiet room for me to sit. The adrenalin got me through.”

The couple moved to Wivenhoe two years ago to be closer to family and in the hopes of getting better health care.

But Isabel’s condition worsened.

She suffered a relapse after contracting the norovirus and for the past 18 months, has been bedbound.

To live trapped within four walls, living a life so limited, seems cruel beyond belief.

But Isabel is positive and determined not to be a victim of ME.

She said: “You can live a life, even if it is limited, and it is a life which is valid and important.

“I used to do creative writing and I started writing notes about my life.Ihear the church bells and I am learning bird songs.

“You realise the smaller life gets, the more notice you take and the richer it is.

“You see the smallest of details which other people are missing.

“You realise how important certain things in your life are. I can talk to my husband for 15 minutes a day,Ican’t do any more, but it is so precious.

“I know people out in the world don’t think about talking to their husbands, they just do it automatically.

“This illness is awful and difficult, but it is part of the gift of ME that you appreciate and value life incredibly strongly.

“There is a thought that for people like me, life is not worth living. It isadifferent life, but it is my life and I am going to hold on to it.

“You always have hope you will get better.”

Isabel has physiotherapy and occupational therapy as her muscles have wasted.

The common thinking was being active would help, but now it is acknowledged a key feature of ME is the body’s inability to recover after expending even small amounts of energy. So rest and recuperation are vital.

Paul goes to a support group, Colchester MESH, to get information and support for those living with ME.

For Isabel, it is a question of managing her condition and hoping for a cure.

Research in Norway may have made a breakthrough after a woman with cancer underwent chemotherapy which helped her ME.

Clinical trials are due to start.

There are no promises, but there is hope.

 

 

 

It is estimated 250,000 in Britain are affected by ME.

Myalgic Encephalopathy is also known as Chronic Fatigue Syndrome, Post-Viral Fatigue Syndrome or Chronic Fatigue Immune Dysfunction Syndrome.

It causes severe and debilitating fatigue, painful muscles and joints, disordered sleep, poor memory and concentration.

About a quarter of people with ME are so severely affected, they remain bed or are housebound.

Some sufferers return to normal health, although it can take years.

More research is needed into ME to find out what causes it. Action for ME campaigns and invests in pilot research projects as well as offering support and information to anyone affected by ME.

For more information, visit www.actionforme.org.uk or call 0117 927 9551.