ME Awareness: Cambridge woman reveals the truth about living with a debilitating illness | 08 May 2019

 

By John Siddle, Cambridgeshire Live, 08 May 2019.

The condition known as ME or Chronic Fatigue Syndrome affects more than 250,000 people in the UK

Gemma says she no longer has a regular social life. Cambridgeshire Live.

A Cambridge woman with the debilitating illness ‘ME’ is speaking out to raise awareness of her little understood condition.

Gemma Corvalan, 31, went from being fit enough to do pull-ups to becoming bed bound with ME just months after a car crash in 2011.

She is currently cared for around the clock by her husband, Javier, 37.

Often misunderstood, the neurological condition, also known as Chronic Fatigue Syndrome, leaves sufferers in a state of unrelenting exhaustion and profound pain.

Gemma, who is speaking out as part of ME Awareness Week, which runs between May 6 and 12, said:

“I now have no regular social life to speak off and have lost contact with most, if not all, of my friends from my old life. I cannot leave the house by myself as I rely on a wheelchair and spend most of my time in bed, apart from the odd trip to the cinema or to visit a handful of friends.”

Gemma and Javier pictured on their wedding day. Cambridgeshire Live.

“My days are generally spent in bed with my two little companion cats, as my husband works full time to support us. In the simplest of terms, I hate my body. It brings me nothing but hardship and pain.”

“I am but a shell of my former self. Still, I consider myself to be lucky as I have a loving and supportive husband who stands by me, and some loving friends.”

Gemma is one of more than 250,000 ME sufferers  in the UK, one in four of whom are so severely affected they are unable to walk and become bed bound.

It causes symptoms of extreme exhaustion, pain, brain fog, and a variety of other symptoms, such as a malaise made worse by exertion. In extreme cases the condition becomes so severe they have to be fed through a tube.

Research into ME

Despite its devastating effects, less than £1 is spent on people suffering from ME each year and there is a chronic lack of funding for medical research.

Many doctors still don’t know how to diagnose or manage the condition, despite people with ME being more than six times likely to commit suicide.

Gemma has spoken out in a bid to end the stigma and myths surrounding ME, which she experienced firsthand when trying to get a diagnosis.

Gemma said: “A lot still needs to be done mainly amongst GP’s who still doubt the veracity of our symptoms and generally doubt patients and dismiss our struggles.”

“I have had doctors tell me to drink more coffee, in a very dismissive way when I asked if there was anything I could do about my fatigue.”

“These are the people we entrust our lives to and look to for guidance in trying times. The only way to combat this type of problem is by highlighting the realities and the struggles people with M.E. go through.”

“If a doctor cannot accept our illness, there is no hope anyone else, including sufferers themselves, will.”

Gemma, a talented artist, has taken to painting to cope with her illness. Cambridgeshire Live.

Gemma, a talented artist, uses painting as therapy to help cope with her illness, even if it means one painting takes months or years to complete.

She said: “Art has guided and ruled over my world, being the only tool in which I can express the thoughts and feelings that I simply cannot describe or recognise otherwise.”

“And these days this seems especially relevant. My art has now become like an old friend helping me through a process of self-acceptance and discovery.”

The Real ME campaign

Gemma is part of the Real M.E. campaign, which aims to bring an end to people suffering in silence this ME Awareness Week. So far it has received more than 400 photos, video clips and contextual stories from ME sufferers desperate for treatment that works.

Dr Charles Shepherd, from the ME Association, calls ME an “invisible illness”. He said: “When you see people with ME, we might not always look ill, but when our symptoms flare, the effects are obvious.”

“It can feel like a constant flu, the smallest exertion can floor us, our bodies are painfully sore, restful sleep eludes us, light and noise are intolerable, and ‘brain fog’ causes confusion.”

“ME remains a hidden disease. There is no known cure and no effective treatment and it can lead to greater functional impairment than multiple sclerosis or cancer. The most severe sufferers are often the most hidden.”

“People find it hard to understand, with the medical advancements, how something like this can happen in this day and age. We desperately need more funding towards research and give people a fighting chance or reclaiming their health.”

“To look at these people, men, women, children and their individual tragedies, only further serves to ask the question why is ME still not being investigated with the urgency it so obviously requires?”

“We want to tell the world about the real people that suffer because of this real disease.”

Neil Riley, Chairman, ME Association.

The ME Association

Real People. Real Disease. Real M.E.

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

If you would like to support our efforts – particularly during ME Awareness Week – and help ensure we can continue to inform, support, advocate and invest in biomedical research, then please donate today.

Just click the image opposite and visit our JustGiving page for one-off donations, to establish a regular payment or to create your own fundraising event.

Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive our exclusive ME Essential magazine.


ME Association Registered Charity Number 801279