From as early as I can remember I wanted to swallow the world whole. I thought anything was possible. I just thought I would have more time.
So goes a quote from a woman you are unlikely to have heard of but is a figurehead of increasingly politicised individuals across the globe.
And while they may be drained of physical strength they are mounting their own united online fightback – often from their sickbeds.
Their heroine is American Jennifer Brea. And the illness they share is Myalgic Encephalomyelitis, also known as ME.
Jennifer was a PhD student at Harvard when she was first struck by the complex and misunderstood illness which entered public consciousness in the 1990s.
Somehow, Jennifer found the strength to make a Sundance award-winning film about the condition, also referred to as Chronic Fatigue Syndrome.
And thanks partly to Falkirk Community Trust, a special screening of the film will take place at Bo’ness Hippodrome on Saturday, June 2.
The organisation teamed up with ME and CFS sufferers from Linlithgow to stage the one-off event.
It is hoped that it will dispel the many misconceptions that surround the condition.
Alison Strauss, arts development officer for film and media at Falkirk Community Trust, said: “We are delighted to be working in partnership with ME/CFS patients and carers to present this film.
“Unrest is more than a campaigning tool appealing to the medical world and society to take this disease seriously. It is a well-made and poignant documentary from a uniquely personal perspective and deserves to be widely seen by more than those people who are directly affected.”
The Journal and Gazette has spoken to two people who will be watching with interest, including a former elite athlete who represented Ireland in orienteering but struggled, at one point, to reach the end of the street without falling prey to exhaustion.
Jennifer Leonard, of Kettilstoun Crescent in Linlithgow, was among those who helped organise the event and sees the film as “the start of a new beginning” for people all over the world.
She said: “It is our hope that this special screening will help bring local people together to raise awareness of this disease.
“Medical professionals and social workers will be particularly welcome at the screening as the film tackles complex social and medical issues and gives a unique insight into the lives of severe ME sufferers.”
Describing her own symptoms, which were at the milder end of the scale, Jennifer said: “One summer, I caught a cold. It wasn’t a really bad cold, so I only took a day off work.
“Although the symptoms disappeared after a couple of months, I still felt ill and had several months off work.
“Everyone always tells me they feel tired too, but this doesn’t feel like when you are tired after a hard week at work or even running a marathon.
“It felt more like having permanent flu – without the fever, cold and cough symptoms. Instead, I had headaches, body pains, felt completely drained and had difficulty thinking straight.
“You can force yourself to keep going but clearly your body is telling you that you need to rest and doing too much just makes it worse.
“The hardest part is learning to pace yourself – the telltale sign is that the fatigue is post-exertional.
“I eventually recovered sufficiently to go back to work part-time and was even able to start gentle exercise after a couple of years but I’d still pay for it with a flare-up over the next few days.”
Chloe Whyte, a 17-year-old who has just left S6 at Bo’ness Academy, also suffers from the condition.
She said: “When I was at my lowest point and could no longer get through each day without the aid of painkillers, a crutch and at least ten hours of sleep, the doctor I felt I could trust for advice was less than understanding. I was told to sleep more.
“People seem to think it can be cured by getting more sleep – like depression can be cured by smiling more often?
“And there are those who won’t even accept that it is a disease – they believe it to be a mere excuse for laziness.
“My time at school taught me that young people tend to fall into the latter category.
“I used to feel an overwhelming amount of pressure to keep up with my peers and be a ‘normal’ teenager. But I quickly learned that you must be your own kind of normal.”
Illness which eats up energy
According to current estimates, more than 21,000 people in Scotland have ME – and 75 per cent of them are female. A quarter of all patients are bed-bound.
This has led to comparisons by activists that they are being treated like women in the Victorian Era whose problems were dismissed as hysteria.
There is no single test that can diagnose the condition, no universally effective treatment and, most crucially, no cure. People with ME have a lower quality of life measurement than any other disease tested.
Help for patients has not been prioritised in Scotland.
There are no ME specialist hospital consultants here and only one specialist nurse, who is based in Fife. Nor is there any publicly funded research being conducted here.
ME is the main cause of long term absence in our country’s schools.
On a wider-UK basis, the economic cost of ME to the UK economy is at least £3.3 billion per year.
Doctors feel that most patients develop the syndrome after contracting a cold, flu or other viral illness but other environmental factors can also act as a trigger.
The nerve system, hormones and the immune system would seem to be the three biggest casualties of ME.
Symptoms are chiefly tied up with tiredness but, unfortunately, range far beyond fatigue. They include sleep disturbances, muscle and joint pain, sore throat, headaches and memory problems.
Cognitive Behavioural Therapy and medication can be used to treat ME but one more controversial treatment is Graded Exercise Therapy which hit the headlines in the last week. It is argued it could cause sufferers to relapse.