At the age of 34, Rebecca needs help with simple tasks that we tend to take for granted, such as washing her hair. Her arms get tired after only a little while and she is physically unable to finish the process.
She sits in front of me with her friend Cristabel, who is wearing big sunglasses to prevent the sunlight hurting her eyes, and they share a joke. Their friendship came about through the Maltese NGO for Fibromyalgia and ME (Myalgic Encephalomyelitis).
Rebecca does not remember life without these conditions. She recalls how, as a child, she would often wake up in the middle of the night with excruciating pain in her legs. "I remember the pain was bad enough to make me cry - and I didn't cry much as a child," she said. When she was 17, she contracted glandular fever and it was then that she was finally diagnosed with ME after 10 years of it not being recognised by other doctors. Just three years prior she was diagnosed with fibromyalgia. She refers to the seven and ten year gap as 'a horrible time'.
Fibromyalgia is a central sensitisation condition in which the pain transmitters are elevated, causing pain to be felt at a higher level and for longer. Meanwhile, ME causes slow energy restoration: the bodies of sufferers take a very long time to generate energy, which means they are often left debilitated and confused. There are more than 64 recognised symptoms of ME and fibromyalgia, many of them way beyond pain and fatigue.
"Due to the disability being an invisible one, many doctors do not understand it," said Rebecca. "Also, they find it hard to believe as there are as yet no tests to diagnose both FM and ME. The diagnosis comes through a whole exclusion of other conditions. Only when all other conditions are excluded can one be diagnosed. However this is not always done unfortunately, thus endangering the lives of sufferers."
The unrecognised condition
In the five years since ME/CFS & FM Alliance was established, it has drawn together a group of some 500 sufferers. Rebecca believes that although fibromyalgia has become more recognised locally, ME is still a taboo subject. The two are often interlinked, but people suffering from fibromyalgia do not always necessarily have ME.
"Fibromyalgia causes 40 per cent of sufferers to either dramatically reduce the number of hours they work or stop working altogether" said Rebecca, who is the Public Relations Officer and Events Manager of the NGO, together with Ruth Debono and Maria Spiteri. "When it comes to ME, 75 per cent of sufferers are housebound and therefore unable to go to work, 25 per cent are bed-bound and three per cent will die."
Although the condition is recognised by the World Health Organisation and in a number of countries in the European Union, it is not yet recognized in Malta.
"It's a horrible thing to say, but I have become used to living with pain and headaches," said Rebecca, "it's normal. You wake up in the morning and you feel pain or you have been reading for too long and get a migraine. What really hits me is the fatigue that comes with ME." Such fatigue has sometimes even caused her to wake up paralysed from her waist down. Moreover, one of the symptoms of the condition is non-restorative sleep. "You wake up in the morning and have no energy to get out of bed," she said, adding "I am existing and not living."
The exhaustion results in the inability to commit to a job that is either outside your home or requires too much energy. Therefore, teleworking opportunities are the favoured option. In fact, the NGO is constantly looking for such opportunities, but it appears that there are not many of them in Malta. "I want to work!" said Rebecca, "I want to earn money and do things. I don't want to sit on the sofa all day."
Moreover, a source of financial support is still unattainable, said Rebecca. "The conditions are not yet recognised by the government, and you cannot afford medication, so you don't get better - it's a vicious cycle." "Something has to be done to stop this circle, the conditions need to be recognized or the situation is just going to get worse."
To make a bad situation worse, due to the fact that these conditions have not yet been recognised as a disability by the government, there is no financial support available. "If you can't afford the medication" said Rebecca, "you don't get better: it's a vicious circle and something has to be done to break this circle. The conditions need to be recognised or the situation is just going to get worse."
Feeling as if you haven't slept for three days
Cristabel, a 23 year old psychology student, explains how - because of fibromyalgia- it took her five years to get into university, as the associated pain and fatigue affected her cognitively and reduced her ability to study. "If you're tired, you won't study or remember," she said.
She likened the fatigue to "feeling as if you haven't slept for three days, but on a daily basis." She also remembers having symptoms from as early as when she was eight, including stomach pains and anxiety, and was diagnosed with depression when she was 16. However, when she got better and stopped the medication three years later, she still found herself battling the symptoms and was diagnosed with fibromyalgia.
"I was never had an ordinary youth, she said. I am always in pain, always tired, and if I have university class - or if I get a job - I can forget going out afterwards. "I cannot live the lifestyle that normal young people do. And it makes me think of my future as bleak."
Cristabel is hoping that, after completing her course, she will manage to find a job where she can work from home or which offers support and flexibility.
Is there a cure for these conditions? Cristabel and Rebecca say there is no ultimate cure, but the situation can be helped considerably through pain management and holistic therapy such as acupuncture. However, again, these come at a price. "Things that help are expensive," said Rebecca, going back to the vicious cycle which her, together with hundreds of fibromyalgia and ME sufferers in Malta find themselves trapped in.
Source : http://www.independent.com.mt/articles/2018-06-02/local-news/FIRST-Tired-and-in-pain-but-little-recognition-6736190363Thanks you for read my article Fibromyalgia Awareness Month 2018