May 12th is International ME/CFS and Fibromyalgia Awareness Day. Myalgic Encephalomyelitis (ME) also known as Chronic Fatigue Syndrome (CFS) is a debilitating illness which affects around 250,000 people in the UK, with around 25% house or bed-ridden. There is no known cause or cure, and with the severity of symptoms fluctuating for each individual it can be difficult to diagnose and manage.
May 12th is the chosen Awareness Day as it was Florence Nightingale’s birthday. Renowned for her nursing, it is lesser known that Nightingale is thought to have suffered from ME. An inspiration to all, it is on this day that sufferers worldwide speak up about their illnesses, and raise money to fund much needed research.
Around 4 years ago I was diagnosed with CFS/ME. I had just started my A-Levels at college, and after a bad case of flu suddenly found my body fighting against me, unable to do the simplest of tasks and facing new challenges every day. I tired easily, did not recover after rest, struggled with a lack of concentration and memory, suffered joint and muscle pain, general aches and malaise, and my immune system seemed to have given up as I was struck down ill at every opportunity.
The battle for a diagnosis began, and after countless tests the following year I was given the label CFS/ME. As is the case for many, this wasn’t the end of my journey. After being told by a specialist clinic that I was doing too much and the only solution would be to cut back and reconsider my plans to attend University, I decided to manage the illness alone. There are a variety of recommended methods which can help ease symptoms, from graded exercise to cognitive behavioural therapy, but with such a complex illness and wide scope of symptoms these don’t work for everyone.
Since then I have had a roller coaster of ups and downs. On the best days you would hardly know I’m battling this invisible illness, on the worst I can’t make it out of bed. There’s a constant feeling of difference, and a lack of understanding from those around you. Originally, I tried to fight an uphill battle and not be held back, but soon learnt that this wasn’t working. It didn’t help that I’m not one to shout about what’s wrong, I’d rather struggle in silence and pretend to be ‘normal’ over drawing attention to myself. Now I’ve realised my limitations, and the ways in which I have to adapt because of CFS.
It’s not been easy, and I can get really run down with the feeling that things are out of my control and I can’t reach my potential. However, I am still at University, studying full time on a demanding Mass Communications course, working part time, and participating in many different voluntary activities including fundraising and magazine editing. Soon I will face the biggest challenge so far, as I take off alone for a study abroad year in California.
I haven’t let my illness stop me, but without a cure and an uncertain future, the best advice I could offer is to just live each day the best you can. Some days this might mean taking a step back, but simply take the time to be proud of the things you have achieved, and you’ll find the strength to work towards your goals. Our journeys might take longer than most, and we might need to rest along the way, but it doesn’t have to mean the end of the road.
So on May 12th, and at every opportunity you can, speak up and raise awareness of this complex and often disregarded illness which can strike anyone at any time. All we need is support and understanding, which isn’t really much to ask, is it?