BY NUALA MCALOON
Sixty-one-year-old Stanley Parkinson from Brookeborough has suffered from M.E. since 1999. He suffered for two years with what he describes as 'devastating effects' before he was finally able to put a tag on an illness that limited his life for the best part of eight years.
It is only within the last year that Stanley has begun to feel somewhat better, at last being able to have more energy to do the simple things many of us take for granted.
A largely silent and deceiving illness, M.E. (Myalgic Encephalomyelitis/ Encephalopathy) is chronic and fluctuating. It is also known as Chronic Fatigue Syndrome (CFS) and is sometimes diagnosed as Post Viral Fatigue Syndrome (PVFS). The illness affects many parts of the body such as the nervous and immune systems. The most common symptoms are severe fatigue or exhaustion, problems with memory and concentration and muscle pain.
Equally frustrating for those who suffer however, is the fact the M.E. remains to be an illness that the public at large is unaware of. We know the name but don't seem to know enough to care, our ignorance portrayed by a lack of respect for something that for many is debilitating, severe, and long-term.
Prior to M.E., Stanley was a self-employed gardener. Once hit by the illness however, simple tasks such as tying his laces and moving from the armchair became a struggle. Jobs that took a day and a half, rolled on and on before he was eventually forced to come to a halt.
"I didn't know what I had for two years. I was not aware from the symptoms what was wrong but I was fatigued mentally and physically. Gradually I felt I couldn't cope. Things like driving, going on an errand, I was totally mentally and physically fatigued. Driving small journeys were trouble, I would suffer from brain fatigue and I was afraid that I would do something foolish on the road.
"I also had severe pains with it, muscular pains mainly in my arms and shoulders. I had infections, allergies and had to deal with each symptom differently."
But with a lack of medical awareness, Stanley was unable to make himself aware of what he was suffering from.
That was because there is no medical test available to confirm a diagnosis of M.E.
" I was angry but it also affected my self-esteem. My wife was out working and I was trying to be useful, doing things like making the dinner or doing the shopping, pushing on..."
Doctors can diagnose the illness by taking a careful medical history and carrying out tests to rule out other possible conditions but it is likely that one will have to see their doctor several times before a diagnosis of M.E. is confirmed. A doctor should be able to give a provisional or working diagnosis quite early on and by six months a diagnosis should be confirmed or ruled out.
At his worst, getting in and out of bed became a chore, and even after sleep, he found there was no recovery. Dragging himself out of bed after a period of rest was equally as hard as getting back in.
"At my worst, there was too much to think about. My wife was working and I would try to do something like the dishes and I would need to sleep for another few minutes afterwards. I was unable to cope with it, I would have to lie down. The light affected me as well, sometimes I would have to go to bed as much as three times a day. I was tired mentally, I had no concentration and no interest."
So along with his symptoms, Stanley also began to suffer from clinical depression.
"It wasn't a dark depression, I was totally fatigued and I didn't have the energy to do anything so it was total frustration."
Meanwhile, Stanley was with met with a total lack of understanding from others, albeit, he suggests that nobody could fully understand if they didn't experience the illness themselves.
But people's comments didn't help.
"I got angry when people said things like 'buy a pair of running shoes' when I was the opposite for being fit to run. Others said 'we're all tired at times but have to keep going' or 'get yourself together'. I was angry but it also affected my self-esteem. My wife was out working and I was trying to be useful, doing things like making the dinner or doing the shopping, pushing on when I shouldn't have been."
With no magic bullet to cure M.E. there are a number of other approaches that can help. Medical opinion differs on treatments for M.E. and Stanley found that such treatments were sometimes frowned upon. He turned to naturopathy to help him along and found that alternative natural therapies worked better for some of his symptoms.
While his life has been restricted somewhat in recent years, Stanley feels he has learned a lot from M.E.
"I take it a day at a time and do the best I can. I sympathise with others and am more tolerant. I have great faith and thank God each day."
Stanley has also sought comfort in the Fermanagh M.E. Support Group.
"It helps because you are with people who understand, you are heard, listened to, and can relate to those people."
Emerging the other side, Stanley now has a more positive outlook on life. He has experienced what he describes as 'quite a good last year'. He has been able to do more and has felt more physical and mental improvements. But, he still has to be careful not to overexert himself, something he says, can be difficult to control.
"For a long time I was in denial, I wanted the old person back rather than to recognise who I am today. But M.E. will beat you. You have to respect it, own it, and say this is who I am."
