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Lack of support and understanding adds to effects of disease says Paul

ME sufferer feels like ‘a criminal’

By Claire Tennyson

A SUFFERER of myalgic encephalomyelitis, more commonly known as ME, has said he has been made to “feel like a criminal” for suffering from the affliction.

The condition, which is disregarded by some medical professionals, has presented Paul Hegarty-Walsh with obstacles he never ever thought he would have to try and overcome.

The 41 year old, who lives off the Ormeau Road, claims there is not enough medical help available specific to ME to aid those who battle with the ailment.

The former IT professional was diagnosed with ME four and a half years ago, two weeks after his father passed away. From that point on his career was brought to a sudden halt.

“I have worked my whole life since I was 16 and gained many qualifications which I was very proud of and to have that taken away from me is very hard to deal with,” Paul said.

“When I am really under the weather I am totally bed ridden. One of the best ways to describe it is how you feel after you have had a proper flu.”

Paul said he often feels completely weakened and drained by the condition and describes it as feeling like he is “attempting to walk through custard.”

Speaking of his life before ME took hold, Paul said: “I had a good job working in IT and as soon as I was diagnosed I had to give it all up.”

Paul’s wife Mary, who he calls his “rock”, has managed to obtain a work schedule which allows her to work from home and care for her ailing husband.

“If Mary’s boss was not as sympathetic to my illness then I am not sure how I would cope.

“Sometimes when the illness has really got a hold on me and Mary is unable to work from home I find myself having to keep a bucket beside the bed that I can use as a toilet.”

Admittedly, Paul said he would not be a chronic sufferer like some others but would say when he is at his worst he can be in bed for up to four or five days in one week.

“Even when I am having a good day I wouldn’t say I would be firing on all cylinders, there is still a weakness.”

His praise for the Northern Ireland ME Association is endless saying “without them I don’t know where I would be.

“The NI ME Association have provided benefit support for me when it was taken off me by the government because they deemed me fit enough to work which was nonsense.

“I would not wish this condition on my worst enemy and when I was told my benefits would be cut I became so stressed that the effect on my illness became astronomical.”

Asked whether he thought there was a lack of medical staff that deals specifically with the condition, Paul said he felt it was “totally lacking”.

Paul’s day-to-day life now is taken up with interests such as reading, listening to music and watching history or cookery programmes.

“I do feel guilty about not being able to go to work, I think it is that sense of male pride that takes over sometimes but my wife is very supportive and I would be lost without her.”

Paul who said he contributed to society his whole working life feels the government and society have failed to step up to the mark in helping him throughout this difficult period in his life.

“Instead I have been made to feel like a criminal for having ME.”

It is estimated there are more than 7000 people in Northern Ireland with ME and most of them are treated by their GP, as there is no specialist unit within the NHS to deal with the illness. In Belfast City Hospital there is a weekly clinic that sufferers can access however to avail of that service, patients need to be fit to travel and have to be referred by their doctor.

A DHSSPS spokesperson said:  “The HSC Board has recently established an Older People and Physical Disability Commissioning Team which will deal with, amongst other things, ME/CFS. The team has already met with a number of ME/CFS service user representatives and discussed possible areas for service improvement.

“A regional workshop was also held on March 2 and included the HSC Board, PHA, HSC Trusts and patient representatives.”

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