ENNISKILLEN mother of two, Pauline Phelan, cannot trust her own body,
It is a reality she has been learning to come to terms with since being diagnosed with Lupus a year and a half ago.
Once the self-confessed ‘outgoing life and soul of the party’, Pauline has had to make various changes to her lifestyle in order to help her manage the disease which is attacking her immune system.
Fatigue, excruciating rashes and joint pain are just some of the symptoms she can face on a daily basis.
The poorly understood disease can range from mild to life-threatening -- a fact that has not been lost on the first-time grandmother who says emotionally: “I want to be there for my grandchild.”
Pauline first noticed the symptoms of Lupus when she was recovering from an operation to remove kidney stones.
“I remember I was lying on the couch at home and my hair started coming out in clumps,” says Pauline, “I was horrified. But I put it down to the kidney stones.
“I really didn’t want to have to go back to the hospital so I left it for a while to see if things improved.
“But my hair was getting thinner and lighter.”
When she presented to the doctor Pauline was suffering from other symptoms including mouth ulcers and a painful rash known as the ‘butterfly rash’. But Pauline had to suffer the signs and symptoms of Lupus for a year before she received an official diagnosis. 
At the same time, she was also diagnosed with Fibromyalgia.
“Once you are diagnosed with Lupus it is something you are always going to have,” she says, “But how you live your life after the diagnosis has a say in your quality of life.
“Lupus has changed my life forever,” she adds, “I have given up drinking, I don’t smoke, I can’t go on holidays now because the sun is really bad for someone who suffers from Lupus.
“I was someone who would have walked four to five miles a day -- now I could hardly walk the length of myself.
“I was one of the best jivers about too, but I just couldn’t do it now.
“Tiredness just comes over you all of a sudden.
“It just attacks your body.”
Pauline has suffered from depression as a result of the symptoms that have become a part of her life now.
“I find it so frustrating when people look at me and say: ‘Sure it doesn’t look like there is anything wrong with you, you look great!’.
“There is no understanding of the suffering.
“It is a pretty hard battle. And although I know my friends and family truly love me, they don’t understand.
“I can’t talk to them about it properly because they have always seen me as being strong and bubbly. But Lupus has made me a different person.
“You can’t plan for anything because you don’t know how Lupus is going to affect you day by day. You just learn to appreciate everything you have when you have it.”
She pays special tribute to a social worker whom she describes as her “Guardian Angel”.
“I was so thankful that she came knocking at my door because I felt I was able to sit down and talk to somebody about what I was going through.
“She is such a brilliant support to me. I don’t know where I would be now without her.”
Pauline finds she cannot trust her own body anymore and how Lupus will affect her each day.
“You don’t know what you are going to wake up to each morning.
“My daughter asked me to look after my grandchild a while ago. I am never on my own because my youngest daughter still lives with me.
“When she had dropped her off, I had put my granddaughter down in the living room and all of a sudden I couldn’t see her. I literally thought someone had kidnapped the child. It took weeks for me to get over that and I felt I had to reassure my daughter that it was safe to leave her child with me.”
Pauline says she is determined to reach out to others locally who suffer from Lupus and raise more awareness of what the disease means.
“I am trying my best,” she says, “But it can be hard for me to talk to other people and support them, when I am still learning about the disease myself.”
Shocked to discover there was no leaflet in her local surgery about Lupus, she has set up a ‘Lupus Support Group Fermanagh’ Facebook page to reach out to others.
“I want people to know that Lupus is nothing to be ashamed of and I want to say to people: ‘You are not on your own’.”
Although so many aspects of Pauline’s life have changed now, she is determined to “batter on”.
“Yes, Lupus has changed my life, but I am sill Pauline.
“It has also made me appreciate the things that truly are important in life -- family and friends.
“Whatever length of time I have left in this world, I intend to spend it with those that matter most.
“I would like to think that whatever happens, I can enjoy my time with my immediate family,” she says.