The painful truth about living with fibromyalgia

Mother-of-five Eileen Howard has been battling fibromyalgia for years. At least Lady Gaga’s openness about the painful condition has put it in the public eye, writes Olivia Kelleher.

A wedding invitation on the doormat is not always a welcome sight. Sometimes a guest is socially anxious or conscious of cost.

But when you have fibromyalgia your concern is very specific. Will you make it through the long and arduous day?

Mother-of-five Eileen Howard has lost count of the number of family occasions that have been marred by her condition.

She recalls an anniversary party for a friend where she got all dressed up for the festivities but had to abandon her plans at the last minute because of illness.

“Fibromyalgia is unpredictable I can tell you that. This happened before my diagnosis 15 years ago. There I was in my dress and I got a notion to put on some fake tan. I am very pale and had never worn it.

“I put it on and started to feel really bad. I was on the floor from it. Turns out it was the chemicals in the tan. I scrubbed it off but there was no going to that party. I was too sick.”

Fibromyalgia is defined by widespread chronic pain, as well as a broad spectrum of related symptoms including fatigue, cognitive dysfunction, and reduced physical function.

It is a condition affecting the soft tissues. It tends to be seen predominantly in women but can occur in men, and in all age groups.

Eileen who lives in Killaloe, Co Clare, also remembers missing a school Christmas concert because of the condition.

She was worried that her son would be looking for her from the stage but pain prevented her from attending the event.

However, people with fibromyalgia are nothing if not resilient. On a good day, Eileen (56) makes huge inroads in her garden. However, she knows that the next day she may not be able to lift the kettle to boil it.

Prior to her diagnosis, she spent years wondering what was causing her migraines, her debilitating pains and aches and general unwellness.

“You think you are going mad. You can be physically and mentally wrecked from it. I keep my bright side up because I have a wonderfully supportive husband, family, friends and local community.

“But I can throw on a bit of mascara sometimes and go out and meet someone and they think I am grand. There can be pain but you look okay. I wouldn’t be able to do a nine to five job. I might be grand one day but I would be fired the next because I would be too sick to go.”

In spite of family support, Eileen marvels that she ever managed to rear five children while battling fibromyalgia. She says naturally it is hard for a mother to explain why they can’t get up to walk their kids to school.

“I feel sorry for people with fibromyalgia who have kids and no support. Because even if you are sick the uniforms still need to be washed. I try to live actively in my community but I also know that I have to pace myself.

“Sometimes, however, I look at people who are able to do so much and you feel like its half a life. But in general, I consider myself to be very lucky.”

Fibromyalgia hit the headlines recently when singer Lady Gaga cancelled a world tour arising out of her difficulties with the condition. The Italian-American singer has expressed frustration at the invisible nature of the illness.

Unlike say a broken leg fibromyalgia lacks an obvious physical representation to highlight the pain to the community at large.

Eileen says Lady Gaga made the right decision and that it is normal to “beat yourself up and punish yourself” as you struggle with the condition.

“You learn to say no and that it is all right to say no. It is a lonesome illness. I applaud her (Lady Gaga) for cancelling her tour. It is ok to say ‘No I can’t do this’. I try to live a normal life and there is more understanding of the condition now.”

Eileen has worked a lot with support groups and regularly fields calls from men and women who want to discuss their illness. She says sometimes people lose friends because of their fibromyalgia.

“You could go to a coffee morning one week for one friend and not go to a coffee morning for another friend the next and people don’t always understand that. People can drop out of the circle of someone with it. I kind of have adopted an attitude of what doesn’t kill you makes you stronger. It’s the little things that can get to you.

“I love to see a full line of washing hanging up. But I also know that I could cripple myself doing it!”

As for those wedding invitations Eileen just received a major boost having made it as far as Belarus for the marriage of her son, Luke, to a local girl.

“Ah, it is lovely. They met when she was about two or three because Anna used to come stay with a friend of mine with the Chernobyl group. They were mad about each other when they were tiny and then they reconnected years later. We were treated like royalty in Belarus. A lot of the celebrations were based in the home and a hotel and I was able to pace myself.

“I even got lucky with the nice comfy chairs in the airport. I hope they are really happy. We are so happy for them.”

• Further information on fibromyalgia can be obtained at www.fibroireland.com.