When it’s an effort to just get out of the bed
IT’S A DEBILITATING CONDITION FOR ITS MANY SUFFERERS. SYMPTOMS ARE VARIED WITH MEDICAL KNOWLEDGE REALLY ONLY IN ITS INFANCY ABOUT FIBROMYALGIA, PAUL DEERING TALKS TO CATHERINE KEANEY ON HOW SHE COPES WITH THE ILLNESS
It’s usually worse in the mornings says Catherine, referring to a condition she has slowly got on top of after several years fighting it head on.
Morphine patches for pain, an inability to get out of the bed, fatique, depression and general lack of interest are just some of the symptoms of fibromyalgia.
There’s also what is termed the fibromyalgia fog as it called which can occur any time of the day but mainly first thing in the morning.
“I could wake up and if there was someone talking to me and asked me something it would take me a minute or two to digest what has been said and another minute to reply.
“People can interpret this as me simply not answering, that I have a hearing problem or that I’m ignoring them or that I’m simply stupid,” says Catherine who lives in Manorhamilton.
As the day progresses the fog can descend at any time
Fibromyalgia 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.
It took a while for the illness to be recognised with many in the medical field believing it to be psychological in nature as symptoms could be seen as depression
It’s far better known in the US and in 1993 the World Health Organisation finally distinguished fibromyalgia from other rheumatic disorders.
The medical world is leaning to seeing it as a disorder of the nervous system rather than of the musculoskeletal system as was previously thought. There’s no specific cure with each of the symptoms being so varied but it’s a illness that many are coping with through trial and error.
Catherine was born in London of Irish parents, Joe and Kitty. Joe had left North Leitrim as an emigrant and Kitty was a native of Offaly.
They ran a pub in London and for the first five years of her life Catherine lived there where they were involved in the Irish community.
Catherine’s parents returned to Kiltyclogher in the mid 1970s. “My father decided it had become just too busy and stressful and sold the pub,” says Catherine.
Her father bought a pub in Kiltyclogher and it was more of a social thing than anything.
London became a draw for Catherine again after she finished school and found work hard to come by in the area.
In 1987 she left. She wasn’t alone. Some 20 other young people from the area left at the same time.
“Most stayed in London, very few ever came back to North Leitrim,” says Catherine.
In many ways it’s the story of North Leitrim. Lack of jobs and emigration of its young peole. The story hasn’t changed to this day.
However, for Catherine the draw of home was too much to resist and returned to Kiltyclogher in 1995.
“At the time there were so many new faces in the area with these strange accents due to rural resettlement and there was a great buzz. There were some 30 houses in the village’s main street inhabitated at the time but this has dwindled to about four now. The pub was sold. Her dad died in 1998 and her mother two years ago.
A life changing event occurred to Catherine in 2003 when she was involved in a major car crash. She describes it as being “the beginning of the end of my life.”
As a consequence she had to undergo three major back operations. “It saw the collapse of my immune systems and I suffered nerve damage,” she says.
A variety of symptoms began to hit her out of the blue.
“I mainly had pain and fatique and it was being put down to depression. The back I had back trouble too I was just thrown medication and was basically told to get on with things.
“I found my life was on hold. I couldn’t plan anything for the next five years. I just couldn’t commit to anything on a weekly basis as I had no idea how I would be feeling on any particular day.
“Some days I literally hadn’t the energy to get up and I spent many days in bed. The first three to four years were bad and I lost friends because of it. When I didn’t turn up for something they’d lose interest and couldn’t really understand what I was going through.
“I didn’t know fibromyalgia existed until about four years ago. I was on the phone and I got this bad pain in my left arm and also pins and needles. I dropped the phone. A couple of days later I dropped a hot cup of tea.
“I panicked and went straight to my GP who told me I had a condition called fibromyalgia.
“He was great and I also did a bit of research and the condition comes under the auspices of the Arthritis Ieland. There’s also a Facebook page on the condition but there’s no support group, certainly not in this area. In many ways it is a new disorder.
“I undertook an information course on fibromyalgia last year and it was very informative but they’re still only learning about it. It’s a learning process with it,” she says. And, you just learn to cope she says. Catherine began to find relief from her symptoms through adopting a holistic approach. Rekki, in particular she found good for calming her anxiety.
“You learn to accept the condition and for me I had to toughen up,” she says.
She’d like to set up a support group in the area so people can get in touch, discuss their symptoms and share what works and doesn’t work.
Catherine also stresses how social interaction is important too for combatting the effects. She finds social dancing brilliant and she sings and plays music. She always tries to play music in the background as it releases positive dopamines in the brain.
Even a trip to the library in Manorhamilton is a focal point that is good for keeping depression and anxiety in check she says.
“Exercise helps too. I’m very positive and I am in a much better place than three to four years ago.
“I’m no longer taking medication and I’m very proud of that. I had been on very strong morphine patches for the pain at one stage. Two weeks after stopping using them I was feeling strong withdrawal symptoms. I was on the patches for about a month but to be honest I wasn’t feeling much relief from the pain.
“I’m not a pill popper but I just felt it wasn’t working for me and I told my GP this so I just stopped. It’s very important for me to be not on medication. I was prescribed anti- depressants too but I wasn’t on them for long and again I wasn’t feeling any benefit. ” she says.
Catherine says that when she first found out she had the illness it didn’t feel like she had much of a future but the holistic approach was vital.
“I have myself totally to thank for turning things around. I’ve a great fighting spirit. The only person who can help is really yourself.”
Vitamin B is important and she’s also cut out sugar. Stress is not good for fibromyalgia either. However, the vagaries of the Irish weather can play havoc with the condition too. A simple cold can lead to flu or chest infection.
“I found the rainy weather is far worse. Lst summer was particularly bad. I spent most of it in bed curled up with a water bottle. I’d look out the window and there just wouldn’t be a desire to get up. When it’s frosty it’s no problem. So, I don’t ever want to see a summer like that again. I didn’t even want to speak to anyone on the phone and you’d get into a rut quite easily as a result.”
Ideally, six months of the year in Spain would be ideal.
Such are the effects that working isn’t really an option. It’s literally one day at a time.
Catherine is optimistic about the future given that fact she has conquered it to a great extent and knows that works.
“I don’t think there’s a cure but I believe you can on top of it. You just never know though when you might get a different symptom and you just target each one as you get it.”
Anyone who may be interested in contacting Catherine about her condition and maybe the possibility of setting up a support group can email her on redrover2015@ yahoo. com