A COMPROMISED knee looks likely to prevent Kathleen Barry from taking part in this weekend’s The Echo Women’s Mini Marathon — but she will certainly be cheering on her friends and acquaintances who will participate in aid of Arthritis Ireland.
Kathleen, a long-time member of Arthritis Ireland, was diagnosed with rheumatoid arthritis 23 years ago when she was in her early 40s.
It was a terrible blow for the Cork woman, who at the time, was managing to balance a career as a medical librarian with all the demands of school-going children.
Recalling the time she sought a diagnosis, she says: “It was 1996 — but no doubt I had it before then — I had three children and I wasn’t coping very well. It was the fatigue really that got to me.”
Once diagnosed, she started on rounds of injectable drugs known as biologics. She had a bad reaction after six to eight months, was taken off that and put on others. “It’s been quite a rocky road”, she says.
Despite living with this chronic inflammatory disorder with life-limiting consequences, Kathleen is full of positivity, good humour (“a bit of a wicked humour sometimes”, she admits), wise sayings and sound advice, gently dispensed.
It seems she’s arrived at this point through acceptance of her condition. It’s a word that pops up several times during our conversation.
“I have accepted where I am. When you’re diagnosed first you don’t accept it. It takes a while.”
After Kathleen’s diagnosis, a nurse suggested she get in touch with Arthritis Ireland — then called The Arthritis Foundation — and it proved a very valuable suggestion.
“In a sense, they saved me”, she says of the organisation. “I’ve been a volunteer ever since. You talk to people with arthritis who have accepted it and you get to feel you are not alone.”
She is now a point of contact for others starting that journey that no-one chooses.
“I do talk to a lot of people on the phone when they are diagnosed first. With arthritis, you lose a lot of things that you’re used to doing and you struggle with work. People say, ‘I can’t do what I’ve always done’, so we gear them towards thinking, ‘Maybe there is something else you can do’. You have to grieve and then move on.”
Despite her symptoms, Kathleen managed to stay in employment by tweaking her schedule.
“Workwise, I was struggling but I was lucky to start working part time. Working part time though, your income goes down and you have to accept that. I took early retirement a year before I was due to be kicked out anyway,” she says, referring to the HSE retirement age of 65.
Living with a currently incurable autoimmune condition (meaning one’s own immune system is attacking itself), does she feel pain all the time?
“Not all the time, thankfully. I get darts of pain when I move my hand. Some days I’ll have a nagging ache in my limbs all day long.” And then comes the sense of humour:
“It reminds me of the song… ‘Every step you take, every move you make, I’ll be hurting’, she says, paraphrasing The Police song, adding, ‘Down to the toes, I’ll be hurting’.”
As well as rheumatoid arthritis, she has also developed osteoarthritis in her knee and knows she will have to face surgery at some point, but she is putting it off for good reason.
“If you’re going for surgery you have to get off your medication to let the immune system kick back in for healing. But then, with your immune system working, your arthritis gets worse.”
If that wasn’t enough, Kathleen has also developed chronic asthma.
“It’s another disease which kicks in when the immune system is down. You’re also more open to colds and flu as well. If someone is in hospital I might be slow to visit them because I have to be conscious of myself as well. You have to look after yourself better. You also have to plan things. If I have a big social event coming up I have to rest before it. I could still get a flare up; it’s unpredictable.
“You just have to take it on the chin and say, ‘What can I do?’ You have to ride the storm and it will settle down again.”
That’s the approach she also takes with the side effects of her gruelling medication regime, which involves two infusions within two weeks, every six months.
“If I get an infusion on a Friday I can’t function until Monday. The side effects are rotten. I dread it. I get awful headaches, I can’t sleep, can’t get out of bed and I’m like a demon.”
That said, she does urge people to seek diagnosis and treatment.
“Everyone reacts differently; it’s not a one-size-fits-all. If you break your leg, you set it, get a plaster on it and it’s grand. But with this, the doctors don’t know what’s going to work for you but luckily there’s a lot of medication out there. The sooner you’re diagnosed and you get on treatment, the damage will slow down. The longer you leave it, the more the joints are getting damaged. And there’s a three-year public waiting list now.
“I did get in before my joints got too damaged. Twenty years ago, the waiting lists weren’t too bad.”
Fortunately, Kathleen can still drive, albeit an automatic car these days. “It’s got a reversing camera because I can’t turn my head. I couldn’t live without a reversing camera now!”
However, she also acknowledges the things she can no longer do.
“One thing I miss is gardening.” It’s a shame considering she now has a sizeable garden, having moved from the city ten years ago to a newly built bungalow (to avoid the issue of stairs) outside Belgooley on the Carrigaline Road.
“I had great plans to set carrots and lettuce,” she says before explaining that it was only the local rabbits who benefitted from her crop.
“I knew in my heart and soul I wouldn’t be able to manage them. I do have a few herbs all right.”
In any case, her cooking methods have been simplified out of necessity, as any work with her hands is difficult. She is happy to find devices that will help her out.
“You should get gadgets with thick handles. You need thick handles to get your grip,” she advises.
Kathleen has also had to curb her style.
“I don’t wear heels anymore; I can’t. I used to love dancing; something I can’t do anymore. By 10.30pm I’m ready for the bed anyway.”
While dancing might be a step too far, it turns out that keeping active is just what the doctor ordered. It’s one of the things she learned from Arthritis Ireland and it’s advice she’d keen to pass on to others now.
“I can’t swim any more but I do exercise in the pool. Some people manage to cycle. We always say to people to start very gentle — but exercise is key.
“A lot of people think that by exercising they’ll make it worse but with the encouragement of Arthritis Ireland, we have a support group in Cork and we encourage people to exercise and get moving. Move it or lose it, we say.
“We have a self-management course and we go through the method of moving. Start gently with something you like doing.”
Lately, something the group is highlighting is Activator poles, walking aids designed specifically for rehab by an occupational therapist. Cork Sports Partnership is soon to carry out training in the use of the poles through the Arthritis Ireland Cork branch, with dates and venue to be confirmed on the group’s Facebook page.
Meanwhile, she speaks highly of the course called Self Management — Living Well with Arthritis and Other Related Conditions. “It’s like a workshop really, with a maximum of 20 people,” explains Kathleen. “It’s a very valuable course for people with arthritis, especially those who are newly diagnosed.
“But also for people who have arthritis a long time, it can change their perception and it helps them manage their arthritis.”
There are now three walking groups in the Cork area; one in The Lough every Tuesday morning, as well as routes in Crosshaven and Midleton.
Kathleen insists the social aspect is as important as the exercise, with walkers pausing for tea, coffee and chat afterwards.
“Some days, I can’t walk but I can sit in the bar or café and wait for the others. I won’t say, ‘I won’t go’.
“We can put our pains and aches aside and have a laugh”, she says.
Those in the walking group were in expert company recently when Cork sporting legend and physiotherapist, Rena Buckley, popped along to The Lough to help launch Team Arthritis Ireland for The Echo Women’s Mini Marathon.
The 18-times All-Ireland winner maintains the 6km mini marathon could be a positive goal for someone with arthritis, even if they haven’t been doing much exercise up to now.
Meanwhile, Kathleen’s physical abilities may be compromised but her voice is undimmed and she is using it to spread the word about Arthritis Ireland and give hope and encouragement to others. She advises people to be informed about the disease.
“The more you know about your own condition, the more you can say, ‘You won’t get me’. It takes over your life if you let it. Or you can live with it. Adjust your life; all is not lost. You’ll die with arthritis but not from arthritis.”
See visit www.arthritisireland.ie and learn more about the Cork branch at www.facebook.com/arthritiscork