A City woman’s determination to push back against a serious disease to enjoy a full, active lifestyle is nothing short of inspiring.
Deborah Campbell, 46, was diagnosed with Ankylosing Spondylitis (AS) eight years back, and she recalls the symptoms coming on quite quickly.
“About nine years ago, I went to see the doctor because my hands were sore,” she explains. In a matter of just weeks, she couldn’t walk. “It was quite debilitating – really quickly. And I didn’t even really know what was going on,” she said, adding that doctors sent her on to a rheumatologist.
“I was quite fortunate that my care was quite quick.” The diagnosis followed, and so did the severe, stabbing chronic pains that jolted her virtually every time she moved. “It affects your back and your neck, and things deteriorate.”
Sleeping can also be a struggle. Campbell recalls waking up every few hours and trying to get comfortable. “It would take half an hour or so just to get out of bed.”
Described as a debilitating autoimmune disease that causes extreme spinal pain and stiffness, AS can mean running or going to the gym takes on a whole new meaning when you factor chronic pain into the equation.
AS triggers an individual’s immune system to attack joints in their spine resulting in extreme stiffness and pain. In some cases, the spine actually fuses together. Approximately 150,000 to 300,000 Canadians have AS and the majority of cases are diagnosed between the ages of 15 and 30.
“Ankylosing Spondylitis is not really that well known,” she said. “We take the same medications as cancer patients do – our medications are chemotherapy-based,” she said, adding that one of the biggest challenges post-diagnosis is finding the right medications.
“So when they approached me about talking about this, I said yes because there are so many of us and there isn’t a network (in place). So let’s try and make a difference.”
But in chatting with Campbell, it’s easy to see that she’s not only a strong person, but also has an irrepressibly optimistic outlook as well. “You just take it and deal with it – that’s kind of who I am.
“In my head, I said I’m not going to settle for this. And that’s the key – 90 per cent of this comes from (your perspective) – how you are going to deal with it?”
Not that it isn’t awfully painful – and consistently so. But as Campbell points out, she chooses to not dwell on it. And she has opted to be as active as possible, and found that the positivity that comes along with that goes a long way in impacting how she feels from day to day.
During one low point when she was confined to a wheelchair for a time, she decided to try out her treadmill. “My husband carried me downstairs and put me on the treadmill and I just started to walk. There was a lot of crying and a lot of yelling – but it was good,” she recalls. “That was good, but then I thought I need to run.”
Over time, under the care of doctors, she did begin a running regime and eventually launched a Learn to Run program at Wild Mountain, a business she co-manages in Bower Mall. “I wanted to run again, and I wanted to feel that the disease hadn’t taken over.”
Within a matter of weeks, she entered her first half-marathon. “It was really, really emotional for me.”
With AS, it’s not an easy thing to just embark on any kind of exercise program. “The first thing you want to do is stop, because everything hurts. But you have to keep moving.” Still, she does point out that running isn’t necessarily suitable for every person with AS. But movement of any kind is helpful, because, “As soon as you stop, the disease tends to take over.
“It’s so easy to stay home because you feel awful. And you just don’t feel like going out. It took my husband to help me get dressed in the morning. To help me do my hair. But it’s such a great mental release if you can get out and do something – it’s an outlet,” she explains.
Earlier this month, people across the globe marked World AS Day on May 3rd, and Campbell has been busy raising awareness of the disease and encouraging others suffering from chronic illnesses to stay as active as possible.
Meanwhile, her commitment to fitness is inspirational and she can offer useful tips for making fitness a fundamental coping strategy. That’s where her running class comes in, for example. She really wants folks to see that unexpected circumstances in terms of a person’s health don’t always have to place such strict or severe limitations on them. There is always room to dream and expand one’s horizons.
These days, she is indeed looking straight ahead – and she has no time for anyone’s expressions of sympathy. “I don’t want that from anybody at anytime.
“It’s about keeping a brighter outlook – don’t settle for anything less.”
She’s focused and determined to make the very most of every single day, and that also means surrounding herself with positive people.
“I decided a long time ago that I was going to define this.”