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Episode Description:
Arthritis can disrupt many aspects of a person’s life – from work to exercise and leisure activities, mental health and more. Medications play an important role in controlling inflammation and symptoms, but what else can people do to regain control in their day-to-day lives?
A healthy diet, exercise, sleep, lowering stress and finding balance can all impact arthritis symptoms. However, there is no one-size-fits-all approach to self-care when living with arthritis.
Arthritis is something you can learn to live well with once you figure out how your disease is impacting you personally
Dr. Catherine Backman
Episode Content:
At Arthritis Research Canada, we’re conducting research to look at the impact of arthritis on everyday life and to develop tools, resources and programs to help people overcome challenges caused by their disease.
In Episode 12 of the Arthritis Research Education Series, we dive into self-care research and strategies for everyone from the newly diagnosed to those who have lived with arthritis for decades.
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Content and Topic of Research
Arthritis is a chronic, lifelong disease that causes uncertainty in daily life – making it hard for people to care for family, manage work, participate in leisure activities and more.
While research to find a cure and new medications is important, people also need self-care solutions to deal with challenges caused by arthritis in their everyday lives.
Researchers at Arthritis Research Canada cover the gamut of health services research, including practical research that helps people thrive despite arthritis. What self-management or self-care strategies work? What types of physical activity can help? What modifications or adaptations in the workplace or in the home enable people to live productive and satisfying lives?
Learn more about some of this critical research.
Senior Scientist, Arthritis Research Canada
Dr. Catherine Backman is Professor Emerita in the Department of Occupational Science and Occupational Therapy at the University of British Columbia and a Senior Scientist at Arthritis Research Canada. (The “emeritus” title is a fancy way of saying she’s retired from UBC). An occupational therapist, she taught in the UBC occupational therapy professional program for many years, and supervised rehabilitation sciences graduate student research.
Catherine’s studies at Arthritis Research Canada focused on the impact of chronic illness on participation in life activities (such as parenting and employment), disruption in activities, and the effect of rehabilitation interventions. A particular interest was how people experience/balance life roles and occupations – the very practical implications of getting on with life despite arthritis.
Are you looking for ways to overcome challenges caused by your arthritis? If so, you’ve come to the right place for self-care advice.
Please review the frequently asked questions, videos, articles and other resources below that can help you regain control of your life after an arthritis diagnosis. As arthritis symptoms can fluctuate over time, people who have lived with arthritis for a long time may also find these resources helpful.
For some people, “self-care” is everything they do to take care of themselves and live a healthy lifestyle. For others, it means some very specific activities. More recently, people use the term “self-care” to refer to their physical, emotional and psychological health.
Many types of arthritis are lifelong conditions that cause ups and downs or uncertainties in daily life. Arthritis can disrupt how a person takes care of their family, how they manage work, what leisure activities they participate in and so much more. “Good days” and “bad days,” or ups and downs, can have a significant impact on a person’s ability to live well, despite having arthritis.
Think about what’s most important for you (what you need or want to do) and what actions or behaviours help you feel your best (regular yoga or cycling, a cup of tea, time to knit, a good night’s sleep). Then, allocate your time accordingly. It takes some practice to plan. You may find the following resources useful:
Yes! Take it slow, one thing at a time. Think about the week ahead and identify just one thing you want to do for your own self-care, put it in your schedule or commit to doing it, and do it! Choose something that you feel 80 to 90 per cent sure you can and will do, not something too challenging. Do just one or two things each week for a month. If you missed one or two, that’s okay, continue aiming for those for another month or reduce them to something a bit easier. If you successfully did something for your self-care and it worked out, keep doing it and maybe add one more new habit for the next month. Let’s say you want to walk in nature more: choose your location, shoes, and the day and time, and do that every week for a month. Then step it up to longer walks, or more frequent walks, walks with friends, whatever feels right to you, for the next month. Adjust your new walking habit to meet your goals by adding a little at a time, or respect how you feel and do a little less if need be. The important thing is to start.
Tylenol (acetaminophen) reduces pain and fever, and Advil (ibuprofen) reduces pain, fever, and inflammation. Talk to your doctor, nurse practitioner, or pharmacist about which is right for you. They will consider your unique situation (e.g., your symptoms, other medications you’re taking) and whether or not you need to take these medications or something else.
Regular physical activity can lift mood and support mental health. It helps people maintain strength, flexibility and mobility so they can continue to do the things they need and want to do. A life balance is also important. People should consider where they want to spend their energy and set priorities. It’s helpful for people to consider what gives life meaning and satisfaction. Everything in moderation to sustain a healthy lifestyle. Delegating tasks to other family members can also be helpful.
It’s not uncommon for people living with arthritis to experience periods of depression. Constantly dealing with uncertainties in life can impact a person’s mental health and can be exhausting. It’s very important to take mental health breaks from time-to-time – especially when living with a chronic disease.
It’s probably different depending on who’s criticizing you and how much you want to share with them. For people who are regularly part of your life, like family and co-workers, you may want to explain a little more about your arthritis and how it has ups and downs (in pain, energy, mood) and that it’s unpredictable. Some days you simply need more rest or more help than other days, that you’re doing your best, and you really appreciate their help and understanding. While arthritis symptoms are sometimes outside your control, you can work on reducing the guilt and shame you feel: we all have a tendency to talk or think to ourselves that we’re not doing enough, not disciplined enough, not strong enough – negative thoughts. When was the last time you said to yourself “I’m amazing!” “I nailed it!” “I just kicked arthritis in the keester!” The same encouragement and coaching phrases you might use with kids or friends to help them feel better or more confident can be used as self-talk too.
It’s hard! You might need to reduce or cancel some of your planned activities, bump something to another day. Do something that has relieved some of your fatigue in the past, such as planning a nap, some gentle exercise, or another way to “take a break” or give yourself some “me time.” Tell people who may be expecting you to show up or do something that this is a low-energy day and you may have to do less or postpone, and try not to feel guilty about it. Pace yourself, make a note of what works (or not) to adapt to fatigue so you have ideas to try the next time you feel this way.
There have been a number of studies that show that more severe types of arthritis – like rheumatoid arthritis, ankylosing spondylitis, lupus – can have a significant impact on how people organize their day-to-day lives and can also disrupt their roles in life. A parent with arthritis, for example, might not be able to deal with buttons and snaps on sleepers. But doing traditional parenthood activities does not make someone a mom or dad. It’s being satisfied as a mom or dad. It’s bigger than whether someone can do up snaps or get a diaper on or engage in physical play. Instead of playing the sport, a person can applaud from the sidelines. While arthritis disrupts the way a person does things, it shouldn’t disrupt the way they feel about fulfilling different life roles – employee, partner, parent, etc.
We know from stress management studies that, while people are resilient, they can’t deal with prolonged periods of severe stress. In fact, there is a connection between stress levels and severity of arthritis symptoms. However, people with arthritis and other chronic diseases can learn to recognize periods of stress that are beyond normal or when they have reached a threshold where they need to do something differently. They can also learn to reach out for support in managing the daily responsibilities of life with a chronic disease.
Most people are familiar with the saying, “Everything in moderation.” And most people have more than one identity. We identify as a parent or partner or child or worker or boss. We can also identify based on the things we like doing in life – golfer, cyclist, etc. Some people can carry a very strong identity or belief in the way that they stay healthy is because they are a weekend warrior or exceptional athlete and then a disease like arthritis interrupts that. Someone might have been a marathon runner or cycled to and from work every day and arthritis then gets in the way. They can’t fulfill those ambitions anymore because of the symptoms of their disease. For some people, finding a substitute physical activity is fine. For other people, it can be a really difficult adjustment. People need to consider what is important to them and what it was about specific occupations and activities that they can no longer do that told them who they were. They can then find a substitute or do activities differently and find balance. For example, maybe someone cycles for short periods on weekends instead of cycling to work every day.
Occupational balance is defined as doing the right activities, in the right amount at the right time. This will be different for everyone.
A person’s support team can include health and other professionals like a rheumatologist, as well as kinesiologists, physiotherapists, dietitians, occupational therapists, vocational counsellors, social workers, physical trainers, etc. Informal team members, like friends and family, are also important.
Most rheumatologists will work as part of a team and connect you with nurses, occupational therapists, physical therapists, social workers, dietitians and others who work with you to develop a comprehensive and integrated plan. Increasingly, primary care teams are also an option, where your family doctor or nurse practitioner works alongside a multidisciplinary health care team.
Generally, a healthy diet helps people sleep better, move better and have a better response to the ups and downs of daily life with arthritis, including symptoms.
A dietitian can help identify foods that have anti-inflammatory properties or identify foods to avoid. For example, blueberries and raspberries are a good choice. In general, an eating plan with an abundance of fruits and vegetables, some protein, complex carbohydrates (whole grains), and “good” fats – like the Mediterranean diet – is a reasonable option for most people.
Because of the different types of arthritis, as well as the different medications people take for arthritis, nutritional advice is specific to each individual.
People with osteoarthritis affecting hips or knees have delayed surgery and joint replacements by participating in regular exercise. If you are looking for resources to start your exercise journey, Arthritis Research Canada’s I START Toolkit can help. The GLA:D Canada program is also an excellent resource for people living with osteoarthritis.
Because arthritis is lifelong, what worked last week, might not work next year because you have different demands on your time. Symptoms can also change over time. You might have shifted your priorities and have different things you want to do. People should be responsive and adaptable. Consider what is most important “now.”
No, always consult your rheumatologist before making any major changes. There are also undesirable effects of suddenly stopping medications. For example, symptoms can flare. Always make decisions about medications with people who know about those medications. You can be captain of your own ship and make decisions, but you really want to take advantage of the expert advice that’s available to you.
Occupational therapists are a vital part of a person’s care team. They can provide guidance and options on performing daily activities and managing symptoms like pain, fatigue and more. We’ve put together a list of tips and advice that members of our Arthritis Patient Advisory Board have received from occupational therapists throughout their years of living with different types of arthritis.
Chris Pudlak was diagnosed with ankylosing spondylitis in 2016. At the time, he was only 36 years old and a father to three young children. Pudlak is now a member of Arthritis Research Canada’s Arthritis Patient Advisory Board and has published a book about his journey. It’s called Achieving Wellness Through Arthritis: How My Journey with Ankylosing Spondylitis Can Offer a Path to Wellness. We sat down with him to find out more about his book and journey.
Imagine feeling good one day and waking up in debilitating pain the next. For people living with inflammatory arthritis, this is an experience they know all too well: the onset of a flare. Julia is a member of Arthritis Research Canada’s Patient Advisory Board. She was diagnosed with rheumatoid arthritis in her thirties. Over the years, she has learned that prioritizing her health and well-being is key to getting through flares and living a full life with inflammatory arthritis. Discover her strategies for coping during a flare.
It’s normal to feel anxious as we navigate through uncertainty and it’s more important than ever to prioritize self-care during times of change. Here are some tips and coping strategies shared by the members of Arthritis Research Canada’s Patient Advisory Board.
OPINION: There is a limit to how much time we can spend in our jammies, streaming movies. Sit down with a tablet (paper or electronic) and sketch out a daily routine. Learn more in this Vancouver Sun article by Skye Barbic and Arthritis Research Canada Occupational Therapist and Senior Scientist, Dr. Catherine Backman.
Arthritis Life is a channel, podcast and resource created by Cheryl Crowe, a physiotherapist living with rheumatoid arthritis. This resource seeks to educate, empower and inspire individuals who have inflammatory arthritis.
Chris Pudlak is a member of Arthritis Research Canada’s Patient Advisory Board. After a year of escalating back pain, he was suddenly hit with severe arthritis in his hands, back, knees, and feet. Being in his mid-thirties, he was used to running 10Ks and cycling to work. Now, it took two hands, wincing through pain, to turn the key to the ignition in his car. After a diagnosis of Ankylosing Spondylitis, he was faced with a lifetime of illness and serious medications. However, he put his engineering hat on, started researching, and testing diets, activities, and lifestyles. He tried everything to get rid of his arthritis. It took years, but he eventually recovered and feels stronger than ever before.
Are you contemplating a step into parenthood and also live with inflammatory arthritis? Start with these resources written for patients by patients with arthritis. This resource has been co-developed with Mamas Facing Forward, who help moms and moms-to-be living with chronic illnesses embrace the unique challenges they face and learn to find strength from them. It has also been reviewed by CAPA Medical Advisory Committee and two leading health care professionals and researchers in the field of reproductive issues, parenting and rheumatic disease: Arthritis Research Canada’s Drs. Mary De Vera and Catherine Backman. Read these resources and get informed!
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