On Sunday November 13th 2022 I presented at The American College of Rheumatology annual scientific conference in Philadelphia.
This is my script and slides for my presentation. Not everything I said was captured in this script, some of it was guidance as I was speaking however you get the idea from the bullet points.
As someone living with rheumatoid arthritis, I used to be really intimidated by exercise. I was worried that my joint pain and inflammation would only intensify if I worked out. Now exercise is one of my favorite forms of self-care and treatment for my disease (as well as the comorbidities that come with it).
Time after time, I would aggravate my joints as I tried to mimic the movements of others in the gym or as I tried online workout videos. Moderate to vigorous exercise can sometimes trigger worsening fatigue, zapping me of my ability to do anything for days. I can’t afford that as a single mom.
I can remember going to an exercise class at a local community center that advertised it was accessible for all abilities. I struggled to complete the 45 minute exercise class because it used too high of impact exercises, was 45 minutes long without a break and I was quite fatigued that day. I was embarrassed because there were women older than me who could keep up easier than I could.
When you have a chronic illness like rheumatoid arthritis and it’s friends that tag along with it, concrete goals around physical activity aren’t always easy — or realistic — to achieve..
Aside from the physical limitations, there are time constraints that come from managing a chronic illness. There are days where I have back-to-back medical appointments that often mean I can not exercise the same day as them. `
Because I often couldn’t meet these fitness goals like a healthy person, I would feel bad about myself and resentful toward my condition — a mental and emotional game I didn’t need to play. Depression can hurt as much as RA some days. The two feed off each other.
Rheumatoid arthritis isn’t my only diagnosis, my RA comes with friends. I also live with:
These all impact everything I do, including being here today. The bad days can be a challenge when figuring out which of my conditions is causing me grief and how do I tackle this problem.
Thankfully what I do for one usually helps all the others but it does require a significant amount of pacing myself to not disrupt any of my conditions. It is a full time job self managing chronic illness. I can do everything right and still end up with a flare. That is the nature of this beast.
Now before you see me just as a person living with RA, I wear many different hats in a day, I am:
- A single mom to one child, a boy who is 10 next month and 4 cats.
- A content creator, writer, blogger, speaker, and influencer
- A patient advocate, health mentor, a research partner and a volunteer
- A gardener, a painter, a hiker, just to name a few.
All are impacted by my chronic illness.
I am a person living with inflammatory arthritis that impacts everything I do.
I judge each day based on the quality of life I have that day with rheumatoid arthritis. I have good days, bad days and days that sort of fall in between the two. No day is the same with RA and all that comes with it.
My symptoms tend to heighten in the evenings, resulting in pain and fatigue, this can be out of the blue or because I have done too much. Mornings I am typically groggy and experience stiffness for no regular amount of time. I often have a mid afternoon crash but I can tell how bad a day is based on how early that crash comes – sometimes it’s in the morning on the bad days.
I try to get most of what I need to get done before 3pm.
What a good day looks like for me
- I can get what I need to get done or what I want to do with minimal pain or fatigue
- I sleep well through the night with little wake ups, a decent bedtime hour and not waking too early. I also don’t need a nap these days
- I can complete 7,000-10,000 steps a day
- I find joy and happiness
What a bad day looks like for me
- High fatigue with a need of more than one nap in the day and early bedtime
- The Wall
- Confusion, disorientation, fogginess
- Anxiety and depression
- Multiple areas with pain that I can not ignore and gets in the way of what I need or want to do
What those in between days look like
- One or no naps needed
- Only minor joint pain with no swelling or heat
- Treatment day that causes pain or fatigue but subsides in a day or two after
The worst days are the days I end up in the hospital. These days the only thing that matters is rest.
Living with rheumatoid arthritis for the last decade has taught me my triggers.
What my main triggers are
- My behaviors
- Sitting too long
- Bad posture
- Repetitive motions
- High impact activities on my joints
- Not pacing myself
- Bad diet
- The weather
- When my medications fail me
- Mental health
Participating in research has given me a deeper understanding of my health outside of what my rheumatologist or other healthcare providers can give me during short and infrequent appointments.
In the early years of my diagnosis I felt really lost on how to self manage my disease. There is so much overwhelming and often contradicting information online. I couldn’t find the answers I needed to things that mattered to me.
Am I doing too much, or could I be doing too little?
How much rest do I really need?
What are my triggers for pain and fatigue?
Does exercise really help rheumatoid arthritis symptoms?
Before I was diagnosed with RA in 2015, I was overweight, struggling to do simple tasks like walking 5 minutes to the train station, or grocery shopping around a large store.
After my diagnosis I got into exercise because it was recommended in articles I read about RA but couldn’t really find clear guidance on how someone with rheumatoid arthritis should exercise. I was mostly just doing the elliptical and trying out different strength training at home that I didn’t feel pain from but I wanted to know more.
When I joined the Arthritis Research Canada arthritis patient advisory board in 2018 and started participating in various studies conducted by their team I felt I started to really understand rheumatoid arthritis.
The studies on exercise were ones that really stood out to me and I was excited to learn from experts who actually understood my disease and other patients.
As a participant in the OPAM-IA I started to track my physical activity using a Fitbit, and participated in online physical activity counseling with a physiotherapist.
I used the OPERAS app developed by Dr. Linda Li, which was linked to my Fitbit, to track my activity and my symptoms.
Doing so gave me a deeper understanding of my RA symptoms and answered many questions I had about my overall health.
I used the app and my Fitbit to track increases in pain or fatigue in order to see patterns I needed to address to my healthcare team.
Visualizing my sleep habits really showed me how sleep impacts my fatigue levels during the day. It also showed how much I can handle doing and how my mood is impacted if I don’t get a good night’s sleep.
With regular exercise I find it much easier to get seven to nine hours of good-quality sleep on a regular basis, with consistent bed and wake-up times than without exercise. Painsomnia or fragmented sleep tends to be more prominent when I am not active.
This is especially true on days I am dealing with higher than normal pain or stress.
Using the web/mobile app to track my health helped me see how my symptoms and physical activity levels change over time. Not only would I track my symptoms and physical activity but also my treatments to see when they started working or wearing off.
The lessons learned while tracking my everyday activity and symptoms taught me a lot about my disease patterns and is something I rely on when starting new treatment or going through one of the many bumps chronic illness causes. Life can also be bumpy. I was also able to take note of how my menstrual cycle impacts my pain, mood, and fatigue at certain times of the month.
Because of my participation in this study and using the app I am able to pace myself easier, know when I’ve done too much or too little, and know when I need to rest.
Thanks to the connections I’ve made by being a patient partner in research I learned about the updated Canada physical activity guidelines which helped learn about adding physical activity into my day rather than stressing over if I make it to the gym or not on some days. This combined with the work done by Linda Li changed my life with RA. I feel so much clearer about what to do in a day for my health.
These new guidelines promote a balance of activity, rest, and sleep, as all three play an important role in bettering your overall health and quality of life.
Rather than focusing solely on physical activity, these guidelines encourage me to engage in a healthy amount of sedentary activity and sleep. Which really speaks to me as someone who experienced a lot of emotions of guilt when I needed to rest because of my illness.
One thing the new guidelines really helped me with is my sedentary behavior.
Chronic illness can wipe me out for days on end which makes me want to live in my bed but that causes more pain and more fatigue. It’s OK if I have a bad day and am unable to make it to the gym, I just need to break up my rest time and keep moving throughout the day.
I feel these new guidelines and participating in research have helped me and my HCP team design exercise strategies that are tailored to my individual capacity, opportunity, and motivation to engage in physical activity and acknowledges my need for rest as someone with chronic illness.
After taking part in Linda’s work and learning more about the new guidelines I now each week I have a goal to aim for:
- Variety of physical activities that get my heart rate up and I enjoy performing for at least 150 minutes a week.
- Strengthen my muscles at least twice a week, especially targeting areas I have chronic pain. Participating in another study with Arthritis Research Canada on strength training with RA helped me with this one.
- Several hours of light physical activity which includes things I do like mow the lawn, do the dishes, laundry, sweeping floors, stretching or walking around my house to just keep moving.
These guidelines can help me have a good day with RA but what does it look like?
What I do to have good days with RA
- Exercise appropriately for how I am feeling that day – Especially the exercises my physiotherapist has suggested to target my pain.
- I created an at home gym – treadmill, weights, resistance bands, step.
- Pace myself – I take small breaks as I do stuff around the house or work. This helps me not over do it all at once.
- Use assistive devices
- Adequate rest throughout the day and at night
- Avoid triggers
- Hydration and Diet
- Volunteer – I created a support group for people living with arthritis in my city
- Create something
- Get fresh air
Some of the actionable steps I take to have a good day or manage my RA
If I can incorporate physical activity into my daily activities, it makes staying active with rheumatoid arthritis a lot easier.
Each day I do a scan of my body to see how it feels and then I decide how to move it. Does my body want a moderate to vigorous workout on the elliptical or a relaxing hike? Or am I feeling off and would benefit most from some stretching, a set of strength training, and a walk or two around the block? There are other things I can do throughout the day to stay active that count to my 150 minutes of weekly physical activity
- Getting off the bus a stop early or parking further away to log extra steps
- Performing two to three 10-minute workouts to break up my sedentary time without overdoing it
- I purchased a treadmill and various other exercise equipment that I use while I watch tv
- Taking stairs instead of the elevator
- Playing with my son, who loves to kick a soccer ball around or play basketball.
- Exercising during Zoom meetings so I am sitting less, camera off of course
- Wearing a health tracker that reminds me to get up when I sit for too long
- Doing chores, like gardening or cleaning
Because of arthritis research I feel much more confident in self managing my rheumatoid arthritis.