Writing about living with osteoarthritis has allowed me to meet great people, share my experiences with others, and better understand how people are dealing with similar issues. Recently, because of my affiliation with CreakyJoints as an osteoarthritis (OA) blogger, I was provided a new opportunity – to share my story on a panel at a medical conference.
The moderator-led panel discussion was one-hour, and we described and answered questions about how osteoarthritis has affected each of our lives to an audience of pharmacists, clinical researchers, and doctors, all coming together for three days to discuss advances in OA treatments.
As someone suffering from the condition, it felt exciting to be part of the event, even if it was only for a few hours!
Here are my take-aways:
Of the 3 individuals on the panel, we differed in age, sex (2 males and 1 female), and joints affected by osteoarthritis; ankle, hip, shoulder, neck and back. Each of us had our own story about how we were diagnosed, how we continually manage our condition, and how we live with our daily aches and pains.
While our stories from when we were first diagnosed to how we managed the condition were unique, there were consistent themes present in all our experiences:
- Finding ways to cope
- Developing a sense of determination and not letting our condition get the best of us
- Fear/anxiety/nervousness about how our joints will be affected by our OA in the future
- Excitement for potential treatments
As a panel, we collectively wanted to let the audience know that treating OA involves more than treating just the affected joint(s). There are social, emotional, and other physical issues at play at need to be addressed. To have a better chance at properly managing OA, we told the audience that other professionals should be included in the treatment of OA, including: nutritionists, physical therapists, and psychologists. Without a strong support system, managing OA becomes more of an uphill battle for anyone, regardless of how many joints are affected or how long it’s been since diagnosis.
Enthusiasm for the Future
The audience asked great questions about how we each coped, our hopes and fears, and how we learned to manage the condition. There was a genuine interest in all of our experiences and how we hoped medicine would be able to better help now or in the future.
While there might not be a cure for osteoarthritis in the immediate future, there are a lot of promising treatments on the horizon. There was an understanding that better options need to be made available and we saw that there is a lot of work is being done to find treatment options.
It was a wonderful experience to be in a room of people focused on trying to find a solution to a problem that affects millions of people, from those in their 20s, all the way up!
Personally speaking, while there is little that can be done for my ankle osteoarthritis, I came out of my short time at the conference excited for what’s in store over the next few years with regard to OA treatments and how others might be helped. There’s still a long way to go, but the work is getting done and some very smart people are determined to find ways to help those suffering from OA on a daily basis get back a life that works for them!
This post originally appeared on Creaky Joints
Creating a sense of realistic hope has been a powerful tool to help me better cope with early-onset osteoarthritis.
Realistic hope is seeing the future for what it is and creating expectations, goals, dreams around that future. For me, this means knowing an ankle fusion is a very real possibility in the next few years and in order to maintain an active lifestyle, I’ll need to find new activities and hobbies. At 39, I’m too young for an ankle replacement and the osteoarthritis is so advanced that other potential treatments are not viable options. It’s neither good or bad (OK…it’s really not that good), but it is the reality of my situation.
Only after I was able to develop a strong sense of a realistic hope was I then better able to manage osteoarthritis. Here are three ways realistic hope can help with learning to better manage early-onset osteoarthritis:
1. Managing Physical Expectations
Knowing one’s body and its limits will help to set realistic expectations about what type of activities can and can’t be done due to osteoarthritis. Feeling too confident or thinking a certain activity can’t be done anymore will only hinder one’s ability to manage their osteoarthritis. With my severe ankle osteoarthritis, backpacking trips are a thing of the past. Because I’ve come to accept I can no longer do certain activities, I have the freedom to find new and more osteoarthritis-friendly ones to try out.
2. Realizing Everyone Is Different
Osteoarthritis affects people in many different ways. There are those who are able to play tennis, go for hikes, run or work in the garden. But just because some people can do something doesn’t necessarily mean everyone with OA can.
After all these years, I still find myself saying, “I wish I could do that!” when I see people with osteoarthritis going on backpacking trips or playing basketball, but the condition of my ankle doesn’t allow me to do those activities as much as I would like, or at all. Regardless of one’s age or condition of their OA, everyone has their own activity level limits. Only when I stopped comparing myself to other people with OA was I able to manage my OA in the best way possible for me.
3. Creating Emotional and Physical Well-Being
Being realistic about how osteoarthritis will affect one’s lifestyle will help keep emotions and physical well-being in check. It’s easy to lose focus managing OA after being diagnosed at a younger age, and facing decades of stiff and sore joints can feel overwhelming. However, realistic hope can help to create a sense of emotional and physical well-being because you’re being true to yourself. Only after you’ve been able to be true to yourself will you then be able to work towards a stable emotional and physical well-being.
I was diagnosed with ankle osteoarthritis in my late 20s. Being diagnosed at an early age was difficult for me to accept and I went through a rollercoaster of emotions that first year. Only when I was able to be realistic about my future could I then begin to work on the emotional and physical pieces I needed to properly manage OA at a young age. By no means have I mastered living with OA, but I’m now much better equipped to deal with the rough days and fully enjoy the days when things are feeling…not too bad!
Creating a sense of realistic hope hasn’t been easy for me. It’s taken a lot of patience, acceptance and time. But it has been worth it. Being real about how osteoarthritis currently affects my life and how it will impact the years ahead have allowed me to prepare for the worse while hoping for the best. It’s also been able to open more doors, allowing me to meet people dealing with similar issues and find new and exciting activities to learn, all while not allowing my OA to get the best of me!
Originally posted at The Mighty
I must have been crazy to even think about it. I have early onset chronic ankle osteoarthritis and use an Arizona brace for walking support, and yet there I was, planning a 10-day, 75-mile backpacking trek on the High Sierra Trail through the Sierra Mountains in eastern California by myself.
I’ve been backpacking for less than five years and this was going to be my first — and my last — long ambitious hike. Thanks to my OA, I’m a few years or less away from an ankle fusion. And I’m only 39.
The thought of doing a trek through the Sierra Mountains had been in the back of my mind since 2015, so the fact that it was actually going to become a reality made me pay particular attention to the process of making it successful.
With careful planning, realistic goals, and a little stubbornness, I was confident I could see this hike through. It wasn’t easy, but along the
The Process of Preparing for a Successful Hike
Even with the excitement building each day, I couldn’t afford to skip out on any of the planning details. Preparing for a 75-mile hike is a lot of work for a healthy individual, but when you add in the extra layer of having to care for an arthritic ankle, the planning is taken to a whole new level. My process had to be methodical, and I needed to anticipate each day as best I could.
If I’d approached the trip in terms of mileage alone, and my only concern was to reach a specific number of miles each day, I would have been setting myself up for failure — and probably a painful one. So I decided to focus on small, easily achievable accomplishments that were part of a much larger goal, and I broke my prep work into two areas: physical and mental.
The Physical Preparation
While I’ve always been fairly active, it was important to get in better shape in order to hike 75 miles. I would be carrying a backpack that weighed 40-plus pounds, hiking up to eight miles each day up, down and around mountains. Yet I couldn’t put too much stress on my ankle during training and wear it out before I even started. So my physical training mainly consisted of light jogging on an elliptical machine to increase my cardiovascular endurance. My ankle also needed to be physically prepared for the rigors of the trail. Either at home or the gym, just about every day of the week, and many times twice a day, I went through a physical therapy program designed to get my ankle ready for the hike. This program helped with the stability, strength
I intended to wear my Arizona brace, which I knew would help a lot, but any added strength and stability would only increase my chances of completing each day’s mileage goal as well as the entire hike.
The final piece of getting physically ready was to get a cortisone shot. Without this, there was no way I would be able to finish the trip. During the doctor’s appointment, I had a good conversation with my surgeon about the practicality of the hike and what the short- and long-term ramifications might be for the health of my ankle. We were on the same page about what could happen, but we also felt that because this was my last big hike, it was worth doing. He gave me the strongest cortisone injection available.
The Mental Preparation
The mental preparation might have been the most difficult part for me. Months before my hike, I had to begin the process of accepting that this would be my last great backpacking trip.
My mental preparation included talking with others who had also done the hike and repeatedly reviewing the trip plans. Gathering as many details as I could and getting physically ready helped me feel more comfortable about my preparation and gave me additional confidence that I could succeed.
I also had to be mentally prepared to fail. Failure meant anything from having to turn back to requiring emergency medical help and helicopter evacuation. Not finishing was a real possibility. I had to accept that going in. But if I did fail, at least I knew I had prepared as best I could.
When taking into account everything I had to prepare for while planning the hike, I was confident that my processes had set me up for success. That, in and of itself, was a big weight lifted off my shoulders.
The preparation ends; learning to accept continues.
While the preparation, planning and physical conditioning all ended when the hike began, the process of accepting that this was going to be my last hike was just getting started. And I was put to the test within the first mile of the hike. I had barely broken a sweat and it felt like all the preparation and planning was all for nothing. I already wanted to give up and go home.
Starting Off on the Wrong Foot
I was less than a mile into the hike and already I wanted to quit. Frustrated, mad and dejected hardly summed up my feelings.
“You’ve been working so hard on making this hike a success,” I thought. “How could you screw it up already? YOU MORON!”
Right off the bat, I took a wrong turn and walked almost a mile in the wrong direction. This really wouldn’t have been a big deal, but the miles I planned on traveling that first day were already high, almost 9.5 miles, so adding almost 2 more miles was a huge deal, mentally and physically. I was very nervous about how well my ankle would hold up after that mistake.
I’m not normally one to get frustrated in those situations, but this one got me. I started thinking about all the excuses I could use about why I had quit on the first day. Most of them revolved around my arthritic ankle because that was an easy target and one that everyone would believe. Everyone except me.
How could I tell my friends and family that I had
This was the first of many obstacles of the hike and to overcome it, I had to get back to basics. I was so focused on how this mistake affected the entire trip that I lost sight of how the trek would be made successful, and that was through smaller, more manageable goals.
Small Goals Lead to Large Steps
I took a deep breath and accepted the fact that my ankle was going to be sore and swollen at the end of the day. I couldn’t control that. Next, I returned to the beginning of the trail so I could restart the hike fresh — from the beginning. I reached the fork in the trail where I took the wrong direction. A trail sign was there, but a leaf covered up the arrow pointing in the direction I was supposed to go. It was that leaf that almost caused me to quit something I had been so diligently planning and felt so passionately about. A LEAF!
From then on, I started focusing on the small goals that would get me to the next milestone. Whether it was walking that last mile of the day, doing my ankle exercises, fixing dinner or packing my gear up in the morning, focusing on the tasks at hand while keeping in mind they are all part of a larger goal really helped my confidence grow and allowed me to believe I could make this hike a success.
A Daily Routine for Success
There were different challenges each day, and while I wasn’t prepared for many of them, I didn’t allow them to ruin my hike. Every day, I followed a routine that provided a foundation for dealing with all the challenges. Here’s what my routine looked like:
- Wake-up: 6:15
- Stretch and pack my gear: 6:30
- Begin hiking: 7:00
- Hike until: 12:30-1:00
- Lunch/Stretch/Rest: 1:00-3:00
- Explore the area/fish: 3:00-5:30
- Dinner/relax: 5:30-8:30
- Bedtime: 8:30
The routine was flexible enough to allow for daily adjustments while letting me focus on making sure I kept my ankle healthy throughout the day and not worry about so many other possible problems.
The routine also gave me the opportunity to clear my mind. Even though it took five days for that to happen, I was eventually able to think about what I’ll do after the hike.
Time to Hang Up the Hiking Boot
I can still picture the exact moment when I realized that this hike would not be my last adventure. It was about 7:30 in the morning and I had been walking for about 45 minutes on the second to last day of the hike. It was an emotional morning not only because I was so close to the end of my hike that I could taste success, but because getting to that point had taken so much mental and physical energy that it was a huge relief to have gotten this far.
If this hike was truly one of the worst ideas to do for someone with ankle OA, then there’s got to be so many better options for me — I just needed to be patient and open to new ideas. I had no idea what would be next, but I did know that with the skills I developed preparing and taking this hike — the mental and physical training, developing a solid routine, and being open to changes — that I would be able to find something that interested me.
For so long, I was unable to picture a life after the hike where I could still be active. My assumption was that once my ankle fusion happened, that was going to be it… there would be no more big adventures.
It was only after eight days of walking over 70 miles through the Sierra Mountains that I was able to realize that after this hike was over, and my osteoarthritis wasn’t going to ruin my hopes of an active lifestyle. While I didn’t know what my future would hold, I was finally open to the possibilities that my osteoarthritis wouldn’t take control of my life.
Looking Back on the Hike
While I was able to enjoy a few days of being mentally clear and feeling like I didn’t have many cares in the world, I was quickly snapped back to reality on the last few miles of the trek. I turned on my phone to take a few pictures when unexpectedly email and text message notifications to begin popping up since I was finally able to get reception. I took a moment to pause and genuinely thought about turning around and hiking back to where I started. Metaphors aside, I needed to push forward and finish.
It’s now been two months since I completed the hike. I have yet to find a new activity I really feel passionate pursuing, but I’m not going to rush anything.
I don’t think I’ve fully processed everything yet either. From the great people I met to the scenery to the pain and soreness, there were a lot of emotions packed into those eight days. I’ve looked through the pictures about a dozen times and I still find something new to remember.
A Lesson that Took Over 70 Miles to Learn
It was inspirational meeting other hikers. While I was battling my osteoarthritis, other people had their reasons for hiking: the loss of a loved one, a father
The above paragraph didn’t dawn on me until I wrote this article. While it was hard for some friends and family to understand why I wanted to do the hike, once I got on the trail and met people that I could share similar experiences with, even though we were all brought there for different reasons, there was an added sense of motivation and comfort.
It ended up being a wonderful support system. Sure, not everyone was suffering osteoarthritis, but the fellow hikers understood the physical challenges it took just to walk the trail, so hearing the positive reinforcement and seeing smiles added an extra bit of motivation. That’s what makes up a dependable support system as well. Dealing with OA, or any other chronic pain, in the real
What I’m looking for in new activities
Now that I’ve gotten the hike out of my system, it’s time to get down to finding a new activity. Since the train
Thankfully I’m in no hurry to find something new so I can take my time and find a good fit. To help me begin this journey, I’ve made a shortlist of criteria I’ll use to help find a new activity:
- Low impact, yet still physical: I still want to keep moving regardless of what happens to my ankle. I know my options are limited, but there are a few good options I might be able to pursue if the activities interest me enough.
- Mentally challenging: I really enjoy learning new skills and now is a great opportunity to challenge myself physically and mentally.
- Individual or Group: There’s a social component to backpacking that I enjoy. Even though I took the hike on my own, it was great to meet up with people and talk about how their hike was going. In my next activity, having a similar social component would be great.
- Outside: I just can’t be stuck inside all day. Having to sit inside on the days with my osteoarthritis is acting up is more than enough, so I would like to make up for that by getting outside as much as possible.
- Longevity: I want to be able to do whatever it is I choose next for a long time and be able to do it no matter how bad my ankle gets.
What’s down the trail, looking ahead
Preparing for and taking the hike provided me with the opportunity to learn a lot about how to live with chronic osteoarthritis, but there are still a lot of unanswered questions. Two months after the hike my ankle feels better than I thought. So much so that I even started researching a new hike for 2017, but then quickly realized how bad of an idea that would be. I still have a hard time coming to grips with the fact that that was last my hike. But this is all part of the process towards acceptance and figuring out what’s next.
After all, learning to live with and properly manage osteoarthritis is a marathon, not a sprint.
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Quick, what activities come to mind when you think of being active with osteoarthritis? Walking. Stationary biking. Swimming. Maybe sitting on your couch.
Yes, those answers are correct.
But what about surfing? That’s right. Hear me out…
Over the years, I’ve tried all sorts of osteoarthritis exercise programs to help with my ankle stability and strength. Of all those programs, it was a workout designed for surfing that has proven to be the most beneficial for me.
For many years, my workout routines were similar to those I did in college: squats, deadlifts, and jumping and agility exercises. As my ankle osteoarthritis grew worse, it became clear that those were not the type of exercises I could continue if I wanted to properly manage my OA.