Just because osteoarthritis takes something from you, doesn’t mean you have to ignore that activity. My ankle OA has taken away backpacking. It hurts (emotionally, not physically) not being able to backpack anymore. And it’s hard seeing others do what I so badly want to do. But I haven’t stopped paying attention. I can still participate to some degree. I may never get to the top of Mt Whitney (I did!) or make other hiking trips on my Wish List (I won’t):
But I can help those who are able to fulfill their dreams, and a little piece of me is able to make it happen as well.
Is there is someone who is doing what you can only dream of, show your support for that person. Follow them on FB, Instagram, Pinterest or another social media outlet. Buy something they endorse. If it makes you feel part of the adventure, in some small way, then participate!
It’s important to not let osteoarthritis take away everything you enjoy. It can take away your ability to participate in something, but it doesn’t have to take away your love of that activity.
That’s something I’m dealing with now. I can’t go backpacking anymore and seeing others making the trips I had planned on doing hurts. It’s part jealousy, part feeling sorry for myself. I’m not yet at the stage where I can follow or read about all the adventures I see others doing that I once had planned on taking myself. I’m working on it, slowly, but it will come. I just need to find my own way to participate. How do you participate? When you see someone doing an activity you can no longer do, how does that make you feel?
I’m only a stone’s throw away from the operating room to have my right ankle fused because of chronic osteoarthritis. I’m so close, I can see my surgeon’s face as he waits for me inside. He’s wrapped up in his scrubs along with the anesthesiologist and nurses.
Whether the ankle fusion happens next year or three years from now, that’s unknown. The only thing that is known is that it’s going to happen.
Since the when is unknown, I feel a greater sense of urgency to cross off a few items from my bucket list while my ankle is still healthy enough. One of those items is taking my dream hiking trip on the High Sierra Trail, which I’m scheduled to leave for later this week.
After this hike is over, I’ll still take short weekend trips, but those will only require a little walking, nothing like a 70-mile, 10-day hike through the Sierras. This is it. This is the one.
While visiting my doctor to discuss what this hike would mean for the health of my ankle, we both felt that it is not the best idea. We talked about the chances of feeling discomfort during and especially after the hike as well as damaging the ankle even more. While I was able to get a cortisone shot to help with any discomfort during the hike, it’s only temporary. What’ll happen after is more of the unknown.
I’ve been fortunate enough to remain pretty active for a long time. But now my osteoarthritis is dictating what I can and cannot do physically. When trying to manage chronic OA at the age of 38, it’s important that I know my limits and have a sense of realistic hope for my activity levels. I’ve finally come to the acceptance that it’s time to move on from hiking and find another activity to pursue.
When I return from my hike in mid-September, it’ll be time to find a new hobby. But I’ll be confident in my approach to find that hobby because of the way I’ve approached previous barriers created by my osteoarthritis. Below are three ways I’ve been able to approach those barriers:
1. Accept reality: Knowing that it’s time to move on helps make taking that first step that much easier in looking for something else.
2. Be proactive: For years I’ve been working hard to do what I can to remain healthy and be out ahead of my osteoarthritis limitations. I’ll be able to draw on that experience to help find out what’s next.
3. Keep an open mind: I don’t know what the experience will be like as I search for something else. But being open to new experiences will allow me to find the best fit for the next stage in managing my osteoarthritis.
There are a lot of unknowns about what’ll happen once the final hike is over, the health of my ankle being only one of them. But I’m not only looking forward to the taking this amazing trip, but for the adventure that will come after it as well.
January 15, 2014. Sitting on the examination table I scan the room. There is a replica of a skeleton in the corner and pictures of the human body showing the skeletal structure, tendons and muscles, and various joints hang on the walls. The paper between me and the table crinkles every time I move.
On the desk is a model of the ankle, one of those where you can see how all the bones and tendons fit worked together. The model is broken.
I think that’s a sign of things to come.
I walk out of the office in what is my first of 4 ankle braces, and 1 cast, I’ll wear in 2014.
Why 4 ankle braces you ask?
The osteoarthritis in my right ankle decided it wanted to make itself be heard…and felt.
The other week I was in Wisconsin to visit family and friends. On the way back to San Francisco, I had some time to kill before my flight so I decided to walk around the terminal at O’Hare Airport in Chicago to stretch out and do a little people watching. O’Hare is a busy airport so you see all types of people heading in every direction. From businessmen in suits to vacationers in jean shorts and everything in between. If you wait long enough, you’ll see a wide range of travelers.
After about 25 minutes of walking around, I stood off to the side and leaned up against a wall when a lady approached me. I instantly recognized her from my walk through the terminal becuase around her neck was a large, bright red neck pillow.
She approached me with a quizzical look on her face and asked, “What is that in the side pocket of your backpack?”
“This?” I asked as I grabbed my trekking pole from the side pocket? “It’s my backpacking trekking pole. I use it to help keep my balance when I’m fly fishing in streams.”
I had one of these trekking poles in my backpack.
“Oh great!” she said with a relief. “When I saw that I was thinking ‘He’s way too young and athletic looking to need that as a walking aid.’ So I’m happy to hear that’s what it is for and that you don’t need it for support.”
“Yeah, nothing like that. It provides a little extra support when I’m walking over rocks and uneven riverbeds” I chuckled.
Yes, I did lie to her, but it was only a little lie since what I told her was also part truthful. I do use the trekking pole for balance with I’m fly fishing. But when I travel I also bring it along to use for support if my ankle gets too tired.
I lied because I didn’t want to get into talking about my osteoarthritis.
Even though I don’t mind letting people know about my osteoarthritis, there are times when I just don’t want to talk about it. At that time, I was relaxed and enjoying the moment. Having to explain that I need the trekking pole for support because my ankle is an arthritic mess would have brought my mood down. And selfishly, I didn’t want that. And I’m perfectly OK with that decision.
I don’t want to lie about or cover-up my osteoarthritis. In fact, when people ask about my condition I’m usually more than happy to explain what’s going on. I hope that discussion changes the person’s perception that young adults do suffer from osteoarthritis, regardless of how we look. But being able to pick and choose when and how much I talk about my osteoarthritis is a way of dealing with the emotional rollercoaster it creates.
When you’re in a similar situation, how will you react?
Talk with the person openly about your osteoarthritis
Change the subject
Just let the other person know that you’re not up for talking about it right now
Whatever your decision, the important thing is to be honest with yourself. There will always be the perception that young adults don’t suffer from osteoarthritis. But the reality is, and it’s our reality, that there are a lot of us who have to face the daily struggles our osteoarthritis presents. How we deal with our reality, in a way that’s best for us, ultimately is what allows us to successfully manage our osteoarthritis and live the type of life we want to live.
My path towards ankle osteoarthritis (OA) began while I was playing collegiate basketball. Over the course of those few years, I was always spraining my ankle, sometimes very severely, and never taking the time to properly care for it. I was 21 years old and figured I wouldn’t have to worry about any ramifications until I was 50 or 60. But all the damage sustained over that short period of time led to early onset osteoarthritis in my right ankle at age 28. Until that point, I had lived an active life. I enjoyed playing basketball, golfing and just generally being on the move. That all changed rather quickly and 30 years too early.
Frustrated, scared and confused doesn’t even begin to describe how I felt.
During the first few years after my diagnosis, I think I tried just about every “treatment” or “cure” I came across. I was, and still am, pretty stubborn, so I believed I could find a way to beat osteoarthritis. After all those cures failed to deliver on their promises, only then did I come to accept that I needed to learn how to manage osteoarthritis so I could live an active life.
Now 10 years later, at the age of 38, I’m still learning how to properly manage my OA. While I’ve made some mistakes, I’ve learned a lot. I’m still able to live an active life, but I’ve learned how to better manage my expectations.
To help manage my OA, there are six pillars I’ve learned lean on over the years. It’s these six pillars that have allowed me to grow and thrive even with my ankle OA.
1. Develop a support system. Both my family and friends have proven to be reliable support systems. Talking with them and even educating them about my osteoarthritis if needed has helped me better weather the ups and downs I experience.
2. Knowledge is power. Right after I was diagnosed, I wanted to learn as much as I could about my condition. I spent a lot of time reading about the experiences of other OA sufferers. I also read scientific articles and research to gain a firm grasp of the treatments that actually work and the clinical trials testing potential cures. All that content helped me to be better prepared to proactively manage OA, talk with my doctors about how ankle OA will affect me moving forward, and help others suffering from the same condition.
3. Own it. There are days when my osteoarthritis keeps me from doing much of anything. But on a day-in-day-out basis, I want to do what I can to ensure I’m living a life that allows me control my osteoarthritis as best I can. I pay special attention to my diet, exercise and physical therapy, and mental focus so I don’t get caught up in the mental rollercoaster that OA can sometimes create.
4. Better communication. I learned quickly that saying “My ankle hurts” doesn’t do an adequate job getting the message across about how I’m really feeling. Instead, being as specific as possible saves a lot of needless back-and-forth and frustrating communication. Here’s an example of what’s worked well for me: “Because my ankle is swollen and has limited movement, walking or even standing too much today is going to be uncomfortable. I’d prefer to rest and save my energy for another activity.”
5. Coping mechanisms. Dealing with osteoarthritis can make me frustrated, impatient and grumpy. Those feelings get in the way of owning my condition, as I mentioned above. Learning various coping mechanisms, like meditation, provides a pathway to becoming better mentally equipped at managing my osteoarthritis.
6. Life balance. I still like to be active by backpacking and fishing or walking my dog. But now I have more realistic expectations about what I can do and for how long. I’m getting better at balancing my activity-filled days with ones where I sit on the couch all day.
My battle with osteoarthritis is now 10 years old, but I’m still learning how to best manage it while trying to live the type of life I want to live. It’s a delicate balance. Thankfully, I feel those six pillars have been hugely beneficial at allowing me to proactively manage my OA instead of it managing me. I still have a long way to go, but I’m confident I’ll still be able to thrive!