Yoga poses that I flowed through easily 2 months ago are now painful. I'm finding it increasingly difficult to get up after remaining seated for too long. I hear myself saying, "ouch ouch ouch" at least 5 times a day. I know what this means. I've been through this before. I've tried to blame it on the weather or excessive time on the bike but I know what is happening. My disease is progressing. Again.
I knew this was inevitable. I mean... my disease is progressive in nature. Two years ago I met with my surgeon to discuss my future. I had just overcome the most challenging recovery from knee surgery numbers 9 to 11 and was wondering how long I had until the other knee would require the same surgery. Dr. Carey carefully examined the multiple MRI's of my right knee and attempted to make a prediction about an expiration date. I knew that once the lesion became too large, I would no longer be a candidate for a transplant...so I needed a date. Dr. Carey estimated Spring 2021. At the time, that seemed like eons away and up until about 2 months ago, I had no indication that my right knee was deteriorating at all. It felt stable and pain was very minimal. But, as to be expected, my pain is increasing, and I feel my mood, confidence, and self-esteem wavering as well.
The narrative in my head has flipped from "I am strong. I am healthy. I am well" to "I am broken. I am sick. I am useless." I went from feeling proud of my body to feeling disappointed and frustrated with my body for failing again. My narrative establishes my mindset. As my pain increases, I can feel my mindset shifting. I have experienced this before so I know that I need to put an end to this quickly. I have found myself in dark, lonely places where I question why Evan would love someone who is defective. I have questioned why my friends would want to hang out with someone who requires so much assistance. I have felt guilt for being such a burden to my family. I know that these thoughts are harmful. I know that it's very important for me to change my narrative ASAP so that my mindset doesn't shift into "whoa is me" territory.
Like many people with chronic diseases, I have found myself searching for someone to help me. I know fellow chronic illness sufferers who spend hours on the phone, in doctor's offices, and online searching for Doctors and treatments, all in the hopes that they will experience relief. I've been there. Luckily, I did find my guy - Dr. Carey - a cartilage specialist in Philly. However, Dr. Carey offers one solution for me which is a series of very difficult surgeries with a long and painful recovery. He is the last resort solution, and presently, with our borders closed, not even an option at this time. So who is going to help me? No one. I need to help myself. That thought might throw one into a frenzy; however, I choose to look at it as a way to maintain some control over this disease. I might not be able to control the physical aspect of this disease, but I can control my thoughts around it.
I wish that I could present you with a nice little list: 4 Things you can do to shift your mindset. But...I don't have a tried and true list, to be honest. Even after 11 years of dealing with Osteochondritis Dissecans (OCD), I am still in the experimental phase, and continue to make many mistakes along the way. So...I've compiled a short list of the strategies that have not been effective for me and have offered alternative solutions. Perhaps if I write this down I will follow my own advice!
Here it goes...
1) Push a little harder
Ahhh....this is my go-to when I begin to suspect that things are deteriorating. Instead of taking a day off the gym and elevating my knee with heat and ice, I "bravely" limp into the gym and try to "walk it off." I cycle on the bike for an hour or do an extra 30 minutes on the elliptical - like I can spin the cartilage disease right out of me! My buddy, Darren, tried to walk off decompression sickness (AKA "the bends") after a dive. You can't "walk off" the bends. Likewise, you can't "walk off" Osteochondritis Dissecans.
Narrative: "Look at all the things you can no longer do. You are getting worse."
Alternative Solution:
Although pushing yourself harder when you feel like crap is not an effective treatment, I would highly recommend continuing to move. Laying dormant for too long can increase pain as well as invite negative thoughts into your head. Let endorphins be your friend and find a way to sweat without aggravating your affected area. For example, even when my knees are painful I can lay on a mat and do an ab workout or pick up a weight and work on my triceps. The burn in my muscles makes me feel athletic and fit, which promotes my "healthy" mindset.
2) Booze
We've all heard the saying, "You booze, you lose." In most cases I would tend to agree with this statement when it comes to chronic illness. Drinking alcohol might temporarily ease some pain, but nothing is worse than dealing with a hangover on top of the pain you are already experiencing.
Narrative: "You are so stupid. Why would you inflict this upon yourself?"
Alternative Solution:
I do highly recommend getting out and socializing with friends when you are suffering with pain. The other day I was lying listless on the couch as I was experiencing significant pain. As I flicked aimlessly through the channels, I could hear my inner voice saying, "Look at you. You are a loser who lays on the couch all day." Harsh, hey? But then my buddy, Stacey, dropped by and suggested we go out for some ice cream. To be honest, I didn't want to go but I knew that I needed a change of scenery. We ended up at our favorite local beach bar and I added a couple of drinks with my ice cream (Macabuca punch pairs nicely with cookies and cream). I found myself laughing with the bartender, reminiscing with Stace, and feeling like a fun friend! Don't get me wrong, the sensation of a screwdriver twisting into my knee was still present, but I was able to distract myself and get out of my own head for a few hours.
3) Getting wrapped up in your disease
Yikes. I have found myself avoiding social events and spending way too much time on the online OCD support group lamenting about how awful this disease is and how hopeless I feel. Misery loves company. After a few hours of falling down the OCD rabbit hole, although I know that I am not alone, I typically feel pretty shitty and demoralized.
Narrative: "Well...we are all stuck in this hopeless rut together."
Alternative Solution:
I do think that talking about your disease with others is helpful. Instead of attempting to conceal the pain and pretending that everything is fine, I try to warn my friends before meeting up with them, "Just FYI it's a bad knee day" or I let Ev know, "I'm sorry I'm in a bad mood. My knees are really bugging me." I think that it is important to not feel shameful about your pain, and although no one wants to hear you drone on and on about it, communicating to your close peeps is vital so that they can understand why you may be a little more quiet than usual or why you are grimacing when you move. In addition, I've found that informing my buds that I am nervous about an activity helps take the burden off a bit. For example, one of my most dreaded activities is getting up at a table and walking out of a restaurant. I am fearful of falling or drawing attention to myself. In this situation, I quietly let Ev know that my knees aren't great, and he helps me up and holds my hand as we walk out. In addition, instead of sitting on the OCD support group page and lamenting with others, I try to offer solutions for members who are having issues. I have suggested different medications, sleeping positions, and gentle exercises to alleviate pain. Although I'm not always feeling so solution-based, I find that the "fake it until I make it" strategy can alter my narrative to, "I can help people by sharing my experience."
4) The Medication roller coaster
I've been on both ends of the spectrum with regards to prescription painkillers. I have been dependent on a medley of various medications and suffered through horrible side effects and excruciating withdrawal symptoms. I have also eliminated prescription meds from my life and suffered through pain while relying only on "natural" painkilling methods. Neither plan was successful for me.
Narrative: "Just suffer through it. If you take a painkiller then you are a failure again."
Alternative Solution:
I am presently in this predicament. I have felt so proud to be free of prescription painkillers for the past few years that I find myself boasting this fact to others - like it is some type of feat for which I deserve a medal. The fact is, the pain that I am experiencing sans painkillers is now affecting my ability to function. The pain has begun to affect my ability to think clearly and to enjoy interactions with others. I know that I need to stop associating prescription painkillers with failure and seek help. It's time to meet with my Pain Specialist and create a new safe medication plan that will keep my medication risks to a minimum, yet help me to enjoy more "good" days.
So...maybe this post resonates with you and hopefully you can learn from my mistakes. I think that the first step in shifting your mindset is listening to what your inner voice is telling you. If you are saying things to yourself that you wouldn't say to your worst enemy, you need to re-evaluate these thoughts and find strategies/activities to alter your thinking. Easier said than done...I know. I am still figuring it out.
Cheers Friends.
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