Unfortunately I have some bad news. My joint pain seemed to have gone away as I described in my last post at 10 months. However, just before the 1 year anniversary of the virus, it has returned, but it is certainly duller and not disabling. What a nice anniversary gift!
About 3 weeks ago I noticed some joint pain in my ankles, elbows, and fingers. Not completely symmetrical. Right ankle and left elbow were bothering me the most out of all the joints. I had just started playing in a volleyball summer league, so I thought maybe it had something to do with that, perhaps the fact that volleyball has much more explosive and lateral movement than any other exercise I’ve been doing recently. It couldn’t possibly be the ChikV. However, as the three weeks progressed, I found that the pain was cycling in a similar manner to how it was during the sub-acute and chronic phases… coming in waves lasting a few days then subsiding. No rhyme or reason, just like before. The pain is worst in the morning (as it was prior), and the joints are cracking away again like popcorn in the microwave. The tendons surrounding the joints in my elbows and ankles are a little sensitive and sore as well, just like before, but MUCH milder. Note that, on the bright side, many joints that used to hurt still have zero pain: wrists, back, hips, neck, shoulders, and toes. No pain, yes!! These are some areas that were definitely hurting early on. Hoping the pain is gone from these joints for good 🙂
I think I was in denial for a couple of weeks about the joint pain coming back, but I’ve finally come to accept that the ChikV is unfortunately not completely out of my system. I will say that I can still do everything I love or need to do — I am 100% not disabled. One thing that really used to bother my ankles was putting shoes on… for example, if I’m in a rush, sometimes I’ll just jam my foot inside a tied up sneaker. This requires me to shove my ankle left and right. During the acute and sub-acute phases — forget it, that shoe was getting untied properly, and my foot was delicately placed into the shoe because the pain was so bad. Now, even though the ankle pain has sort of returned, I can still jam my foot into the shoe without much pain… maybe a slight twinge, but not the screaming/crying pain I used to experience with this movement. The lazy girl in me calls this a serious win. I can also wear high heels, which, during the acute and sub-acute phases hurt so much that I refused to wear them. However, now, there is some pain, but again, it’s mild. I still wear them (beauty over comfort, right?)
I need to stress that the pain is present, and I notice it, but it’s NOTHING like what it was. Things that used to REALLY hurt excruciatingly that are now still pain-free include: opening jars, putting my seatbelt on, kneeling (although if I move my foot in the wrong direction I still get twinges), yoga, running, putting on my shoulder bag, push ups… This is just a short list — but these things are still pretty much pain free.
Anyway, for the sake of being honest with myself and with all you readers out there, I needed to declare my arthritic relapse. I’m still managing to live my life and stay positive. The virus may be creeping back into my life, but I refuse to let it infiltrate my thoughts and turn me into a grouch again. Plus, the pain isn’t bad enough to warrant me being sad or complain-y or self-pitying.
Reflecting now on all of the painful days, as well as the pain-free days I’ve experienced over the past year, I guess I’ve learned a thing or two about how I need to think in times of real pain… I have tried to reflect on what allowed me to go so far down the rabbit hole of misery and pain, and if it would have been possible to prevent it in hindsight. I honestly don’t know if it’s possible to prevent generally being down or distracted in times of extreme physical pain. But, now that I’ve been through it once, here’s my best guess on how, next time, I can maybe prevent myself from getting as miserable as I was:
When the pain was REALLY bad, I gave myself a free pass to be a completely miserable person. I was really awful to myself, as well as other people. I let myself wallow in self-pity and feel helpless and, worst of all, hopeless. I let that self-pity and hopelessness permeate to all areas of my life. I snapped at those around me, and I was not treating myself with any respect, either, having thoughts like “I’m never going to get better,” “I hate my life,” and, “this sucks.” I had no respect for anything going on around me because I was so incredibly focused on my pain, how much my situation sucked, and my lack of progress with the virus. I read a few really good books this past year, one of them being Thich Nhat Hanh’s “Peace is Every Step.” There are a lot of wonderful messages in this book, and I think everyone can take away a different bottom line. For me, the bottom line was that happiness is a choice, and that this choice starts with the practice of mindfulness. For me, mindfulness is observing my breaths in and out, observing the beauty in nature — being mindful of the crisp smell of spring, or the beautiful colors of the flowers, actively choosing to notice the way the snow falls peacefully on the ground in the winter. I’d force myself to choose to think about what was right in front of me instead of letting my thoughts wander to their default place — what is not right in front of me, like my pain, my hopelessness, my “situation,” or my feelings of jealousy of other peoples’ health and mobility. One day this past winter when I was actively trying to build this “practice” of mindfulness, I actually tried to listen to the snow falling. You know what? It actually does make a noise, but you have to physically be outside, and be very quiet and still to hear it. It helped when I closed my eyes. It only took me 5 minutes, but my attention was completely and utterly focused on the sound of the snow. There was no pain, there was no “situation,” there wasn’t even really a “me” or a “you.” Just the sound of the snow.
When I was in pain it was so easy for me to wallow in self-pity and focus on the pain and forget what was right in front of me. When the pain was excruciatingly bad and I was on the verge of tears, the last thing on my mind was how peaceful the snow looked (or sounded). Instead, as I wrote in my blog, my coping mechanisms were watching reality TV (really horrible reality TV, might I add) and drinking wine. This was not the right way to cope with pain. Instead of forcing myself to be mindful and present, I turned to the TV for sort of an escape and a distraction to think about other peoples’ problems. It was like I tried canceling out my problems with other peoples’ problems, just adding more negativity. I also found that a few glasses of wine could also dull the pain and provide a distraction. As soon as the wine wore off or the TV was switched off, the pain and frustration came back and I need more TV or wine to cope…
I learned that, instead, mindfulness quieted the frustration and the hopelessness and the pain. It actually stripped back the negativity. I know that in times of pain I need to appreciate the beauty in life, notice the small things, practice gratitude, pay attention to what is right in front of me, and center myself again… build respect for not just the life around me but also my own. This all may sound like complete psycho-babble, but to me, I think it’s the most important lesson I’ve ever learned.
I actually read Peace is Every Step on the beach in Turks and Caicos (where I got ChikV). Ah, the irony. I was reading the answers to the hardest test I would ever take in my life… then I never actually applied what I read until much later when the test was almost over. Wouldn’t it be funny if the mosquito bit me as I was reading? Maybe the mosquito was saying to me — let’s see how much we can reinforce the message in this book! Here’s a year’s worth of pain!
Even though some of the pain has still come back, I’ll echo my last post in that I am still grateful for ChikV. I learned my life’s most valuable lesson (so far) and I’m becoming a more grounded and aware version of myself. “Chris 2.0”
I guess this blog isn’t over, so I’ll keep you posted. In the meantime, please share your stories. Thanks for reading mine.
“Peace is present right here and now, in ourselves and in everything we do and see. Every breath we take, every step we take, can be filled with peace, joy, and serenity. The question is whether or not we are in touch with it. We need only to be awake, alive in the present moment.”
― Thích Nhất Hạnh, Peace Is Every Step: The Path of Mindfulness in Everyday Life