Category Archives: Chronic Phase

The Chronic Phase

I believe that the chronic phase started around 4 months after I started showing symptoms. Before I go into my updates on how I’m doing now that I’m into the chronic phase, I’d like to poll all of you out there to see how long your joint pain lasted:

Thanks for taking my poll. Here are a couple of updates on how I’m doing now that I’m finally out of the sub-acute phase!

 

January 2015 Update (7 months)

As of now, January 2015 (7 months into the chikungunya virus), I’m still in the chronic phase. Although I will expand further on this part of my blog in the future (after I’ve been in the chronic phase a little longer), I will summarize a few points now that I’ve been in this phase for about 3 months:

 

I believe that the chronic phase started around 4 months after I started showing symptoms. I started showing symptoms in July, and believe that I transitioned into this stage in late October/early November. My joint pain significantly decreased, and the waxing and waning became less pronounced. I still have pain in my ankles and (right) wrist, and sometimes in my neck and SI joint, but it is not debilitating, and does not impact my quality of life or ability to do the things I love. I’m back in my weekly yoga classes (even doing some advanced poses!) and I’m getting back into running despite the snow on the ground. Signed up for my first race (only 3 miles, but nonetheless a race) in late February. The pain is no longer distracting or depressing, and I’m happy to report that I actually have some days that feel completely pain free… on average, I’d say I have 2 days/week of no pain. I’m back to my normal work and exercise routine, although I’m heavily prioritizing sleep, much more so than before I had chikungunya. I’m also noticing my joints cracking a lot, and with each crack comes relief. If my ankle hurts/feels pressure, I’ll flex it as far as I can, and it’ll usually crack, then feel better. I have no idea why this is happening, but I’ll take the relief! Emotionally, I feel like myself again, finally. I would say the depression lifted around the 6 month mark.

 

One general comment I have now that I have hindsight with this virus, is that you have to take your progress month-by-month instead of day-by-day or week-by-week. Trying to track your progress as each day passes, and expecting there to be significant change day to day, will only lead to disappointment. Unfortunately you just have to take it month by month and go with the flow. Additionally, I know I’ve mentioned this 1,000 times already in this blog, but rest is key. Prioritize sleep, slow down, and take some time off work if your employer has short term disability. I suppose it’s possible that the virus would have run its course regardless of whether or not I took off work, but I found that I plateaued before my period of rest, and then about a month into my leave, I started having relief.

 

Now that I’m back at work and fully integrated into my life again, I’ll keep you posted on my progress.

 

Thanks so much for taking the time to read this. Believe it or not, writing this blog in itself has been rather therapeutic. I enjoy being able to share my experience with others, hopefully relate to at least one person out there, and I also found that just writing down my symptoms and what I’m feeling is, for whatever reason, a weight lifted off my shoulders. I would suggest that anyone reading this also share their experiences by way of either starting their own blog, commenting here on mine, or keeping a journal, even if it’s for your eyes only. Writing things down helps, for whatever reason!

 

Just because ChikV is not life-threatening, and just because you can’t see it, doesn’t mean it’s not an immensely difficult illness to get through. It was a long road, we made it to the other side, most likely learned a lot about ourselves, realized our strength, and it’s a pretty great story to tell. As Kelly Clarkson so philosophically put it, “What doesn’t kill you makes you stronger.” 😉

 

All the best,

Chris

 

 

 

April 2015 Update (10 Month Update)

I can’t believe how much better I feel now. I re-read my blog in its entirety (and your comments, too!) and I have come lightyears ahead since 10 months ago, when the acute phase started.

 

I wrote in the blog a couple of times that I was unsure if some of the arthritis was permanent, and that I felt at the time that acceptance was important. I still do feel that acceptance is important, because relief is so incredibly slow and you do have to learn to deal with the chronic pain while maintaining a normal schedule and living life. In the midst of it, you just don’t know when it’s going to end, and staying hopeful is incredibly difficult. And then, quietly, the pain recedes and you are yourself again, pain free. It almost feels like I was under water for so long and came up for air with clearer thinking and a stronger will. So, acceptance is important, but reserve it for the short term only. It gets so much better.

 

Believe it or not, I am 100% better. I have no joint pain. (holy crap, I never thought I’d say that.) Sometimes, in the mornings, I wake up with a stiffness in my fingers that goes away after about 30 minutes of being awake. Never had that sensation before ChikV, but it is not painful. Just a stiffness that I’m oddly OK with. It’s almost like the virus is sending me a gentle reminder the minute I wake up. Almost like, “Good morning! Remember me? And how you chewed me up and spit me out? Here’s a small reminder that you’re not in pain anymore. Now go enjoy your life!”

 

This would not have come out of my mouth 5 months ago, but I am thankful for chikungunya. The virus let me know what chronic pain is. I can empathize with other people who are in chronic pain from a place of real understanding. I also found that the chikungunya made me realize how many people I have in my life that love me, and how amazing my husband and immediate family are. I’ll never forget the support and love that came my way. I will pay this forward. Most importantly, the chikungunya showed me my true strength. I overcame this, emerging with greater strength than I had prior, both physically and mentally.

 

I’ll even go as far as to say that chikungunya was the best thing that ever happened to me. (I know, you all think I’m absolutely nuts.) Here’s why:

 

1) I have made some major life changes since chikungunya. I was contemplating a career change prior to the illness, but not as drastic as the one I am now taking. I was contemplating going to business school “just because.” I didn’t really know what I wanted out of it, I just knew that I wasn’t passionate about my job, and hey, my work would pay for it, and it would probably land me into a different job, so why not? It’s how engineers get out of engineering, right? However, since the chikungunya already forced me to do some soul searching, I sat down and really thought about what I want in life. Not what my boss wants, not what my company wants, not what my friends want, or what my family wants, but what I want. I thought, “If I get through this stupid virus and have 30 more years in my career, what do I want to do? What am I passionate about, and what will fulfill me?” I sat down with friends and family, and of course, by myself, and ultimately decided to do it. I am going to go back to school for clinical psychology, a career I’ve dreamed about in a sort of “pie in the sky” “never gonna happen” kind of way. There are many reasons why I have chosen this career, and why it’s been a dream for so long, but I could write about that for ages, so I’ll spare you. It’s something I’ve contemplated for a few years now, and I finally pulled the trigger. I applied to graduate school (during the sub-acute phase of this illness, actually!), miraculously got accepted, and I’ll be starting school in September. I couldn’t be happier. (that’s what life is about, right?)

 

Would I have done this drastic career change if chikungunya never happened to me? I don’t know, possibly. I was not fulfilled in my engineering career and clinical psychology had been in the back of my mind since before the virus struck. However, chikungunya forced me to take a good hard look at my life. From there, the change emerged, and I’m excited for my new adventure. The psychiatrist in ID that I saw (the one with the depression theory) said that perhaps I would have hit this “mid life crisis” at one point or another, but that  the ChikV made me experience it a little earlier than I would have otherwise. It forced me into a different perspective and asked me the tough questions. This whole chikungunya-induced-“crisis”  was so productive, and will change my life forever for the better. Thanks, ChikV.

 

2) Physically I’ve also made some changes. I’m still working out a lot, but I’m doing a lot more cardio right now than weights. Contemplating signing up for a duathalon (or maybe a sprint triathlon… if I can get my hands on a wet suit…).  Also, I am seeing a nutritionist because I have had some stomach issues since I was a kid that have gone unresolved. I get stomach aches a few times a week that I’ve always just dealt with. Now, I am seeing her, improving my diet, and feeling amazing in the process. I’m currently doing this yeast-free diet and I am experiencing ZERO stomach aches. I used to eat so much processed food and crap. I may have been really in shape fitness-wise, but my diet finally got the overhaul it deserved. I think this “crisis” made me realize that I want to live as long as possible, as well as possible, pain free.

 

3) My outlook in life is just plain different. I sprained my ankle about a month ago walking the dog. I walked right into a ditch. (Idiot, right?) Right after it happened, I hobbled home and did the whole “RICE” thing, but I actually thought to myself while my foot was elevated on the couch, “I’d rather have this sprained (or possibly broken — I didn’t know at that point) ankle than go through chikungunya again. It’s only one joint, and I’ve been in way more pain than this. The pain will get better, I’ll be OK.” Before chikungunya, I can guarantee you that my thought would have been, “I only have two ankles and one of them might be broken?? I’m screwed!”

 

What a dose of perspective chikungunya is. Somehow I went from being a “quietly roll with the punches” type of person (before ChikV), to being an incredibly pessimistic person who got beaten down easily (during ChikV), to an obnoxiously optimistic person who doesn’t roll with the punches but instead punches back! (after ChikV.)  Who’d a thunk??

 

I really hope, for those of you out there who also suffered from this horribly (but temporarily!) disabling virus, that you also found your own silver lining with it. If nothing else, I hope it made you realize your strength. Things happen for a reason, and I know why this hit me when it did. Never thought I’d associate gratitude with chikungunya, but that’s how I am walking away from this thing. I chewed it up, spit it out, took the time to reflect and be thankful, and now I am on to my next great adventure.

 

Thank you for reading my blog and please share your stories.

 

To health and happiness,

Chris

 

 

July 2015 Update (1 year update)

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

 

May 2016 (22 month update)

I no longer have ChikV. Holy crap. After re-reading my own blog, I realize this is quite the statement.

I’m not sure when it officially “went away,” but if I had to guess I’d say somewhere between the 16 and 18 month mark. Somewhere in there I completely stopped thinking about it and stopped experiencing pain.

I am so thankful that it is now a story I can tell about something that’s behind me. I feel like a different person today, and I have chikungunya to thank for it. It was a dose of perspective, it allowed me to re-evaluate my priorities at a certain point, and I chose to take back the reins of my life and change course, not only in what I was doing with my career, but also in they way I see and think about the world.

I left my job and have finished my first year as a counseling student. This is one of the best decisions I have ever made, and I can say I experience joy in my new career, something I rarely experienced in my last one. I’m doing a degree in counseling with a concentration in Behavioral Health, and although I want to work with general populations, chronic pain is a clinical interest of mine. Mindfulness is one of my favorite interventions to use with patients in my internship.

I am closer with my friends and family and have realized how important personal relationships are. Life experience is so much better shared.

I am training for my first triathlon which takes place on June 26, 2016. I cannot believe, when I look back at how much pain I was in for so long, that this is possible and within reach for me. I also exercise now because I enjoy it. I like to explore new territory on my bike rides and my runs, and I like to keep my mind and body happy. I used to work out to keep my body fat percentage down, and although this is a perk, it is not the end goal anymore.

Very occasionally, maybe one day per month, I get stiff elbows, knees, and finger joints. I like to think it happens when it’s humid or raining, or when I play high-impact sports like volleyball. It’s so mild and has no impact other than bringing my joints to my awareness. Chikungunya has left a permanent mark on me, but it is a kind and gentle reminder of what I have overcome. I still stand by the statement that, although it was horrible, it was one of the the best things that ever happened to me. I learned so many important lessons and am so much more present in my own life now. The world is a more beautiful place because I choose to think of it that way. I hike now, something I rarely did before, and I know the names of so many plants and flowers. I never really noticed wildlife before. I am also enjoying having my health back from a grateful perspective, instead of expecting good health every morning. Each day is an exciting new adventure.

My case wound up being documented in the New England Journal of Medicine. I want to give an enormous thank you to the entire team of professionals I came in contact with throughout my ChikV journey, from the phlebotomists doing blood work to the infectious disease doctors to the psychologist, the psychiatrist, the nutritionist and everyone in between. My life is more enriched because of this experience, and this team of professionals made me feel as though I was being cared for despite there being no real remedy for chikungunya other than time, patience, and positivity. I really hope my case somehow contributed to the bank of ChikV knowledge. Thanks to the amazingly smart doctors who were able to put my illness into a context and who so eloquently describe their differential diagnosis, the virus’ pathology, and the clinical presentation of ChikV.

I was fortunate enough to have been invited to speak at a small conference about my case to humanize the case after it had been presented to the community by medical staff. It was a super short talk I gave, but thanks enormously to that team for the opportunity, and thanks enormously to the readers out there or listeners in the audience who have read or listened to my blabbering, as well as those who have contributed your stories in the comments. I know that you are contributing to the knowledge bank, as well. I have loved reading each and every story.

Below is a PDF link to the published case file written up in NEJM entitled “Case 13-2015: A 27-Year-Old Woman with Arthralgias and a Rash.”

Case 13-2015: A 27-Year-Old Woman with Arthralgias and a Rash

Sending healing thoughts and prayers to anyone experiencing ChikV or who is a ChikV caregiver. There is a very bright and wonderful light at the end of the tunnel, I promise.

Chris “2.0”