Over the years, both after my chronic Lyme & co-infections diagnoses a year and a half ago as well as the past decade of having "Juvenile Idiopathic Arthritis" and countless other un/misdiagnoses (and honestly, since I was a small child dealing with what we then thought were ever-present ear aches/infections and "growing pains"), I've gotten really good at pushing through the pain.
It's not always easy, and I'm not saying I always do it, nor am I saying it's always possible. What I mean is there was once a day when joint/muscle pain were my only (notable) physical symptoms, and there manh times I let my pain dictate what I did/did not do on any given day. If it was freezing cold but my friends wanted to leave our college dorm to go somewhere (meaning going outside), often declined because I was aching and stiff and knew the cold would make the pain and stiffness worse. Or if someone asked me to go on a walk with them on a day when my joints were giving me enough trouble that I kept a record in my head throughout the entire day of how my pain level would rate on that annoying 1-10 scale, I would politely decline and tell them that my joints were "deciding to be their 80 year-old selves in my teenage/young adult body."
You see, it wasn't that I didn't want to partake in these activities with my family and friends, it was just that, in the earlier days of my illness--before I had all of the severe neurological symptoms, debilitating fatigue, constant nausea, stabbing pains associated with neurological issues (can be far worse than joint pain in my case, I've learned), inability to digest food or absorb nutrients, and as we all know, the list goes on for miles--I was really bad about viewing my pain as the most important factor in making a decision about doing [insert any activity here]. I didn't ALWAYS miss out on fun activities--in fact, my last semester of college in 2011, I went ice skating in a town that was 45-minutes away from campus anywhere from 2-5 times a week--but I did tend to shy away from participating when I was having any amount of joint pain, and sometimes even if I was feeling okay but thought the situation in question would cause joint pain and stiffness. Looking back, it's actually very strange that this was my approach to life, because it doesn't fit my personality at all. I've never been a person to give up easily or let a challenge defeat me, yet for the better part of a decade, that's exactly what I let my joint/muscle pain do.
Fast forward to present-day Becca.
Present-day me can still not recall a day in the past couple of years where my joint/muscle pain has been absent. It is still a constant, unwavering companion. The difference is that it now has countless other friends that share it's space in my rented-out-to-illness body. There are still days when my joint and muscle pain feels overwhelmingly intense, yet those days always bring a flare-up of other symptoms, as well, most notably fatigue and eye/ear/jaw (trigeminal) neurological pain, and I've realized that it's these latter symptoms that are the most un-push-through-able (that's a technical term), and my joint/muscle pain suddenly seems much less worrisome than it did even a couple years ago, despite not changing as far as intensity and level of pain goes, and I've learned to relish the days where joint/muscle pain is my only (or at least my most) notable symptom. I've learned to appreciate those days because I now realize that, on those days where joint pain is my only bad/flaring symptom, much of the time I'm able to push through the pain (to a degree, at least) and enjoy life as much as I'm able.
I want to share a recent example of this from my life:
Yesterday was Saturday, and there were two very important games on TV yesterday: Kentucky basketball took on UNC (and won, of course--C-A-T-S!), followed by the Army-Navy football game (my favorite of the year--GO ARMY, BEAT NAVY!). I had been eagerly awaiting watching these games at my parents' house across town, cheering enthusiastically, and perhaps even attending our Sunday school Christmas party following the Army-Navy game. But something happened to prevent that perfect plan from happening (I really need to learn *not* to plan ahead, because my plans never stay unchanged or feasible, but I can't help it, I'm a lifelong planner...it's in my DNA).
I didn't get a single second of sleep on Friday night.
While this is nothing new (happens usually at least a couple times a week), most often I'm able to catch up on my sleep the following morning and afternoon. Yesterday morning, as I begged my body to sleep for a few hours before the first game started at noon, I could almost hear my body scream "I refuse! Never!" And taking something to knock myself out was simply not an option because then I'd miss the UK game (blasphemy) and probably the Army-Navy game (treason). As trivial as these things may seem, they are super important to me, even more so nowadays that I'm unable to leave my house, and I told myself wasn't going to miss them for any reason.
So somehow, I ended up soldiering through a shower yesterday around 11:45am (thank God for shower chairs) and had Rog help me get to the living room, where I lied on the couch with my wet hair on a towel, and watched the UK game with less than my typical vigor (but still making plenty of comments/reactions/smart-alec remarks about Roy Williams, of course). We then had mom and dad come over to our house to watch the Army-Navy game since I always watch it with my dad (West Point class of 1980), and while they were here I was actually able to sit up and watch the game while also holding conversations with Rog, mom, and dad throughout the duration.
I knew there was no way I could leave the house--on days that follow sleepless nights, there's always a moment of complete crash, and I didn't want this to happen at the Sunday school party. Plus, despite sitting up and watching the game, my body felt fatigued and exhausted (though not the same devoid-of-all-strength feeling I often get). As Rog and I were in the kitchen deciding what we were going to have for dinner, I said something about not sleeping and Rog made the comment "Well, somehow it seems like you've had a good day despite that." My exact response was, "Yeah, I know, but I feel like crap. I can't explain how bad I feel to someone who doesn't feel like this themselves, but trust me, I feel awful." I immediately felt bad for the knee-jerk response because 1.) I always try my best to not discount anything positive with a negative statement so as to not add any unneeded negativity to our lives and 2.) It's not necessary to justify your bad day with the person that lives with you day in and day out--he knows I was probably sill having flare-ups of some kind, because that's how things are right now, but from an outsider's perspective it makes sense to assume that yesterday was a better day than the days where I'm unable to leave bed and/or sit up. It was absolutely just the first thought that came into my head because I really didn't feel well yesterday--although, when I thought about how I said I couldn't explain it to someone else, I realized I couldn't even explain it to myself.
How, despite being awake for 38 hours, was I having a day where I was able to sit in the living room, watch a couple of games, have conversations, laugh, and watch a Christmas movie (Home Alone, of course)? The answer didn't come until I was (finally) falling asleep sometime after midnight, and when it came to me, it was a major "Aha!" moment.
I was able to do those things because, even though it makes no logical sense after a sleepless night, fatigue wasn't my major issue yesterday, nor was neuro pain (until late-evening) or any other symptoms except...drumroll please........
Joint and muscle pain.
And since those were my only major issues for most of yesterday, as I mentioned above, they didn't even take up much space in my conscious mind because I've learned how to push through that pain so I can enjoy life. My body and mind were registering the pain as being there, I was even consciously aware of it due to using essential oils on a few joints, but I didn't see how it was the reason for my "I feel like crap...I can't explain it...but I feel awful" statement. I couldn't explain it because I wasn't actually focusing on the pain, I was pushing through it, so it wasn't in the forefront of my mind at the time I needed to recall it when trying to explain how it had still been a rough day.
I can say this with utmost confidence: I have become pretty daggone good at pushing through that kind of pain, and I wouldn't trade that characteristic for anything (except a cure, obviously).
I was excited to share this revelation with Rog--to apologize for my earlier negagivity and to share with him the formerly-absent explanation--but since it didn't hit me until I was drifting to sleep last night, I wasn't about to start talking and ruin my slumber-mojo. I did tell him all about it today when he came home after playing in the praise band at church, and I'm pretty sure it made sense to him, too.
Today, I've been unable to leave bed, though it's a direct result of fatigue, weakness, and neurological pain, but it was expected because I took my most-recent dose of treatment for EBV before bed last night. Thankfully, God gave me enough energy to at least compose this post before I crash again, which is hugely encouraging the day after a dose--it means we're still on the right track and that this EBV load in my body keeps dwindling, slowly but surely.
I hope everyone is well and is resting up for the Christmas craziness that always seems to happen over the next two weeks.
And one last thing--I wanted to share this picture from yesterday: