Wednesday, January 17, 2018

Trying Days

           It has been a tough and trying couple of days. I figured they would go down into the list of hard times that I do not write about, that cling to me invisibly, that I choose not to share. But there is something about snow that makes me feel brave, and I have spent time today reading blogs written by impressive people with chronic illnesses, and even though I am feeling nothing short of awful today I know that there are people living with juvenile arthritis just like me all over the world, and we all deserve the knowledge that there is someone out there experiencing the same pain.

           On Saturday night I slept for only 45 minutes; I was so overcome by pain that when laid down in my pitch-black room all I could feel was the throbbing of my joints, and when I closed my eyes I felt my eyelids twitching with shocks of pain. When I woke up from those 45 minutes I found myself uncertain of whether I slept lightly or was just barely awake. I hate that feeling. "It's just arthritis," I told myself, but I did not want to be complicit in my own destruction so I held off on pushing myself any further down this hole of dismissiveness. Falling asleep is difficult when your ribs feel like sharp intruders in your body and your joints feel tender and warm to the touch and everything aches and aches and aches. It sounds simple but feels overwhelming.

          My joint pain has been through the roof over the past few days, in a wince-when-I-push-down-on-the-gas-pedal and reluctant-to-speak-out-of-fear-of-sobbing and worried-that-when-I-stand-up-my-legs-will-crumble sort of way. It is by no means the worst it has been, but it is bad enough to be having a significant impact on my life. According to my rheumatologist, I am also having tendon involvement, and I think some of the pain, especially around my ankles, is tendon-related, but that is a bold claim for a girl who honestly cannot even define "tendon."

UNC in the snow!

          Thankfully, the grace I have been shown by so many dear friends has also been outstandingly high. I am lucky to know such genuinely good people. On Sunday night, my friend and I went out to dinner (I had only eaten a granola bar up until then, which was not helping my energy levels) and she encouraged me to go straight to bed afterwards. We shared pita, laughter, and advice, and for the first time on that threatening day I identified as a teenager rather than a patient. I spent several minutes trying to pinpoint how I was feeling, and then I happily realized that I just felt eighteen. Sunday night offered me ten hours of solid sleep, and while I still woke up on Monday morning feeling miserably tired, I was grateful for the rest. Saturday and Sunday existed as one dreadfully long block of time to me, and I have a new appreciation for the benefits of dividing our earthly existence into day-long segments, with time to recover and reset in between. According to my high school psychology class, scientists have not determined why humans require sleep. I am all for delving into the biochemistry behind this phenomenon, but I also think that perhaps this regular reduction of consciousness is just a pinch of mercy from above.

           My left hip has been in quite a bit of pain for a few days now. The only way I know how to describe it - and this is a strange way to speak about one's body, I know - is that the center (figuratively speaking) of your body is generally your head, where you think and speak and listen and look. All of your other body parts orbit around this central control center. But over the past few days, the center of my body has been my left hip. The rest of my body functions in response to the pain present there, and I am constantly in a battle between wanting my mind to take control and accepting that at the moment this hip holds a whole lot of power over me.

           Last night, I was losing my mind with pain, and just really not feeling like myself whatsoever. I crawled into bed feeling small and bruised and exhausted and disconnected from my body. And then, out of absolutely nowhere, I received a text from a sweet friend who I have not spoken with much lately, which read (in part), "Text me if you are going outside! I'll walk with you. I know it must hurt." My dad had told me earlier in the evening that I needed to be careful if I was out and about today given all of the snow, and all I could think of was how unstable my left hip felt. This fear lingered over me all night, and I tried to think about all of the ways that I could prevent falling, and then this angel dropped down from heaven with a very generous and sincere offer.

           I thought of a high school friend who once saw me limping and informed me, "We're going to walk to your next class together." When I protested, clinging to my perceived independence, she looked me in the eye and gently placed her hand on my elbow and said, "Rach, there is no reason to walk alone." Perhaps she intended for that statement to apply solely to our shared journey to my math class, but I felt it much more deeply, and even though I was reluctant to let her walk beside me, I did feel safer and much less alone.

           The culmination of these recent joint issues is that I am torn up in all sorts of ways about my plans for the weekend and whether or not they should involve a wheelchair, which is honestly ridiculous because what I should be worried about is how I plan to get all of my homework done. Between musculoskeletal pain and a severely screwed up sleep schedule, I do not trust that my mind is as clear as I would like it to be. I have been having semi-frequent near-falls, where pain in my ankles, knees, and hips causes me to shift positions faster than I can decide how to properly balance myself. To those around me, I appear to stumble over nothing, and so I quickly transform it into a joke about clumsiness rather than admitting that these are legitimately frightening incidents. From a physical standpoint, I think it would be easy to say that the wheelchair would probably be a good call, but from an energy standpoint, I do not feel like coordinating all of the logistics or requesting help, and from an emotional standpoint, this pain already has me feeling on edge and overly concerned about the smallest of things.

           This post feels choppy and disjointed to me. There is nothing tying each paragraph together, no underlying theme woven through my words. It feels selfish and unnecessary and unhelpful. I almost deleted it. But this is what days full of pain feel like, and I know that there is value in sharing that, even if it makes me uncomfortable. Honest narratives about hard days written by people coping with chronic illnesses have been incredibly comforting to me over the past seven years. I am able to pull myself together when I need to, to hold back tears, to genuinely smile and laugh, to distract myself. But I am unable to shift my center away from my hip, and I am unable to construct an essay with any literary elegance, and I am unable to make decisions about my health without becoming upset because I just feel so stuck. Should I take pain medicine or not? Should I use my wheelchair this weekend or not? Should I contact my rheumatologist or not? None of these questions have easy answers, and all of them involve other people. None represent insurmountable challenges, but all of them feel like more than I am capable of taking on at the moment.

           Today the world is snowy and white and gorgeous. Today I have friends who love me and parents who would do anything for me. Today I am feeling well enough to complete my readings for the week. Today I am wondering what the future holds. Today I am questioning whether starting a new biologic was the right decision. Today I am feeling embarrassed by all of the help I have needed over the past few days and all of the help I am likely to need in the next several days. Today I am all of these competing emotions and realities wrapped up together.

           Tonight I will sleep as much as I can. Tomorrow will be a new day.

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