What My Nightly Struggle With Invisible Illness Looked Like
At 3:30 a.m., I sat in bed gasping for air with acute pain in my chest.
Like every other night, I had gone to bed at 10 p.m. after completing my usual routine, which started a few hours before bedtime. My goal was always to get as many minutes of sleep as possible.
I prepped all my pillows for lying on my right side: one pillow for my head, one pillow for between my legs, another very fluffy pillow for hugging (so that my body didn’t have to “twist” too much as my left arm was pulled down by gravity), and one pillow for my back (again, in an attempt to keep me from “slouching” as I slept on my side, which I didn’t even know was possible earlier in life).
I put on my wrist support brace for my sore and weak wrists. I wore my night guards because my temporomandibular joint disorder often flared as I clenched and ground my teeth when the pain arrived. I used a TENS machine for 30 minutes and stretched for another 30 minutes.
I took a hot shower in an effort to calm my muscles. I rubbed A535 cream on my hips for pain relief. For good measure, I swallowed a few naproxen and Tylenol. Finally, I arranged myself among all the pillows on my bed with a heat pack on my back.
By midnight, I was already stirring.
By 1:30 a.m., it felt like daggers were digging between the ribs on my lower left back. When I could no longer stand the pain, I tried to switch positions. Once on my back, I felt like I couldn’t breathe, so I carefully continued the journey to my left side.
The movement seemed to awaken a beast: I felt both a dull throbbing and a sharp pain all over my back as well as a tightness in my chest, which made me unable to take full, deep breaths. I worked up the courage and the strength to slowly pull myself up to a sitting position. This is where I stayed for a while until every shallow breath caused acute pain in my chest. By this point, it was 3:30 a.m..
I pulled myself out of bed. I warily shuffled past my twin infant boys’ room, thankful they were sleeping restfully. I knew from past experience that lifting them out of their crib would be impossible in this state. I gingerly continued past the door behind which my 4-year-old boy was resting peacefully, knowing he’d be counting on me at 7 a.m.
Slouched, I dragged my feet to the bonus room where I gingerly lowered my aching knees to my yoga mat and tried to gently stretch my back. I could already feel the stiffness setting in, but at least the stretching allowed me to get some deeper breaths of air into my lungs.
By 5 a.m., I was able to breathe normally again, and the pain was mostly gone. I tucked myself comfortably back into bed beside my husband, who had thankfully been able to rest despite all my moving and writhing.
By 6:30 a.m., it was time to start the day. By this point, the stiffness had set in; I couldn’t turn my neck sideways or bend it up or down, so I walked like a robot to the shower to run hot water on my broken body.
This happened nightly for months.
I came to dread nights. I was so exhausted. I was unable to function like the wife, mother, and friend I wanted to be.
It would have been hard for anyone who wasn’t close to me to know about my struggles. I would usually feel flexibility return to my body by 10 a.m., and anyone who saw me that day would be unable to guess that my body was letting me down.
I distinctly remember this picture my husband posted on Facebook of me with the kids on Mother’s Day in 2018. We looked so happy, but I was a wreck that day.
I wondered if my 120-pound body was so wrecked after carrying twins full term that this was going to be my new normal. I knew life couldn’t go on in that way, but after seeking out countless health professionals and therapists, I simply didn’t know where else to turn for help. I was desperately searching for answers to my pain and felt desperately sad about missing out on the joys of a young family.
Ankylosing spondylitis, or any other incurable disease for that matter, wasn’t on my radar.
In addition to surviving, I needed to become my own health advocate. I rolled up my sleeves and began my fight for answers.
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