How am I coping with chronic pain? Let’s see …
My pain hasn't relented, but neither has my support network
Last in a series. Read parts one and two.
I bought shoes I wasn’t sure I’d wear.
That seems like a trivial statement, I know. Except the shoes cost 119 SGD ($89) including shipping, and I hadn’t had any income for six months at the time of purchase. Oh, and let’s not forget that I was in the hospital for vomiting and severe, chronic spinal pain. Though my pain specialist and neurologist tried their best to get me home quickly, there was no guarantee I’d make it home in time to outfit my feet in rose gold shimmer on the Lunar New Year.
It was a stupid thing to do; I’ll acknowledge that. But hey, it’s tradition to buy new clothes for the Lunar New Year. Who was I to argue with tradition? Hence, I hit the checkout button in that stupid leap of faith.
Thank God for graciously cushioning the impact of my stupidity. I was discharged (again, for the umpteenth time in six months) on the eve of the Lunar New Year. I got to wear the shoes in the end.
Where I am now
If anyone asks me how I’m doing emotionally, I have a mind to use those rose gold shoes to illustrate it: I am keenly and painfully (ha!) aware of my condition’s fragility, but I’m acting as if I’m not. I’m making impulse purchases. I’m making plans that cost a lot of time and energy besides money. I’m essentially trying to “fake it till I make it” when it comes to having a life beyond chronic pain. Because if I don’t, I may lose my mind.
Moreover, it’s my doctors’ orders. My neurologist often says to prepare for the worst but hope for the best. My pain specialist has encouraged me to find normalcy amid the madness of my many hospital admissions. My psychologist reminds me every time I see her to take things one day at a time.
That’s not to say things will ever go back to the way they were before last July, when this intense leg of my chronic pain journey began. My family, my medical team, and I have made a lot of adjustments to keep me functional.
A few examples are: my medications, which now include new antidepressants, fentanyl patches, and lidocaine patches; the number of laxatives I’m on to counteract the constipation caused by the fentanyl; switching to an adjustable hospital bed frame and an air mattress that shifts every 15 minutes to take pressure off my spine; my team suggesting I stay home for as long as possible until my neurologist can admit me to the neuro clinic if I must be admitted, instead of potentially enduring the discomfort and overstimulation of the emergency ward for close to 18 hours again; more frequent naps.
In the grand scheme of things, the changes aren’t that bad, even if they do add up. And it looks like the period of trial and error with my opioid prescription is over. Administering only half a fentanyl patch — which releases 6 micrograms per hour — seems the way to go if I want to avoid vomiting. Should it be inadequate on top of the rest of my pain prescriptions, my pain specialist figured out that phenol and radiofrequency ablations (which uses heat to destroy tissue) will appropriately reduce my nerves’ sensitivity to pain.
As for corrective spinal surgery? Well. If I can’t handle more than 6 micrograms of fentanyl per hour, I believe it’s safe to say I probably wouldn’t survive such a major surgery at this stage of my SMA.
Part of me does mourn the loss of that choice. The fantasies of no longer being a hunchback or worrying about my spine’s curvature worsening are definitively dead. I think about things like, “If I’m invited to another conference abroad, I’ve no idea how my hunch will fit the stiff seats on airplanes.”
Still, my pain specialist has conveyed to me that my medical team is always looking for solutions for me. The back brace I’m wearing now from the hospital’s orthopedic department and the custom seat of my power wheelchair will at least slow the deterioration of my spine. That’s enough for me — for now, anyway.
Where is this road going next?
There’s a quote from John Green’s novel “The Fault in Our Stars” that I’ve thought a lot about lately: “Pain demands to be felt.”
After the last several months, I can say that my pain sure does not relent. But neither have the people who gathered around me to help. Amid the grief for my body and lost opportunities, I have fond memories of video game discussions with my pain specialist, nurses celebrating my birthday in the hospital, and the power of my family’s and friends’ love. Therefore, no matter where my pain journey takes me next, I know I’ll be fine.
And, hopefully, I can help others on their own journeys.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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