Learning how to walk

I have to learn to walk, again and again, until I adapt my walk to my body—my pace, not my idea of pace

Photograph by Emma Simpson

Dear hopeful reader,

For a chronically ill person, sudden health crises are a given. Dealing with chronic pain and acute symptoms can be debilitating, difficult, and wearisome. Existential worry sets in, and doubt. When you thought you’re feeling better, stronger, more confident, your body—and life—shows you otherwise. You try to find some spiritual meaning in all this. And all you can do is try to adapt to your new normal. You relearn the art and act of walking.

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A year ago I got sick with a virus. A week after I recovered from it, I began experiencing heart palpitations—if not more like heart throbbings—and the rise and fall of blood pressure, provoked by little things like the shift in weather patterns, the cold, heat, supplements, medicine, drinking, eating, and such.

Just before I got sick, I was lifting weights, doing push-ups, dancing to Marina Diamandis. I enjoyed coffee, the daily ritual of a cup of joe. I could savor comfort food from time to time. I felt on top of the world, closer to healing. And then I fell down—metaphorically. I could do none of that for a while.

But I had to pick myself up. I’ve been through health crises before, some quite scary. I always got back up. And I had to again for myself, for all the spoonies rooting for each other. I began walking again, slow and steady. Then I picked up pace. Then I walked for longer. Through the pain and throbbing, I had to. I learned to adapt, to walk again.

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Doctors didn’t know what happened to me then. Every test I’ve done showed a negative result—heart strong, perfect numbers. After a year of searching for answers to this brainteaser, a doctor who searches for answers too suggested it may be small fiber neuropathy. He’s cared for so many patients who got it after a bout of virus, like COVID-19. But only a handful of physicians know about it, let alone diagnose it. He couldn’t diagnose it himself. A well-versed neurologist could.

Small fiber neuropathy can be caused by an infection, diabetes, vitamin B12 deficiency, an autoimmune condition, among others. It damages nerves and symptoms can affect and migrate from one organ to the other such as the heart, bladder, the digestive system, and more. Feels familiar and everyday to me, even before the blip.

I don’t have diabetes. I have high ANA markers, but all the autoimmune conditions I checked for came back negative. I have had Lyme, Mycoplasma, and Epstein-Barr in the past, and whatever this virus was that made me feel worse. Could they have damaged my nerves? Could have all the prescription drugs and supplements I had to take over the years? Is there some other kind of mysterious autoimmune condition affecting my nerves? Endometriosis? What? I have an appointment with a neurologist at the end of September. I hope to get some answers.

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I’m relearning walking. Three weeks ago, I got cocky and did zumba twice in a day. The audacity, the hubris! How dare I! Well, the second time was a bad idea. Even while working out I already felt the sciatic nerve ache. And I already have chronic sciatic pain, just not as pronounced. Then it went downhill for me.

The first two weeks all I could do was limp and walk at a snail’s pace. Everything I did hurt—walking, sitting, standing, lying down. In excruciating pain, time slowed. I counted hours every day, as I was working too. Diverting was hard; even The Office didn’t help much. I looked forward to falling asleep, to dream—when pain is unfelt. I wished and prayed for relief, release. I still walked every day. Not walking meant no blood flow, stagnation, worse pain.

Then I got brief moments, then hours, in each day that felt more or less bearable. Then some days I felt better and could do more. Those days I sang and laughed and joked and appreciated life. I thanked whoever is out there watching over me, giving me strength, resilience, patience, and courage when I’m about to give up. And my body for carrying so much pain and giving me a break once in a while, for being alive.

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I’m so done with the sciatic pain. It’s been over five years since my mysterious pain started that never went away, just died down from time to time. All my tests came back fine too. Although the chiropractors painted a different, scarier picture, and hurt me further. I don’t trust them anymore, and I wouldn’t trust any of them ever. I did everything there is to alleviate the pain, to heal from it, but it remained, and the mystery surrounding it did too.

And I fooled myself all these years, thinking I have to put up with it. Or I deluded myself with the thought that if it mysteriously appeared, it could mysteriously disappear. Then it reared its ugly head with a more painful vengeance. A burning that is also bone-deep, numbing, gnawing, and stiff, as if Medusa petrified me from the waist down.     

I’m so tired, I’m so done. I want to heal. Or if that’s not a reality for me in the future, I want to at least manage the pain—all my pains—better. I want to find the remaining pieces to my puzzle, I want them to fit. I want to live and thrive. In some ways, I’m stronger than ten—even fifteen—years ago. I’ve overcome so much. But as I get closer, feeling happier and freer, I’m thrown further away.

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Small fiber neuropathy, I read, causes pain—such as burning, tingling, numbness, electric-like sensations—in the feet, hands, but it can also manifest in other areas, including the back. It can affect any nerve. Could my sciatic nerve pain be caused by it or be made worse because of it? Could I have had it for longer than a year? That is if the diagnosis will check out. I hope it will, then everything will make sense. I don’t want to live in mystery any longer. I’m ready to accept answers and healing.

I’m in two small fiber neuropathy groups on Facebook. People are so kind and helpful. And they all suffer greatly. In fact, living with small fiber neuropathy can be disabling for some. Certain individuals eventually stop working, let alone are able to do simple daily tasks. They’re lucky if they have a strong support system. But some lose friends, family. Those groups become their only support system.

I wonder how they keep sane, how they don’t give up, how they keep their dreams alive. I wonder how I do it still too. I don’t know. As long as I’m still alive, I’m lucky, and there’s still so much to live for, look forward to. And I already have so much. Unconditionally loving, supportive parents and husband. Friends who care about me, who understand when and why I’m quieter. A cat that knows when to curl up beside me, calming me. I have dreams. And I have hope. It’s in my name.

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I try to find meaning in my health crises. It’s not my fault, and these things happen, but I’ve also made choices that haven’t necessarily been good for my well-being over the years. And if I’m vulnerable, I have to be more careful. I have to listen to my body. Be gentle, be still when need be. I try to race a marathon like a fully healthy person does the moment I feel even an inkling of strength, but that’s not me. I have to be the turtle, not the rabbit. I have to learn to walk, again and again, until I adapt my walk to my body—my pace, not my idea of pace. And someday healing will be within reach, and I’ll reach for it. 

And in other words, I’m back

Hello m’dears, I’m back! I’ve been gone for longer than anticipated for the aforementioned reason. My health has been unstable as of late, but I’ll be seeing doctors, getting to the bottom of it all, finding my way to heal and better manage my conditions, I hope.

I have a lot of catching up to do. But I look forward to reading y’all and writing. I have so much I want to write about—books, shows, movies, video games (obviously), culture maybe. And I look forward to resuming my guest posts in time.

I may be writing less frequently while I’m going through this hurdle. I’m also thinking of going unpaid and instead accept donations should anyone feel inclined to give. I know certain readers like to tip and not be fully committed to a subscription. And that’s totally understandable.

How have you been? What have you been up to?

Yours hopefully,

Nadia

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