Flare

Written by Geni McCallum

Published on Too Much & Not Enough, July 29, 2025.

On living with non-linear disability, chronic pain, fucked medical systems, and learning to walk and trust my broken body again.

One Boxing Day, I began to feel tightness in the back of my legs and butt. By the next day, my back began locking up and causing pain. Within a few days, that pain became my entire world. Painkillers didn't work, resting didn't work, and I ended up going to A&E four times in all. They kept sending me home with opiates even though I could now barely walk, was in constant excruciating pain, and my limbs had tightened so much that I couldn't physically straighten them anymore. I found out that if I got myself to the shower and put it on the hottest setting, I could stand it somehow. It tricked my brain into some reprieve from the pain. I could no longer sleep for longer than a few hours at a time and was barely eating. I couldn't see my Doctor because they were on holiday till January.

One night, I screamed at my sister that I needed an ambulance because I wasn't coping with the level of pain. I felt like I was going completely insane. I would have done anything to stop the pain. She rang an ambulance, and they never arrived. Two hours went by. The operator said that there weren't enough ambulances that evening, and other people needed the ambulance more. I don't doubt she was right, but I could no longer get into a car or go to the bathroom, and I was losing my shit.

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Despite the exhaustion and extra pain, I ended up forcing myself into a car because there was no other choice. That night, I was in the A&E waiting room for hours and had to call myself an Uber at 3 am to go to the After Hours because I couldn't sit down, and my legs were going to give up if I kept pacing. I saw a Doctor and he did a physical examination during which he pulled my legs up to straighten them. I screamed at him to stop, and he looked at me and slowly let my legs down. He then gave me two muscle relaxants. I took them, they had no effect, and I went home.

My life now felt endless. I was almost always awake, stuck lying on my back, on my sister's bed. I only got up when I had to pee in the shower or when the pain was so bad that I needed to burn my back with hot water to have a break. I was constantly on Panadol, ibuprofen and opiates, which I felt made no difference. I meditated when I could, I breathed deeply to try and relax my body, but by now, it was so inflamed that no matter what I did, I was in some element of extreme nerve pain at all times.

I finally got to see my Doctor, and she had no idea what was happening. She didn't physically examine me. If she had, she would have picked up that my legs no longer had reflexes. I got a prescription for nerve pain blockers, which caused my optic nerve to dull, and the world became blurry for a week. I had to stop taking them, but they hadn't alleviated the pain anyway.

The pain began to finally subside after my sister took me to my chiropractor three times a week. I felt like I'd been in a car accident, but I had more movement. My muscles were sore from being so tense for so long. My neck and back were still locked up, and I couldn't lift my arms above my shoulders because I would get electric shocks when I did. I know now that my arms and legs had significant nerve damage (polyneuropathy).

I've had nerve damage in my arm before, from when a cocky doctor decided to try and take blood from a deep vein (he failed). So I knew the feeling in my arms was the same, and when I began to get sharp pains in my arms and hands, I recognised it as healing pains. I still couldn't use my phone or type because of the pain and tremors. I did manage to dictate a hilariously terrible email to my lecturer to explain why I hadn't been active in my Summer School paper, though.

My arms slowly healed, but my legs became weaker and weaker. I could barely get off the toilet or walk anywhere. My Doctor tried to get me an appointment with a neurologist, but the waitlist was huge. Meanwhile, I began to lose sensation in my lower body. The skin felt strangely numb, and it ran from just above my belly button to my ankles. I later found out that it's almost impossible to keep walking if your feet go numb. I was lucky.

I ended up finding a private neurologist who had just moved to Ōtautahi and could see me within a week or so. I went and saw him, and he examined me and realised that I had no reflexes in my legs, and I could barely lift them a cm or so off the table (classified extreme). He had me admitted to the hospital.

I had an MRI and a nerve conduction test (where they electrocute your nerves for an hour to see which ones are working). MRIs are scary because everything in your brain tells you that you should get the hell out of there. The tiny space, the crazy loud noises, but you close your eyes, you listen to your '60s funk playlist from the hot MRI technician's cooking playlist. You stay still because if you don't, then you'll never know what the fuck is wrong with your body. A nerve conduction test feels like a torture device because it essentially is, but you stay there and call the technician a nice sadist because if you don't, then you'll never know what the fuck is wrong with your body.

I would walk around my ward and back to my room with my late Gran's walking stick five times a day because it kept me sane and my muscles working. As I shuffled around the neurology ward, I noticed that I was one of the only people in my large ward who could walk by myself. They made me wear a sign that said "Keep an eye on me" as a compromise for letting me walk by myself. One of my nurses said I was the only patient she had who could go to the toilet by myself, even though I had to have a contraption that I sat on that was high enough for me to get up from. I was the lucky one in a ward full of severe brain and spine injuries - it certainly put shit into perspective.

I was told I would have to get a lumbar puncture to make sure I didn’t have multiple sclerosis. I was terrified because that involves them putting a very long needle into your spine and extracting cells to test. But on the day of the procedure, a neurologist noticed that my legs had improved slightly. They told me they didn't know why I had polyneuropathy, but they suspected it was an autoimmune issue, especially since I already have Immune Thrombocytopenia (ITP), which is also an autoimmune disease. The term ‘autoimmune disease’ just means your body’s immune system is attacking your body. I could go home as long as I kept improving; if not, then I'd have to come back to get my spinal fluid tested.

Since then, I have slowly rehabilitated. My legs still don't work exactly how they used to, and I don’t have the same strength or control over them. It took many months before I could use the stairs or the bathroom without crutches. Early into healing, my legs stopped working one night when I was still living with my sister. I had to drop forward down to the bathroom floor onto some towels so my sister could then drag me to my bedroom and boost me up as I slowly manoeuvred myself up onto my bed. Even though I did cry when I almost smashed my face into the bath, the complete absurdity was hilarious at the time. I found that disability often means putting your pride and sometimes, sadly, your dignity to the side to get basic necessities done.

When I was able to, I drove for the first time and was so proud because I could now take one small step from my garage without holding onto anything. I got tired quickly and had a bunch of aides to help me pick things up, stop me from falling, etc., around the house. I would get stared at because I would look weird when I walked, I waddled, and sometimes lost my balance, but at least I could actually walk. Using the cane helped my confidence, but also alerted people that I had a disability. People have such a narrow view of what someone with a disability looks like, particularly when you’re younger and it’s not visible. I couldn’t get up from most chairs and spent most of my day on my bed working, studying or watching movies.

I’ve had family and friends talk about how brave I was and talk about how my attitude was so positive. What I want to say about that is that this journey of trauma, pain and disability and the subsequent flare-ups since have taught me that I have a lot of resilience. Despite that resilience and my determination to heal, I have experienced every feeling during this time, many nights and days of crying and feeling utterly terrified and hopeless. Extraordinary levels of pain that felt like I was losing my sanity, along with moments of pride and positivity at the smallest gains. I have laughed hysterically at my body failing me, but I have also lain on the floor on my stomach, crying with deep frustration. Bravery isn’t a choice; there was no other choice. I either kept moving through this or I killed myself, and perhaps due to past depressions, I knew I wouldn’t do the latter.

With my incredible physio (Hannah, the fucking lifesaver), I did gain back as much strength and feeling as I could. When the pain stopped, I became euphoric for a few days; everything felt incredible. I don't feel like that anymore, but I can walk and have most of the feeling back in my body, and I know how incredibly fortunate I am to have that. I'm also no longer terrified of going for a poo, which is a big bonus too.

What has happened to me could potentially happen again, but I can’t let my brain go into those what-ifs. At the time of writing this, my last flare-up was a few years ago, and I noticed the signs and went straight to bed and rested for a week. I’m so grateful for where I’m at today.

My final note? Being a human is hard enough without everything that comes with disability. If you’re fortunate enough to have it, don’t take your mobility for granted and more importantly, please don’t be the next asshole who stares at someone who doesn’t.

2025 update: My incredible friend Sarah suggested I might have Mast Cell Activation Syndrome (MCAS), and my Doctor agrees. We’re slowly beginning some treatments to see if we can reduce my body’s extreme reactions and severe inflammation. TBC.