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My Transverse Myelitis Story

Spinal Cord Injury (SCI)


Initial Onset of Transverse Myelitis

On November the 3rd 2006, I woke up with an ache in my lower back. My son was 9 months old at the time, and I thought that I was probably sore from carrying him around the day before. On Saturday morning, the pain was stronger and I had sharp pain down my right leg from time to time. I had lunch with my parents, and I remember discussing the possibility of a pinched nerve, thinking I may need a visit to the chiropractor.  

The pain had progressed when I woke on Sunday morning. I had shooting pains in both my legs and they were twitching, sometimes uncontrollably. I felt as if I had a tight belt on around my waist and I had the constant urge to move my legs. We had dinner plans that night and as I was driving to the restaurant, my legs were twitching so much that I had to pull over, unable to control the pedals of the car. Dinner was a painful experience, I couldn’t stop pacing and the pain became intense. It was then I knew it was serious.  

That night I was in incredible pain. My stomach swelled up as if I was pregnant and my abdomen was on fire. I wasn’t aware at the time but I had already lost function in my bladder. The skin on my legs was prickly and hot. I spent the night on the shower floor with the water running over me. I don’t know why I didn’t call an ambulance, I should have. I just kept thinking I needed to take the kids to daycare and get to the hospital.

The Diagnosis: Transverse Myelitis

At about 5am on Monday morning, I crawled around the house making my son a bottle and getting my daughter ready for daycare. I called a family member to take me to the hospital. When I arrived, the nurses took me through to triage immediately and inserted a catheter…I’ve never felt such relief! Testing followed and I had multiple tests and scans to determine what was going on. Within hours I had lost all ability to move my legs. I had little to no feeling or sensation below my belly button.   After some test results, doctors told me they believed I had Multiple Sclerosis. They contacted my parents to give them the news and transferred me to the Princess Alexandra hospital in Brisbane, as they have a spinal unit and are more trained to treat spinal cord injuries. I was in shock.  

It wasn’t long before doctors at the P.A hospital had ruled out Multiple Sclerosis. Unfortunately, they were unable to diagnose me for another three weeks. I was one of those rare cases and the doctors had to do some research. All dignity went out the window at that point, I needed help showering, going to the toilet, and getting dressed. I even needed nurses to turn me over in bed. It was a particularly tough time, but I never allowed myself to go to a dark place. I never really believed that I wouldn’t get better, I always had hope.  

Eventually, I was diagnosed with Transverse Myelitis. I had never heard of it before and I had to do some research of my own. Transverse myelitis is inflammation of the spinal cord. The term myelitis refers to inflammation of the spinal cord; transverse refers to the pattern of changes in sensation—there is often a band-like sensation across the trunk of the body, with sensory changes below. Inflammation within the spinal cord interrupts communications between nerve fibers in the spinal cord and the rest of the body, affecting sensation and nerve signaling below the injury. Symptoms include pain, sensory problems, weakness in the legs and possibly the arms, bladder and bowel problems.  The symptoms may develop suddenly (over a period of hours) or over days or weeks.

Rehabilitation for Transverse Myelitis

I was moved to an older part of the hospital, the spinal unit, to learn how to look after myself now that I was paralysed. I didn’t want to get out of my pajamas or go to the dining room to eat. I didn’t want to make friends or socialize, I just wanted to be sick, get well, and go home to my children.                                                             

I spent many months in the spinal unit focusing on rehab and physiotherapy. I learned how to sit up, transfer to my wheelchair, and how to use the toilet and shower. Day by day, I gradually got better. I gained strength back in both legs, more in the right than the left. I learned how to stand. Most of my sensation and feeling came back, although altered. I learned how to walk slowly between the parallel bars, and I started to smile everyday…mostly because I met a boy! ;-)

After seven long months, I returned home to my family. I never made it out of the wheelchair, but I was told it could take years to recover, and I’ll never give up that hope. Today, I can stand at the bench to cook and clean and I stand up when I need to reach something up high. I’m able to walk small distances with a walker or crutches, and I can drive. I work part time, and I go to the gym. Best of all, I’m an active mother to my children. I don’t focus on the things I can’t do because I’m more than able. I chose to live a positive life and never give up. I’m happily married to the boy almost 11 years later, and I still smile every day!  

If you have any queries or you’re curious regarding my daily life, send me a DM on Instagram @wheely_living_life

I’m happy to raise awareness and answer any questions you may have about my disability.

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