Living with Transverse Myelitis: Ami’s Story

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Guest post: What It’s like Living with Transverse Myelitis by Ami

I’m Ami, I am 24 and from Norfolk, England. I am living with Transverse Myelitis, a rare neurological condition. I was diagnosed in 2018 but symptoms became evident in September 2017.

One of the symptoms I experience is changes in sensation – the worst being in my hands. It feels like I can feel the insides of my fingers. The best way to describe it is it’s like wearing latex gloves but constantly – the rubbery bumpy bits inside, that’s what it feels like.

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Transverse Myelitis is when the spinal cord becomes inflamed. As my cervical (neck) and thoracic (upper torso) were affected, this had a devastating impact on my mobility. I was unable to move my head, my arms, my body and my legs. I had no control. It took 3 months, with the help of intensive therapy, to learn to sit up and stand up. Nobody knew if I would ever walk again.

Due to my low level of mobility, along with other conditions and impairments, I am unable to physically work. However, I have recently joined the team at BLOG Unwritten, a new and upcoming online magazine which will not only be about blogging but lifestyle too. There will be something in it for everyone and I am really excited to start!

My home is currently undergoing adaptions and is in the process of the garden being changed and made accessible. I am waiting to have a chair-lift installed which will enable me to share a bed with my fiancé (I currently sleep downstairs in the living room), have a shower or a bath (I have to go to my Nan’s bungalow to have a shower) and spend more time with my Guinea pigs, Loki & Thor.

Ami sat in her wheelchair with her fiancé standing next to her both sporting Marvel t-shirts - Living with Transverse Myelitis

The only times I go out are when I have physiotherapy, hospital appointments and food shopping. Once the garden is done and a ramp is placed at the back door, I will be able to go out more. When I do go out, especially places that I don’t visit often, then I need to plan ahead. I have to check if the places are wheelchair accessible – which can be frustrating if they are not.

Daily life can be a bit of a touchy subject for me to talk about. I will be honest, I need help with everything, especially toilet needs, washing and dressing. My dignity took a big hit when I could no longer do these things for myself, but I’ve just gotten used to it. It does get me down sometimes – forgive me for being blunt – that I can’t wipe my own bum. I was a very private person but since this all began, I have had to learn to trust others more and it has been hard.

Ami lying in a hospital bed with her fiancé and a golden retriever - Living with Transverse Myelitis

To begin with, my fiancé and I were arguing all the time. I was undiagnosed and my health was deteriorating rapidly – I was depressed and suicidal. He did not know what to do or say and neither did I. My family did not believe me when I genuinely thought I was dying. Understandably, this upset and angered everyone. It wasn’t until I was admitted to ICU, because I wasn’t waking up, struggling to breathe and was put in an induced coma, that everyone realised just how ill I was. I was angry that nobody believed me sooner but it’s not their fault.

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This is what Transverse Myelitis can do if left untreated. It attacks the respiratory system causing breathing difficulties.

Ami lying in a hospital bed - Living with Transverse Myelitis

My fiancé and I are stronger than ever, my family and I are closer than ever. Time is too precious.

My mum and my fiancé care for me. I did begin to receive carers from social services, but it was the worst experience ever and I had to cancel them after 5 visits.

When I started to lose my hearing and eyesight I lost a lot of so-called friends. By the time I was experiencing symptoms of Transverse Myelitis, I was down to 2 very good friends and thankfully they have stuck by me. I would rather have 2 good friends than a bunch who only pick and choose when they want to be friends.

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The one thing I regret since being diagnosed is I was never brave enough to take risks when I was more mobile. I spent all my time being scared of what could go wrong and ultimately, it all did go wrong. Nonetheless, since this has all happened, I have achieved so much in such a short amount of time and it’s all the things that make me happy. Whether it be writing or volunteering – I am doing what makes my heart happy.

Where to find Ami online





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2 Replies to “Living with Transverse Myelitis: Ami’s Story”

  1. My friends daughter(10) was diagnose with TM. My heart is heavy for them… what can I do as a mother myself and as a friend? How can I support her from where I’m at… what can I do… it breaks my heart….

  2. You have many things in common with me Ami, there are some differences but we have many things in common. Unlike you i have been sick most of my life (Since i was ten years old, I am now 29), however i rapidly became severely ill during a flare up of my neurological disorder in 2015 and became wheelchair bound and was sent to a nursing home where I required to be taken on and off the bedpan for toileting, needed to be washed and dressed by the aides, needed help transferring from bed to the wheelchair and I couldn’t even sit up on my own. Also like you. when I first took the turn for the worst everyone thought I was just being overly dramatic or looking for attention. As the years and more testing went on it has been proven that it was nothing in my control but acutally a worsening of my debilitating degenerative neurological disorder small fiber autonomic polyneuropathy. Like for you my mom and close friends eventually came around.

    I like the phrase ‘doing what makes my heart happy’. I think everyone should do what makes their heart happy. Life is too short and precious not too.

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