Guest post: What It’s Like Living with Transverse Myelitis by Ami. Originally posted on georginabanks.com.
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.
Transverse Myelitis Symptoms
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.
What Is Transverse Myelitis?
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.
Mobility and Accessibility
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.
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 with Transverse Myelitis
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.
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.
This is what Transverse Myelitis can do if left untreated. It attacks the respiratory system causing breathing difficulties.
The Impact of Transverse Myelitis on Relationships
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.
I Wish I Knew…
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 despite living with Transverse Myelitis.
Where to find Ami online