My meningitis experience
When I was seven years old, I was diagnosed with meningitis. I went to school one morning feeling completely normal, but a couple of hours into the day, I started to feel a bit poorly, but it didn’t seem like anything out of the ordinary. My teacher sent me home from school and I remember saying to everyone “See you tomorrow!” because I thought I’d feel better the next day.
Later that day, though, my mum grew more concerned about me, especially because I wasn’t eating. By the evening, my symptoms had escalated: sickness, diarrhoea and what looked like random bruises appearing on my skin. That’s when my parents decided to call an ambulance.
When the paramedic arrived, they immediately recognised the symptoms and started to treat me for meningitis. I don’t think anyone had suspected meningitis beforehand until this rash started to develop.
Within hours, I’d gone from feeling a little unwell to being put into an induced coma. The doctors told my parents I had less than a 1% chance of survival. Whilst in my coma, my limbs began to die from the infection. When I woke up, they were still attached but completely lifeless. It was clear to me, even as a child, that amputation was the only solution.
Adapting to life as a quadruple amputee
I had both my arms and legs amputated below the elbows and knees. The transition was challenging but I was very matter-of-fact about it. As a resilient kid, I didn’t fully grasp what was happening and just got on with things. I remained in hospital for a couple of months - I was desperate to leave and get back to school to have a bit of normality.
The doctors and nurses started to teach me how to use my limbs straight away as I couldn’t have prosthetics fitted immediately as my wounds needed to heal. By the time I left the hospital, I could feed myself and write. It was really difficult, but I was determined and kept trying new ways of doing things.
When I left hospital, I was originally in a wheelchair for about eight months, so I had to adapt to using that. Then I got my prosthetics fitted and I had to relearn how to walk again. Over time, I learned to navigate life with prosthetics – my first pair with bright pink Hello Kitty blades which I loved!
I’ve always aimed to be independent and learned to adapt to the challenges I faced as I got older. People are surprised at how little I’ve had to adapt things in my daily life. I live alone, I drive, I get myself dressed and I have a full-time job.
After-effects
I’ve also had to live with some aftereffects that some people may not immediately recognise. The meningitis affected my growth plates, especially in my shoulders which I’ve had surgery to correct. I also really struggle to regulate my temperature. Before I got medication to manage it, I would get really sweaty and flustered - I’d do something for a few minutes and have to lie down because I was so unbearably hot. It’s common in amputees as you have less surface area to lose heat through and also exert more energy, but I don’t see it spoken about enough. This is something that really affected my confidence, especially as a teenager.
The importance of sharing my story
Social media has been a great tool for me to share my story. After I explain what happened to me, most people will say “I didn’t know meningitis could do that to you”. I want to change that. There needs to be more awareness about the after-effect of meningitis too. It’s also important to share my story because when I was first coming to terms with being an amputee, there weren’t any role models for me to look up to. By sharing my story, I hope others in similar situations realise that they are not alone.
Since posting about my experiences online, I’ve had so many people reach out to me. Whether it’s people who have been through meningitis themselves or doctors and occupational therapists who ask me how to do certain things. I try to connect with as many people to educate and raise awareness.
Support from Meningitis Research Foundation
Meningitis Research Foundation really supported my family, especially when I was first adjusting to life with my disability. When I was younger, my family and I attended many events with Meningitis Research Foundation. It was great for my parents to meet people in similar situations, meet the team and hear about support that could be offered.
When we were at a point where we felt there was nobody we could relate to or look up to, Meningitis Research Foundation really did provide that support network of people in similar situations. In day-to-day life nobody understands.
Read more about how Isabelle has navigated life as a quadruple amputee in our Q&A.