I was born with Bilateral Choanal Atresia, a malformation of the nasal passage. On my first day in the world I had my first surgery. Since then I’ve had multiple surgeries and it has been corrected.
We thought that was the end of my fighting, but then I woke up completely blind when I was 4. I was diagnosed with Neuromyelitis Optica 10 months later after a further two relapses – one of which left me paralysed for a few weeks. It was a long scary mysterious process. I was tested for the NMO antibody, which tested positive, I was put on immunosuppressants to prevent my immune system from attacking my optic nerve, spinal cord, and brain. My challenging childhood was spent in and out of hospitals for various appointments and admissions. I had 2 more relapses while my medication was sorted out. Despite that, I was happy and independent.
I’m blind and NMO also affects my mobility due to spinal cord damage. All my schooling was done with accommodations and a 1-2-1. I’m fully contracted in English and Welsh Braille too! For the last 2 years I’ve been on steroids, originally to swap my medication which had made me severely anemic. It has left me with Adrenal Insufficiency and I’m stuck on steroids with no improvement. Now I’m in a wheelchair due to chronic pain & fatigue from them!
It has affected my mental health and led to self-harm but through all the tears, psychotherapy and support I’m still here. But it’s a battle every day. Pain flares are the worst and I lose all hope during those times…
My illness has caused fatigue, pain, sleep issues, anxiety, depression, sensory overload, blindness, bladder issues, nausea and more! I now require the use of a catheter as I can’t feel the messages correctly. Using a catheter at 15 is quite dehumanising, luckily I use a really compact catheter which makes it easier to go through! My bowels don’t listen either and my meds cause a lot of constipation so I often go days without pooing which causes more pain. Due to not being able to feel heat I often have severe burns. As you can tell this disease is so much more than paralysis/ blindness. That’s one reason why I find it important to raise awareness.
I recently won the BBC Teen Hero Award 2016 for my work raising awareness of chronic illness! This was an amazing, exciting and overwhelming experience – it proved to me that I could succeed despite this. My work is done on social media and my organisation called YoungPeople ChronicIllnesses, a page that shares the journeys of people, raises awareness and tells the stories of others. The organisation has saved my life. The support from the community never fails to amaze me whether it’s an update on my poo, pain or Netflix recommendations! Using my experiences to help inspire others has been really rewarding and I hope to continue working more in the future!
My biggest battle has been against the crippling chronic pain and endless fatigue. I’ve tried lots pain medications but there’s been no luck! So I’m dedicating my time to
finding new options at the moment. I’ve even had to take medical exemption from school because of the pain. Recently, I’ve been bed bound for months because it’s so bad.
Sometimes I feel utterly defeated but I’m not giving up. I have constant anxiety, no idea what my future holds. Each day is a fight. Therapy really helps me get through these feelings.
I have a lot of online friends who are also spoonies and we have a group chat, Skype calls, sleepovers and normal friend time but from our own beds and online.
I am grateful for the support I have. Thankful I have a good medical team around me & the NHS. Over the years I’ve learnt so much, I’m wise beyond my years. I know I’m strong enough to get through this. Despite being disabled I am able to succeed in life. Hope fuels me. I have hope in research. Even if the medications available right now won’t help, research will evolve and so will new treatment options. Too many lives are ruined by chronic diseases of all kinds – this is why I do the work I do. Raising awareness has a ripple effect allowing people to learn more about the diseases and find ways to help us, then that raises even more awareness!
You’re inspirational, Niamh. Take care and stay safe. Xxxxxx