My name is Niamh, I'm 15, from the UK and this is my story.
From the day I was born I had issues with my health. I was born with Choanal Atresia, a congenital disorder where the back of the nasal passage is blocked with abnormal tissue. I had it in both nostrils and it was preventing me from breathing. As soon as they realised I was then rushed into surgery for the first of 9 surgeries. By the time I was 3 my surgeries were complete but I still have issues to this day. I have to spray medication up my nostrils everyday to keep them from drying up, 8 can't blow my nose and when I sneeze it's like an explosion. I spent the years of having surgery with stents in my nose to keep the holes from closing up, which I didn't enjoy so I would pull them out and frustrate the doctors. Typical me. We thought that after such a "traumatic" start to life that this would be it for my health complications, wrong.
Have you ever thought what it would be like to wake up sick one day and never get better? This is more than just a thought for me, this is reality. One day I was just sick, a high temperature and throwing up it was one of those "it'll pass" things and the next day I woke up completely blind asking my mum to turn the lights on. It wasn't the lights that needed to turn on it was my now permanently damaged optic nerve.
I was diagnosed with Neuromyelitis Optica 10 months later after a further 2 relapses – one of which left me paralysed for a few weeks. I slowly regained my feeling and strength and learnt to walk again but life was never the same. Diagnosis was a hard process because what I have is so rare especially in children - at one point there was talk that a brain tumour was causing my issues and my parents were beginning to plan my funeral! I was tested for the Neuromyelitis Optica antibody after ruling hundreds of other causes out and it tested positive. I was put on immunosuppressive treatment to prevent my immune system from attacking my nerves in my spinal cord, optic nerve and brain again.
My challenging childhood was spent in and out of hospitals for various appointments and admissions but luckily my care team were all lovely and made the time easier to cope with. I had two more relapses while my medication was sorted out, and I haven't had a relapse in 9 years but still face horrid symptoms everyday. However, I am now registered blind and NMO also affects my mobility, sensitivity, bladder and bowels and also energy levels due to spinal cord damage. I have been on steroids for the last 2 years and have had to come to terms with being in a wheelchair as I have lost so much strength from the side effects.
This happened because they needed to increase my immunosuppressant Azathioprine, but as I was growing, my body reacted badly to the increased dose. I became severely anemic and they needed to stop the medication and put me on steroids to keep me stable. I am on a different immunosuppressant called Mycophenalate and trying to wean off my steroids but it’s a long process as my adrenal gland has decided to take a very long nap so treatment has been prolonged. I'm now in the process of dropping my year long maintenance dose to nothing even though my adrenal gland is yet to wake. We hope that it'll shock itself back into action.
One of the hardest things to cope with was the weight gain, I struggled with this because I was already battling with hating my body. Eventually I realised that there are bigger problems here than not fitting into small sizes. Problems like the constant chronic pain I suffer with in every part of my body, the pain seems untreatable and I've tried all kinds of medication and therapies. I'm hopefully being admitted to Bath Pain Clinic to be helped for a period of 3 weeks in 2017. Living a life in chronic pain while your body is busy trying to cause the next problem is utterly exhausting. I get fatigued just brushing my hair because it's so much movementand pain so I require a lot of support. There are days where I can't even talk, walk, see or think because I'm drowning in the depths of fatigue and pain - these are the worst days. People take simple tasks like that for granted.
I currently take between 20-30 tablets a day with other symptom control medication. And medication for the side affects of medication it's a vicious circle of symptom after symptom. In year 9 my school attendance was around 20% because I desperately needed my wheelchair but the school was not accessible and I feared the bullying I experienced. Bullying I wouldn't wish upon anyone. I've been a victim of a crime, a hate crime called ableism which is equally as serious as racism but seems to go unnoticed. But I try my best to ensure that this kind of cruelty is punished like it should be by telling my friends how they can get help.
Thankfully I started a new school with a lot of really great adaptations. I'm only doing 6 GCSE's because I need to focus on my main topics to give my full potential. Before the pain, fatigue and brain fog my school work was brilliant but now I don't even know what day it is because I'm on that chronic illness timezone where you eat and drink whenever you can to boost your energy and take naps any time in any place. With the help of my visual impairment support teacher each lesson is made accessible. She recreates everything so I can access it physically and visually. Without the support of my 1-2-1 moving schools would've been almost impossible. I'm lucky to have the support that most people know nothing about and I'm determined to make it clear to others that it's okay to ask for help. At my new school I've had no bullying if anything the staff and pupils have just been really interested.
My illness and the uncertain future ahead of me have caused quite a variety of mental health issues but thankfully since seeing my psychologist and taking antidepressants my mental health has improved. On September 30th 2016 I was a year clean of self harm and that is a huge achievement for me.
My biggest achievement in life has to be the supportive friendly community me and a few international best friends created @YoungPeople_ChronicIllnesses. Our page has over 4000 followers on Instagram after only being up for one year. The other admins and I share our journeys fighting Neuromyelitis Optica, Ehlers-Danlos Syndrome, Cystic Fibrosis, Post Transplant Lymphoproliferative Disorder a form of cancer, Fibromyalgia, Complex Regional Pain Syndrome, Median Arcuate Ligament Syndrome, Celiac Disease and lots of other illnesses. Our goal is to raise awareness of chronic, invisible, mental and terminal illnesses whilst sharing the stories of other people's journeys.
The thing I enjoy doing most is our spoonie Spotlight feature on Instagram where we share the stories of pether people fighting all kinds of illnesses. A spoonie is a person who has a chronic illness it comes from The Spoon Theory. The spoon theory is a illness metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are an intangible unit of measurement used to track how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person "recharges" through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished. Our page has changed our lives and it has changed so many others.
We've helped normalise illness and make people realise they're not alone there is always someone somewhere fighting a similar issue. It's amazing what a community can do when they all come together. So many wonderful memories thanks to my page and it's all from the comfort of my bed while resting. I may not have a normal life but I sure as hell have a social media life and I'm happy enough with that. My social media platforms are my life because I rarely manage to leave the house so I don't know what I would do without my followers continuous love and support. My page has saved my life without the continuous love and support I wouldn't be a year self harm free and I wouldn't be having amazing opportunities thrown my way!
On October 23rd I went to Wembley for the Teen Awards as a recipient of the 2016 Teen Hero award for being inspirational and courageous. I met many famous people, spent the weekend with my best friend and also met the Duke and Duchess of Cambridge! I'm so excited to be able to tell my story. It's only going to take one interested scientist to see it and want to do research for finding more treatment. I'm so proud of myself for facing all of my battles and showing that even though I'm sick I can do anything I just have to do it differently. I have been through hell and back but I finally feel like I'm getting somewhere and I now want to live!
At the moment my health is a mix of ups and downs, good days bad days, great medication, horrid medication. I take each battle as it comes and just hope for the best because giving up will not get me anywhere. Somedays I am just grateful to be breathing. It took me months to accept what was going on but it's life, it is what it is. I like to think that this is all just a part of my warrior training!
Niamh's Instagram: @youngpeople_chronicillness
BBC Radio's segment on Niamh: CLICK HERE