Niamh's NMO

  Last Saturday balloons were let off worldwide in memory of Olivia Lannoo.    Olivia a 21 year old from Belgium fighting Neuromyelitis Optica passed away on Saturday 20th of May. The news came as a shock to us all despite knowing she was really unwell. Her resilience and power to overcome the toughest hurdles lead us to believe nothing could defeat her. Sadly, due to Neuromyelitis Optica complications we have lost our flamboyant star! She aspired to help others, become an OT, raise awareness and show off her make up art. Throughout her fight against NMO Olivia remembered to stay strong and be positive. She was an overcomer, thriver, warrior, talented and so much more. Even through photos her beauty shined through with that great big smile.   I spent time working on a few projects with Olivia like Spoonie Spotlight where she shared her story and #VisiblyInvisible, a project showing what make up means to chronically ill people. I admire Olivia for being a young wo...

My name is Niamh, I'm 15, fromnthenUK 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 sic...

30 Day Chronic Illness Challenge Made By CFS_Zombie Day 11 Why do you believe you have this illness? Bad luck or higher power or something else? Bad luck. There must've been some unbalanced chemicals that created the antibody. Things just happen.  Day 12 Briefly explain to a healthy person  what it is like to live with this illness ? Life with any illness is difficult but for me the hardest part is the chronic pain and fatigue. I miss out on a lot of things because of my body being silly. The chronic illness not only has a physical effect but all of the complications and worries bring psychological issues.  Day 13 Has your physical illness had any effect on your mental health? Explain . My physical illness has had drastic effects on my mental health. Weight gain from the steroids was one really hard battle I fought. I now love my body because I believe it looks healthy.  I get really upset when I get new symptoms because I hate having...

Having your independence taken away is truly one of the worst parts of having a chronic illness for me. Even though I'm registered blind I use to go out with friends have fun, cope without using my cane because I had learnt all the routes by landmarks, sounds and the floor texture. I would be fine you couldn't even tell I was blind unless there's were steps of course.  Even when I was on crutches all those times that my legs were fatigued from NMO I still manages to travel around with my friends and family. Last year that all changed when my body was not physically capable of being pushed further to its limits. We rented a wheelchair while on holiday and I realised how much easier it was. Although I hated being visibly sick and the stares of curiosity I would receive it was easier.  When we arrived once I had finally admitted that I needed HELP! We got in touch with physiotherapy who then ordered me a chair. A year later and I'm still in the chair unless I'm walki...

30 Day Chronic Illness Challenge Made By CFS_Zombie Day 6  If you could have told yourself something when you first remember these symptoms arising, what would you have said?  This is going to be the hardest thing you will ever go through - but each battle is going to make you 10 times stronger! You'll  be okay.  Day 7 What was the biggest realisation you have had  ? When I was little and me and my friends would play a came called MASH where you have names, cars, houses and stuff on paper and do a random future prediction and I would say I wanted to be a nurse and have a limo. Then a friend once said "but you can't see you can't drive". I also realised then that I can't be a nurse because of how weak my immune system is.  Day 8 Where do you see yourself in 5 years? I see myself with a YouTube account raising awareness of what it's like to live with a chronic illness. I also see myself regaining the independence I've lost ...

30 days chronic illness challenge made by CFS_zombie.  I'm going to be posting 5 answers to these questions every 5 days.  I hope you like this different method of doing this! 1 of 6  Day 1 Introduce yourself.  Hello I'm Niamh. I'm 14 years old and I have Neuromyelitis Optica. A rare auto immune disease that attacks my nerves in my spinal cord, brain and eyes.  I had my first attack when I was 4 and was diagnosed a year later after a lot of texts and confusion.  I am registered blind and currently use a wheelchair due to steroid damage. I love to do art! I'm taking it as a GCSE. I also really enjoy making cards to send to my other chronically ill friends! Day 2 How havel these illness affected your life? NMO has caused me to be paralysed a few times and is also the reason I'm blind.  They have really changed my life but as they started at such a young age it's normal now.  Not only have they changed my life negatively but...

Dear struggling spoonie! People think having a chronic illness is a matter of miraculously recovering or just die... What about fighting? We have fought battles that most people wouldn't ever be able to fight. Be proud of yourself for being so strong.  The unintelligent people who have never taken the time to ask about your illness who judge you will be the tiniest of fights. Their words can be flicked away where as our usual fights need a army to beat!   You are your own army and your own armour.  I know you can do this you've done it before.  You aren't the only one going through this although you have this illness your family have you and the emotional effects it has on them. It may seem like they don't care but they do. They are just a trying to fight through each day as it comes just like you. There will be expectations like you having fun on your vacation or birthday but the only persons expectations you have to follow are your own. Even opening your eyes, ...

This is a year in my life. These journal entries were combined from medical updates on my Facebook.  January 2015 My NMO pain is really bad. My back feels as though someone is sending electric shocks through my spine. When I have pain like this I can barely do anything. It takes all the strength I have to go anywhere and I miss school. The steroids I started this month are already making my cheeks puffy! February 2015 I travelled to Oxford to see the NMO specialists. The steroids are creating a lot of discomfort and I’m gaining weight. My gabapentin has been increased to 1800mg a day. It’s still not working. I’m on 15 tablets a day now. It’s a rainbow every time I take them. It doesn’t bother me the number of medicines because I know they help, despite the horrific side effects. March 2015 21 tablets a day. I’ve started taking them in a shot glass to make it a bit exciting. My pain is awful. It’s everywhere, all through my spine and my legs. I just get random shootin...

My life with Neuromyelitis Optica Q&A Find out more about how I live my life and what helps me cope.  How do people react to my story? Some people get very curious and try to figure it all out in their head. I get a lot of sympathy, which can be annoying. I understand people are sad when they hear what I've been through and that's why they give me sympathy. There are also people who will treat me as if I’m a young child because they assume I need help when I’m quite independent, and they’ve seen that side of me which can be frustrating. What things do I  struggle with on a daily basis? I struggle with things everyone takes for granted like sitting up, walking up the stairs, reaching for something or even choosing which colour top I’d like to wear that day. I find the fact that I’m colour blind funny because I’ll say, “Is that pink?” and it’s usually something blue or even beige! Another problem I face is deciding when to stop and rest. I can say, “Oh yes I’ll c...