How do people react to your story?
Some people get very curious and try to gure it all out in their head. I get a lot of sympathy, which can be annoying. ere 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 you 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. Another problem I face is de- ciding when to stop and rest. I can say, "Oh yes I'll come shop- ping," at 9 am, and by 12pm I've changed my mind because it's just not a good day.
How does NMO e ect your mental health?
I feel frustrated and drained most of the time. I get frustrated because my health is deteriorating, or going well and then sud- denly I'm really ill again. It's draining because I feel obliged to try to do something each day, when on some days it's just too much. I get annoyed with myself for letting people down even though I know they'll understand.
What things does your illness prevent you from doing?
I like to think it doesn't prevent me from doing anything. I love to do things people tell me I can not do just to prove that I'm determined... It doesn't always end well. For example walking up 4 ights of stairs to do an assessment I wanted to do
in school... I got to the top and was too tired to reach my full potential.
What helps you cope besides your medication?
Being around people who aren't worrying or asking about my illness. I'm at my happiest when I'm with my best friend be- cause she's accepted everything about me from day one. I also nd Art really relaxing. I love to do my Art in bright colours that I can see, and play about with the shades.
How do you think your peers at school treat you?
School can be challenging because I'm not one of the 'populars' so nobody takes the time to get to know me and know more about my illness. I have some great friends who've known me since I rst got ill and to them I'm just Niamh because they've grown up with me. I've had a lot of hard situations but I always remember that I've had to grow up a lot quicker so my peers aren't being immature - they're just acting their age.
How much pain do you feel?
I get pain everywhere because of the damage in my spinal cord. I take a lot of pain killers to try and help but it only makes me tolerate it, it never goes away... e only thing that helps is sleep but because I'm in pain I can never fall to sleep.
What would you say to other people with NMO?
I would tell others ghting this illness to continue ghting. Staying inside and blocking everyone out isn't making your life any better. You have to just accept it and remember that what they have now they may not have in a year's time, so embrace it. Embrace the fact one eye still works a little or that you can move your arms and talk.
What would you say to anyone reading this who isn't su ering with NMO?
Don't assume everyone's story is the same. Ask questions, do your research and take your time to understand before making any judgments. You may think people don't want to talk about their illness but at some point they have to. You need to begin that path for them.
Do you think you have been treated well by your health services?
I think the help I've received has been amazing. I do think that as I'm a chi=ld I've been prioritised more, which is silly. ey think about the future of a child more than a adult - that's how I feel. I've been given the best doctors you can get for FREE. ere are so many people in other countries who cannot a ord treatment so I appreciate the help I'm given.
Do you have anyone who inspires you?
I watch a YouTuber who is visually impaired, and makes videos about her life being blind. She shows that although she has no sight she can still do what others can - she just does them di erently. She inspires me not to be de ned by my illness.
