Niamh's NMO

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...