Niamh's NMO

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...

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...