Niamh's NMO

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 ...

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...