A year in my life. Living with NMO.

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 shooting pains everywhere. I’m getting frustrated with myself because I’m missing so much school. I understand that my health is important but my education is important too. It makes me feel sad because I know I’m not reaching my full potential. But I am proud of myself when I still get good marks even when I’m doing work at home.


April 2015
I’m losing my mind. I’m in so much pain. I don’t understand why they’ve given me a tablet which has intensified everything. I hate steroids! My joints have started clicking constantly and they are getting stiff, which makes it hard to move with my crutches. I attend my blood test. They test EVERYTHING to ensure I’m okay. My best friend and I call them the ‘vampires’. We love to joke about my illness just to lighten the mood. She’s the only one who finds my NMO jokes funny, other people are not so sure.


May 2015
Exam month. I use Braille, large print, modified papers and my teaching assistant is able to scribe and read some of it, which is helpful. School is difficult when your attendance is below 50%. I continue to keep on top of the work because I need
to learn. My steroids aren’t working. I’m saying goodbye to prednisone and hello to hydrocortisone.
I have had several attacks which began when I was four and I was diagnosed
at the age of five. I never fully regained my sight and I have mobility issues, pain, sleep issues and fatigue all of the time. I miss a lot of school but I remain determined to do what I can.


June 2015
I am currently facing the vicious cycle of pain. I met the guide dog trainers at school and they let me walk one around a little. It was awesome. I really think a guide dog would help me. One problem. I can’t use a crutch and walk a dog! My life is a constant battle of trial and error with medication. Each week there’s more colours to add to the rainbow pot of pills! I wish it was a pot of gold!


July 2015
I’m away on holiday for a few days but need to be back for hospital appointments. The pain in my back is quite bad and we’re restricted to what we can do on holiday. I’m all puffy from my steroids but I’m trying to stay distracted and enjoy my time.


August 2015
My feet are swollen and I sleep with them on pillows which is beneficial. I’ve been for another meeting with the guide dog trainers which went really well. I’d love to have a guide dog to help me and for a sense of partnership but I’m just not well enough to do everything that is required.
My dad has hired me a wheelchair. I’m not too happy but
it helps me get around on our holiday. I think of it as being pushed around like a princess haha. I’ve had such a lovely summer having short breaks and being with family. I’m worried about my school attendance this year. I hope it will be more than 50%.


September 2015
A nice birthday present for me. The doctors are decreasing my steroids by 5mg every 4 days until I reach 15mg. It’s making me feel quite ill. I feel like I’m on a boat. I think that the taper is happening a little too quickly.
October 2015
I’m starting physiotherapy to help regain strength in my legs. Fingers crossed it will work! The doctors have replaced the immunosuppressant I’ve been on since the age of 5. My new wheelchair has arrived. It helps me to save my energy for important things like school. My grandparents help me a lot with day time care whilst my parents work. I get work sent to my iPad from the school and I try to do as much of it as I can


October 2015
I’m starting physiotherapy to help regain strength in my legs. Fingers crossed it will work! The doctors have replaced the immunosuppressant I’ve been on since the age of 5. My new wheelchair has arrived. It helps me to save my energy for important things like school. My grandparents help me a lot with day time care whilst my parents work. I get work sent to my iPad from the school and I try to do as much of it as I can.


November 2015
I went for a synacaten test to see if I can come off my steroids as they’re causing lots of damage. The results from my synacaten tests show that my adrenal gland still isn’t working so I’m staying on my steroids. I’m not feeling good and I have not been to school this month.


December 2015
I’ve been to see the specialists in Oxford again and they want to change my medication. I’m a bit worried it’ll make me ill over Christmas. I’m trying really hard to enjoy myself but it makes me so tired! I want to cuddle up in bed. I’m looking back at 2015 and the things I’ve achieved during the year and I’m shocked that I’ve managed to leave my bed.


-By Niamh Wedlake Written for the TMS Association Magazine