Hello world of NMO
Around August 2019 changes started happening in my body that were foreign to me. By process of elimination and common logic, I wrote it up to stress, change in seasons, my new hobby for running. By the time I went on holiday in October, my right hand was shaky. Still I persisted that it couldn’t be anything major. That soon changed and 5 days into my travels, I could barely use my right side. When I returned, I did the responsible thing and went to my GP, instantly being referred to a neurologist, and by the next day, I was checked into hospital.
After 5 days of IVs and a barrage of tests, I was diagnosed with NMO. Okay, what is this? This is not catching a cold, something my brain could process. 2 Days at home and I was back in hospital, barely able to walk. Another 5 days, and I was starting to feel better.
Suffice to say, I’ve had 2 relapses…and the light bulb went on. This is serious. It’s debilitating, intrusive, disruptive…and reality has caught up with me.
Relapses are going happen. I have to recognise them for what they are. I have to take my meds (smarty box), find alternate means of controlling the inflammation, be it eating habits, learning not to stress, finding supportive ways in my work environment to deal with bad days. Enlightening people around me so they understand. Doing the most to keep me safe and acknowledging that anything can set it off.
The medication is expensive, and in my case, I’m fighting the medical aid to register the condition as chronic and then I can claim my medication. In the meantime, I pay cash. I’m blessed that I’ve been able to do so until now, but it’s not sustainable.
It’s scary, but I’ve done some research and came to see, that it’s not all doom. Now that I’m taking charge, I feel equipped to face the days ahead, and now I’m reaching out the NMO community. I know I’m not alone.
I’m in the process of getting diagnosed and am scared to death. Thank you for sharing your story. I’m only 54 and thought I would work until I was 70 or beyond. My 1st symptom was losing eyesight in right eye last week. Fast forward through all of the tests, etc. Just waiting on final diagnosis.
Thank you, Be Well