A Dark NMO Future Created by My Mind
The future: sometimes things get better and sometimes they get worse. We have our ups and downs and everything in between. One of my biggest problems is that I worry about what’s to come in my thoughts and dreams. With how bad things may be in the world today, I still can’t help but to wonder what’s the worst to come my way. That may be wrong or weird or whatever you want to call it, but it happens.
I've had a lot of NMO anxiety lately
I’ve talked a lot about fear and anxiety and how they are not good friends of mine but they stick around. Lately they been lurking around and whispering in my head. This may have to do with a delay for my infusion that I was set to get on April Fools Day, but I was fooled, and it was canceled. Then it was moved to the 13th of April and guess what? It was canceled again. Between scheduling issues and appointment mix ups, my next infusion is now pushed again. This infusion is so important, because it's been helping me keep my vision at the level it's been, and keeping NMO’S ugly face hidden.
My greatest fear
So why the fear? Why the anxiety? Why does this article speak to the future? Well, what if my next infusion doesn't work? What if I start to have an attack? What if I lose more vision? What if other issues arise from this? How will I react? Am I mentally prepared? Will my greatest fear come true? All these questions, which have no answers, have been tormenting me more than normal.
I'm not sure how I'd move on
My biggest fear is going fully blind from this disease. It’s the one scenario that has played out the most in my mind, and the one that I’m not sure I could come back from. It also gives me guilt, which is a feeling that makes us human, but it still sucks. I feel guilty because I know that there are people out there who are fully blind and functional, living their best lives. But then there’s me, who feels that I would fail. I’d lose all hope, all sanity, and lose myself.
I don't want things to get worse
This disease has taken so much from me and I’ve seen how much it’s taken from others who experience more aggressive symptoms. I try and be that positive upbeat person when talking about it, but again, I’m only human. I get these moments where I feel sick to my stomach thinking one day I may never be able to see again. I’ve grown attached to the vision I have left. I can still enjoy my favorite movies, see my friends and family, and wake up and see my cat's cute little face sniffing me and waking me up for food. I’d be heartbroken to lose all of that after fighting to get to where I am now.
None of this is easy to say
It’s hard to say all of this out loud. It’s hard for me to tell the ones around me about a very real future that could happen to me if things ever got bad again. The fear eats me up and takes advantage of me when it sees a glimpse of worry on my face. It hit me hard and fast this time; it knows that I don’t know what’s to come in the future, and it uses it against me. I wish I could just shut my brain off, but that would be way too easy.
I just don't know
I don’t know what the future has planned for me. I don’t know if these treatments will continue to do their job. No one does, but I wish I did. The future is a scary thought, and I try my best to focus on the now. It's easier said than done, but I'll still push for it.
What worries you most about the future?
Were you misdiagnosed, prior to being diagnosed with NMOSD?