The Emotional Rollercoaster of NMO
Here we go again. The buildup of emotions is eating me alive. Perhaps it's the season for it, I don't know. What I do know is, I often question how much longer I can go on like this.
I'm still grieving
I'm not over it. Simple as that. I have NMOSD and 2 years later I'm still grieving the "old" version of myself. I can't tell you how many times I just sit off in a fog of imaginary dreams thinking about what used to be and how I wish none of this would have ever happened. I imagine myself being, ya know, normal. If there's such a thing anyway. Why can't I just get over it? Well, let's see. My entire life has changed overnight. So has the quality of it. I'm expected to be "normal" in my new disabled world. I don't have a second to slow down because, life still has to go on. I could go on forever. So yeah, it's 2 years later and I am in fact still grieving.
The blame games
They always say, "what goes up, must come down." With that being said, I can't help but to wonder, "did I do this to myself?". Science says no but I the amount of time I spend thinking about what I could have done wrong in my life to cause such an infliction on myself is utterly ridiculous. I feel like this is some type of karma except I don't know what I'm being punished for. I feel guilty when I can't do things to full capacity. I feel guilty when I have to cancel plans. I feel guilty when I simply cannot be the person, I think my family and friends need me to be.
I know I'm disabled but do you really have to remind me?
Constantly, I'm reminded what I can't do by everyone around me. I don't even think they realize they're doing it or how much it hurts me. I've literally had to go and hide and cry out the overload of emotions that come from feeling like I'm not enough. Nothing has changed. I am still Shekita Green, just with NMOSD. Somehow, this title has left me in a position to constantly fight for my dignity. I am not less than just because I am disabled. Don't treat me as such. Unfortunately, this type of treatment leads to trauma. I'm not naturally the type of person to ask anyone for anything such as help however now, I'm left with no choice. I find that when I want to do something, make decisions, or ask for something, countless times I've been told no or wait. Can you imagine?
No such thing as ME time
With having a disability, I realize it isn't always the safest to be alone. In my case, someone is with me 24/7 and I'm losing my mind. It's already a lot to deal with considering that I can't leave the house for some space because I can't drive. I can't even get space inside of the house. Not even 5 minutes and someone is right there. If any given point, I decide to use my walker then I really under a microscope. I just want some time to myself. Peace and quiet.
Life does in fact go on
I'm a mess and I know it, but you know what? That's A-OK. As we go through the up and down emotional roller-coaster associated with living with NMOSD, we must know that this isn't for the weak. The catch is. we're handling it. Better than we could have ever imagined. I can't tell you the how's or the whys, but I can tell you, "WE ARE WARRIORS"! Even if sometimes, we just need to vent a little.
Were you misdiagnosed, prior to being diagnosed with NMOSD?