Being Okay With Saying No
I've learned to protect my peace by doing what’s best for me despite how someone else may feel, and not feel bad or be hard on myself. Since becoming sick with neuromyelitis optica (NMO) I've learned to accept that what I used to be able to do I no longer can do.
In my 20s I was healthy and young, it’s like I had 28 hours in my days. Today in my late 30’s, having NMO and having to use a wheelchair, some days I have enough energy to get up. Maybe go to physical therapy, run an errand and get back in my non-accessible house before my muscles are too tired to try to walk up the stairs. I also help take care of my nephew, 6, and niece, 5, who are with my family 50/50.
Public places with NMO
There are sooo many times I may be invited to an event but don’t make it because I’m tired. Or I feel leery because it’s in a public place where I’m at everyone’s buttock level in the crowd. In which I’m always on the fence because what if people break out running, I’m terrified of getting trampled over.
Sometimes I get invited to a party, and 2 hours is enough for me if I even have the energy to make it. I don’t like staying to the end sometimes because my bottom starts to hurt from sitting too long or my feet start to swell because I’ve been sitting. Sometimes the bathroom is not accessible for me, especially for a wheelchair user with a straight catheter, it’s not a comfortable or spacious place to do that.
Protecting my peace with NMO
I’ve learned that there are so many changes that have occurred in my life since I started becoming sick in 2012 and became paralyzed in September 2013 due to an NMO attack. I thank God that I'm stronger and continuing to make progress.
However, I’ve learned a lot about myself over the years and if I can’t make it to something I just can’t. I have to protect my peace and do what’s comfortable for me. Everything that Im invited to I may not be able to make it, it’s not personal, I just can’t.
It's not personal
When it comes to friends in my life I’ve learned that I don’t always like talking on the phone 24/7 the way I used to. Sometimes all I want to do is lay in my bed under my heated blanket and watch one of my favorite shows or scroll through apps on my phone. That’s how I like to regroup and calm any nerves and relax my mind.
I had someone take it personal that I don’t call her all the time, however I answer every time she calls me. Sometimes I don’t even get a chance to call them. Again it’s not personal, it’s hard holding a phone wheeling around with wheelchair throughout the house, needing help up and down the stairs of the home I live in and freely hold a phone to talk on.
When my body tells me no
Many may not think about how much more difficult it is for me since I have been in a wheelchair and have NMO. I have had to adjust myself in my life and learned to be okay with saying no, and not feeling bad for others not understanding. Prior to my forced lifestyle I don’t think I ever thought about certain things that I clearly see today because it didn’t pertain to me.
Just because I take a selfie and post it on social media doesn’t mean that I’m okay, up and ready to go here and there. Sometimes one may see me at certain events and say oh well she should be able to come to my event. I’m appreciative for all invitations, however if I can’t make it please once again it’s not personal. I may not have someone to come with me to help, I may have been all ready but my body told me no.
Friendships and chronic illness
I had someone tell me everything they had an issue with in our friendship. To sum it up, I didn’t move the way she expected me to move - that involves me including her. One time I was sick and extremely nauseated to the point I couldn’t get out of the bed, this person had the nerve to get “in her feelings” as she says because I didn’t want to have company. Or wasn’t able to do something for her every time she asks me at the last minute. Didn’t matter that I expressed I’m physically, mentally, and emotionally drained.
I have learned to protect my mental health by knowing it’s okay to say no. If you don’t feel well or you can’t attend an invitation you just can’t. Those who are in your corner will understand and those who don’t just won’t. Having a chronic illness already can have one feeling sad and depressed because our lifestyle is not how it once was, and we don’t need someone making us feel even worse.
Were you misdiagnosed, prior to being diagnosed with NMOSD?