Going Out With Friends
At just 19, I was diagnosed with NMO, which as I’m sure many of us know are the prime party years. These are the years where you go to college and you let your hair down. You join sororities. You go to parties.
I definitely would consider myself a social butterfly. I think I definitely enjoy the companionship of other people when I went to the hospital, I simply expected all of those people I consider me a friend to show up, and of course, through the process of having a rare diagnosis that didn’t happen because unfortunately, the world still turns for people that are going through what a rare disease patient goes through. As much as my friend said that they loved and cared about me things like going to the club while I was in the emergency room for more important.
For that reason, I was always deterred from going out just because I didn’t know how my body can handle it.
After my attack when I was learning to walk again, and I was blown up from steroids, I tried to put that old Avery back on the party, girl the one always willing to take shots at the bar.
Partying with NMO
Part of being young is making dumb decisions and that’s how we learn in life. I made the mistake of trusting the people around me to take care of me if anything went wrong because I’m on medication and alcohol affected me differently. I didn’t necessarily put myself in the best situation.
It’s unfortunate that multiple situations happen like that with old “friends” so I had to have a talk with myself at just 21.
I had to make myself understand that, although partying is fine, I have a different body, and I have to look out for myself because at the end of the day, there’s not many people you can dress to take care of you when an episode occurs.
Learning my limits with NMO
Things like going out to bars barhopping going to the club and even going on dates all became obsolete. My goal was to get better be better and do better to use this bear diagnosis as an advantage to further myself and my purpose in life.
Almost 100 percent of 21 year olds don’t have that mindset so that left me with a very small circle. I realized that not everything had to be a rager. I’d love to hear a survey of another 21 year old saying that.
That’s the prime time for testing those young limits and partying hard my priority shifted being young and I had to learn my limits and when I was going out.
With so many incidents that occurred I have a plan every time I go out. I always locate the closest hospital. I always make sure at least four people have my location. I update those close to me to make sure that they know I’m OK and I never go out with somebody that doesn’t know the full circumstances of my disease. I’ve had to learn to weed those people out.
Listen to your body
The biggest advice I would give is to know your body. I know your limits. No party, no drink, and no friend that prefers those things over you. And they should never be considered over yourself.
Always put yourself first have a plan and if you were going to partake in alcohol, make sure that it is low sugar and you alternate with water.
Life is possible with a rare disease you just need to learn to work around it.
Were you misdiagnosed, prior to being diagnosed with NMOSD?