seizurelikeepisodes

I’m a very quiet and shy person, I have a hard time opening up to people and telling them how I’m feeling, even my family. Sometimes when I open up to my mom, she says things like she knows everything about me and my condition. It’s really frustrating because when I say how I’m feeling it gets thrown out of preparation or does t get recognized at all. I once told her that I was in pain, but she couldn’t see it so she didn’t act like it was a big deal....And no I don’t want “attention” I just want to be validated and understood. I just don’t feel like they really understand what I’m going through because I suppress it and try to hide it, only showing my smiling face around them and telling them I’m just tired. I know this isn’t healthy but it seems better than getting lectured all the time. But who knows me best? Me living with it? Or her k owing everything? 🤔
#Dysautonomia #LivingWithPOTS #POTSLife #PosturalOrthostaticTachycardiaSyndrome #seizurelikeepisodes #Pain

Marching band season is approaching fast. For reasons I won’t discuss, we had to get a new band director in the middle of last semester. It has been really hard on the band over the past few months. Thankfully we are getting a new director and he will be here for band camp. However, he doesn’t know about my health problems. The only reason I was able to do marching band last year was because the band director knew about it and we were able to work around it.
I love marching band and I don’t want to give it up. I don’t know how to explain what I will need from the band director in order to participate. I don’t want it to seem like I am trying to get out of doing somethings but at the same time if I need to then I need to.

My old band director saw me get sick. I was in marching band when I had my first seizure like episode. And when I started having to sit out of class bc I felt so awful. That led to more of an understanding because he saw me get sick and start fading. I had to lean on my band family and director to make it through marching band season last year. He was the only teacher who really had an understanding of what was going on, none of my other teachers knew or could relate like he could.

I don’t know how I’m going to explain things to the new director. I know he won’t tell me I can’t do marching band just because I have health problems. My entire band family knows about my health problems and they are so supportive. I just need some advice.

#LivingWithPOTS
#PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #Advice #help #seizurelikeepisodes #Pain

1. I will listen to my body as much as possible
2. I will be open and honest about my feelings with people
3. I will not let others decide what I can and cannot push through
4. I will not let others decide how I feel
5. I will not do what others want me to do if I’m not feeling up to it.
6. I will not apologize for my illness
7. I will not hate myself or put myself down for my illness.
8. I will try my best to move forward and find more answers.

I will try to make a video explaining each one of these on my YouTube channel. Go subscribe! comment that you came from the Mighty! 🥳

www.youtube.com/channel/UChE4g86FvOFFCWXyUyZTtqQ

#Dysautonomia #LivingWithPOTS #PosturalOrthostaticTachycardiaSyndrome #potssyndrome #potsiestrong #Potsie #Pain #seizurelikeepisodes