I can’t do anything about it.
I can’t fix it.
I can’t make it go away.
I don’t have clear answers.
All I can do is read, research and be here for the hugs, tears, disappointment, and anger.
POTS is such a frustrating disorder. It impacts everyone differently. Symptoms, impact of symptoms…
Have you heard of it? I’m guessing probably if you’ve found this blog.
Postural Orthostatic Tachycardia Syndrome.
It’s a central nervous system disorder; it impacts blood circulation and circulation in the body is what makes it work. Both our teens have been diagnosed this year. It’s a relief that my research and what I thought was going on, is. But it’s so disheartening that this is what they have to deal with now.
Our son passes out frequently with five or more almost pass outs per day that he catches in time. He struggles to play sports and be active. The brain fog and fatigue he feels impacts his day to day.
Our daughter deals with daily brain fog, exhaustion, nausea, dizziness, and near pass outs. She struggles to play sports and exercise, swimming triggers an episode every time, but its one of her favorite pass times. When she gets excited it triggers her entire nervous system and takes something fun and exciting and she ends up hugging a toilet. At almost fifteen that is not where she wants to be.
As their mom, it’s so hard to watch. To encourage through the hard. To acknowledge this royally sucks, but also, we must learn how to continue living and find joy in life. Teaching their friends what’s going on for them, how they can support their friend and how to be sensitive about it.
So much is trial and error.
So much is trying again the next day.
POTS doesn’t come with a roadmap. There isn’t a clear fix, a straight line, or a guaranteed outcome.
Some days feel manageable. Some days feel impossible. And most days fall somewhere in between.
So we keep going.
We keep learning.
We keep adjusting.
We keep showing up.
Not because it’s easy. Not because it’s fair. But because they deserve a life that still holds joy…even in the middle of all this.
And if you’re in this too, feeling just as overwhelmed and unsure…you’re not alone in it.
We’re all just doing the best we can, one day at a time.
You’re not alone.
The Honest Middle
Chronic Illness
The Quiet Letdown After Another Appointment
Another deep breath… another medication to look up. Another hug with my kids, while they are angry that their body has betrayed them.
I’m so tired. So tired of telling them we will get through it. Telling them that yes this sucks, yes this is unfair, but you got this, I know you can do it.
I hear children are so resilient all the time. And they are, but sometimes they just don’t want to be. Sometimes, my kids want to swim without feeling nauseous and like they are going to faint. Sometimes, my kids want to play soccer or basketball without having to sit down so they don’t pass out again. Sometimes, my kids want to just feel normal…whatever normal actually looks like. They don’t want to always have a water bottle, salt packets and electrolytes, pulse ox in their bag.
I hate that I have to check with them before they leave, that they have everything they may end up needing. Why don’t they just get to leave?
It feels so desperately unfair.
I am that mom… the mom that has walked a mile in their shoes. I deal with chronic illness and health conditions too. Navigating my own health has been a long journey since I was 13. And now I am continuing with mine, and now both our young teens as well. The fatigue is real. So few genuinely understand. We are fortunate that we do have some that try to understand and are willing to learn about what we as a family go through on the daily.
Today is a day I just want to curl up in a corner with 5 fuzzy blankets, tea and read a book to disappear into another world. I can’t fix this for my kids. We just got back from one of their specialists and just like always its another thing to think over. Another thing to weigh the pros and cons.
So if you’re feeling like you want to tap out… I see you…I hear you. You’re not alone and its okay to feel very very done. But then wake up and do it all again.
You’re Seen.
The Honest Middle
The Honest Middle 