Maisie
Hi, I’m Maisie and I’ve had PoTS symptoms for as long as I can remember but was
only diagnosed in May this year.
PoTS affects me every day. Things such as using the stairs, walking, and going to school can be really hard for me with my symptoms. I’m mainly affected by tachycardia, dizziness, internal tremors, fatigue, pre-syncope, and bad circulation. All my life, my hands and lips have gone blue easily in the cold, and a few years ago I started to get a racing heart rate and become breathless easily.
I used to love gymnastics and constantly being on the trampoline, but my symptoms became too much and I can no longer do these. Instead, I found Musical Theatre and costume making, which are a bit easier on my symptoms and do not make me push myself too much. Although dance and anything physical has become a challenge for me, I adore singing.
In April of last year, my dad was diagnosed with a heart condition and after an episode where I couldn’t feel my legs, I was referred to cardiology. I had my first cardiologist appointment in May, where I had an active stand test. During this test, my heart rate went from 70 bpm lying down to 170 bpm standing and stayed above 130 bpm for 10 minutes. I was then diagnosed with PoTS.
Daily life with PoTS is incredibly hard. However, with the help of things like eating more salt, using a shower chair, and mobility aids when needed, I am learning to live with it. As I write this, I have also just started meditation, which seems to be going well.
School is especially hard for me. I’m often exhausted, dizzy, or just don’t feel well enough to be there, which means my attendance isn’t the best. I have struggled with this for a long time and tend to compare my own attendance to others. I’m slowly learning that everyone is different and it is okay to need breaks. Although I still struggle knowing I can’t always keep up with my friends or do everything I want, I’m learning that accommodations are okay and that things will look a bit different for me.
The main thing I have learnt with PoTS is that you are never alone. It may take a while, but you can always find people who understand, online or in person, and when you do, it makes a huge difference. PoTS can be challenging, lonely, and difficult to deal with, but having the right support and the right aids is so important.
Another important lesson is to never stop pushing for answers. I had been dismissed many times before my diagnosis, but I knew my body best and knew something wasn’t right. For years, I went to the doctors with a heart rate over 160 after simply walking upstairs and was told this was normal.
My biggest advice is to find something you can still do with PoTS. It can be incredibly isolating and can stop you doing some of the things you love. Finding something that can coexist with your PoTS is so important. For me, that is costume making and designing. It’s something I can do sitting down, doesn’t exhaust me too much, and brings me joy, especially on hard days.
I hope PoTS awareness continues to grow so more people can understand it and recognise its impact. I also hope to help spread awareness so people can get diagnosed sooner, because no one deserves to suffer without answers. All I want is to help others feel less alone, like I wish I had during my own journey.
My journey is ever-changing and probably always will be, which is one of the hardest parts of PoTS for me. Some days I feel almost normal, and by the end of the day my symptoms can flare and leave me unable to move. I’m incredibly grateful to PoTS UK for being such a huge support in my journey. I’m also deeply grateful for my family and friends, both online and in person. Having people who want to learn and support you makes all the difference. Thank you so much for reading this.