Zoe

I was taken in an ambulance with a heart rate of 230bpm and was given an SVT diagnosis immediately. After two heart ablations in as many years, my symptoms were not improving – in fact, they were getting worse. I was given a PoTS diagnosis several years later, by a cardiologist and given a leaflet from the PoTS UK website. That was all the help I was given.

Contact with a specialist

I had begun passing out regularly and my mum was becoming more desperate. She got into contact with a specialist in London who agreed to take me on as an NHS patient. He referred me for many tests, including the tilt table. Again, I was told I had PoTS, but this time was given medication. I’ve tried many medications since, and nothing seems to alleviate my symptoms. My resting heart rate is around 100bpm anyway (due to the SVT), so having PoTS as well isn’t ideal.

I then received an EDS diagnosis and a gluten-intolerant diagnosis too. Both of which are common with PoTS – or so I’ve been told. I’ve had physio, medication, CBT – nothing seems to help. But this is my life now. And although it’s been 10 years into my journey, I’m still not close to acceptance. I’m not sure I ever will be. And that’s okay. I grieve the loss of the life I once had. And that’s okay. I yearn for my symptoms to get better with age. And that’s okay. Any feelings you have throughout your journey are valid.

Oh, and be prepared for many years of people telling you that Pilates or Yoga is a miracle cure!

My symptoms deteriorated rapidly

I never thought they’d be any positives from my diagnosis, but I was wrong. When I was 23, my symptoms deteriorated rapidly. So much so that I had to give up my vocation in childcare. I was bedbound for months and felt like there was no escape from my own personal hell. I started writing down my feelings and filming videos on better days. I started my own YouTube channel and blog. I started my own young adult book subscription box from my bed. I started my own small jewellery company based on books and musicals. I then became a freelancer for a gluten-free and wedding company. I’ve even won awards for my blog and YouTube channel.

So while PoTS has taken away so much from my “normal” life, it’s also helped me to reach for the dreams I didn’t realise I had. I loved reading and writing, and sharing my thoughts with the world. But that isn’t something I ever thought I could make a job from – but now I do it all from the comfort of my bed!

We push ourselves until we burn out

Something I’ve learned over the years is how often we push ourselves until we burn out. People can’t often see how we’re feeling, so we pretend it isn’t happening. You push, and you push, and then you crash. I did this to my body so many times and would end up in bed for weeks at a time. If your body is giving you warning signs to stop, please listen.

PoTS symptoms can be mild, or all-consuming. All of your experiences are valid. I had times when I was 18 where I’d be frustrated if I felt dizzy a few times a week. Nowadays, I’d be grateful to have such mild symptoms! But at the time, it felt like the end of the world. And that’s okay too.

Give yourself time to process what’s happening. Read books. Join groups. Even do charity events (I’ve raised over £2000!). It’s important to understand that although PoTS may be a huge part of you, you are more than just PoTS. You are more than your diagnosis. And however many doors your diagnosis closes, new ones will open. Ones you may not realise have ever been available to you.

Whether you’re reading this in your office at work, with your legs propped up on your wall, or while checking your heart rate for the 10th time today, just know that you’re doing amazing. We all are. We’re PoTS warriors. And I’m proud to be one.