A Second Chance At Life With POTS

When I first got sick, I lost everything: my income, my degree course and my social life. I struggled to stand up for more than two minutes and I was unable to leave the house by myself. I could not think or speak coherently. I couldn’t even read a book. I slept most of my days away. It was 2015, I was 22 and I was told that I was a medical mystery.

In 2018, three years after the initial onset of my illness, I started a new treatment for my Postural Orthostatic Tachycardia Syndrome (POTS). The results were almost instant. I could stand up again. I could go outside without having to plan every detail of my outing.  I could read without becoming exhausted after just one page. I could do gentle exercises without pushing myself into a flare.  I was symptom-free for the most part; something that I had been dreaming of for years.

Photo by Daria Shevtsova on Pexels.com

I didn’t want to waste any time. I re-applied to university, I booked my honeymoon and I started making plans again. Due to the severity of my illness, I never thought that I would be able to do any of these things. I thought that I would be bedridden or housebound for the rest of my life with no job or career to speak of. I felt old before my time.

This month, I travelled to Iceland and walked 6 miles one day with no ill-effects. I used to be able to walk 12 miles in one day and I’m sure that in time I will get myself back to that level of fitness again. I am also starting my Master’s degree this month, something I never thought that I would be able to do. I am excited to be focusing on my career again after leaving it behind for so long. With each passing day, I feel more like myself again. I am able to make plans with friends and take up hobbies again that I gave up when I first got sick.

The view from the top of Hallgrimskirkja Church ©2018 The Reluctant Spoonie

I am grateful that I was allowed to trail a new treatment and I am now asymptomatic with regards to my POTS. I am aware that very few people who live with chronic illness will get this chance. Right now, I am 25 and I feel like I am 25. My illness is no longer holding me back and I am getting a second chance at life.

Thank you for reading to the end of this post! Our debut ebook ‘The Reluctant Spoonie’s Guide to Living with POTS‘ is out now and contains all the tips and tricks you need to live well with POTS. Get it on Amazon Kindle here. You can also support us and our advocacy work by visiting our Etsy shop.


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