Donate to help people suffering POTS

Hi! My name is Sophie Bussell and I am one of the hundreds of thousands of people living with POTS in Australia and around the world. POTS (Postural Orthostatic Tachycardia Syndrome) is like being allergic to gravity. The autonomic nervous system, which controls all the automatic things in our body like breathing, heart rate and digestion, doesn’t work properly. This autonomic dysfunction also known as dysautonomia, means my heart beats quicker to try and keep my blood flowing around my body effectively. So something as simple as standing up or walking around each day, is the equivalent to running a marathon. However, despite the body trying its best, it can’t always fix this problem efficiently, which often leaves areas like the head, heart and hands without enough blood flow. This then causes a wide range of symptoms like dizziness, fatigue and nausea, which make life very difficult. Imagine trying to go to work after a late-night party, you’re hungover, the coffee machine has broken and when you get to work, late, you realise that everyone is going for a run to get some exercise and you didn’t get the memo to wear appropriate clothing. That, is what it’s like living with POTS every day.

My journey with POTS started in 2020 when I collapsed after running a 3km cross country race. That week I ended up in hospital 3 times with no explanation for what was wrong. 5 months later I was diagnosed with POTS and started my daily management towards recovery. This included drinking 2.5L’s of water, eating 5g of salt, wearing compression stockings, resting and completing an exercise program every day. I had just turned 14 and like any teenager, dealing with a chronic health condition was certainly not on my list of things to do!

After 12 months of focusing solely on managing my health, I was officially in remission, which was a huge achievement that I hoped would last. Unfortunately, after further setbacks including contracting Covid, then the flu and also sustaining a concussion, my remission was over and I again had to manage my POTS symptoms daily. Since then, I have gone through countless ups and downs and developed Chronic Fatigue Syndrome (CFS). Yet I have also managed to travel overseas and maintain an exercise program with an amazing physio. I have come to accept living with POTS and the crazy amount of symptoms it brings. Learning how to live with an invisible illness has changed my life and both made me stronger and taught me to appreciate the small things in life and to be grateful for what you have. As they say, you never know what you’ve got until it’s gone. I didn’t realise how true this was until so many things that I loved felt like they’d been taken away from me by this disability. Now, I like to focus on the positives and on trying my best to manage my health whilst living my life to the fullest. However, it has taken me several years to get to this point and I still struggle with my health every day. I know what it feels like to wake up feeling sick every morning and I have experienced the uncertainty of living with a health condition that’s unpredictable and changes constantly. Sometimes I’m sure my body just wants to make my life difficult! Luckily I have incredible friends, family and doctors that have helped me along the way and I wouldn’t be where I am today without them.

Although I know a lot about POTS there is always more I learn and I know there are many people out there that haven’t even heard of it. POTS is an invisible illness, so it can be hard for people to know or understand because they can’t see it as clearly as if someone had a broken arm or leg, which is why raising awareness is so important. I understand what it’s like to live with this condition and knowing how hard it is means I want to support others with POTS to live their lives and to help those who are looking for answers, get a diagnosis for their debilitating symptoms.

October is dysautonomia awareness month with the 25th October being recognised internationally as POTS awareness day. During this month I will be doing a challenge to raise money and awareness by focusing on 30 beats per minute (bpm), which is the diagnostic criteria for POTS.

• I am aiming to exercise for 30 mins a day

• and swim a total of 3,000 metres over the month.

This may not seem like a lot for the average person, but it is something I have been working up to for a long time, as my POTS and CFS symptoms make it difficult to do any form of physical exertion.

I am proud to be supporting the Australian POTS Foundation who are committed to providing ‘a brighter future for those living with POTS, through advocacy, support and research’. They’re a not-for-profit organisation which is currently run entirely by volunteers and beyond minimal running costs, all funds raised will go directly to improving research, education and support for those with POTS in Australia.

You can find out more information about POTS, the Foundation and the 30bpm challenge on their website at https://potsfoundation.org.au/.

Thank you so much in advance for your contribution to this cause, it really means a lot to me and to so many other POTS sufferers. Every donation will help, even if it’s only a few dollars.

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Help change people’s lives and make this invisible illness, visible!