Katy

However they continued. These seemingly random black outs became more frequent and accompanied by seizures, muscle tremors and sometimes even heart pauses. I had always been fit, active and ‘sporty’ but I started to become really ill. I was suffering from extreme fatigue and constantly in and out of hospital with numerous other symptoms. 

Over the following 3 years, my condition continued to worsen. I struggled to keep up my gym routine (at the time I did CrossFit and Olympic Weightlifting) and I was eventually told I had to stop exercising altogether. This was a huge blow for me and I ended up gaining a lot of weight and losing a lot of confidence. I started to struggle with work, day to day life and my mental health started to suffer too.

Numerous different consultants

Nothing was making me better. I saw numerous different consultants, lost count of the number of tests, scans and medications I tried. I was told it could’ve been anything from anxiety to Parkinson’s disease. I had lost faith in ever finding out what was wrong with me and worst of all, I had lost faith in me and who I was. 

Improving my fitness

I am not sure when I decided I was going to try and change how I was feeling but I did. I had to try and control what was within my control. Having always been a keen runner, I decided I was going to try and get my running mojo back. I started by walking the dog – a lot – then I started running to the beach, about 500m from my house. Then it was a little further, then further more until I was running 3k, then 5k. 

In late 2018, whilst laying in bed with a huge PoTS flare up, I saw a post on social media about an Ironman event in Weymouth and knew it was something I wanted to do. At this point not only was I really poorly, I had also never done a triathlon (although I always wanted to try one). I thought my local sprint race would be a good start. 

It gave me something to focus on, as well as a reason to keep trying to improve my fitness. As I started to train more, eat better and get fitter, I realised that my symptoms were getting slightly better. Everyday tasks also seemed to get slightly easier. My blackouts and seizures started to get further apart and whilst I was physically tired from exercising, it wasn’t always the deep fatigue that I had been suffering with. 

In May 2019, I finished my first triathlon (that small local sprint I had signed up to the year before)! I was elated and I loved every minute of it! It was such a huge achievement for me and gave me both a physical and mental boost. I loved the training and the race so much, I immediately signed up to another. 

Diagnosis

Later that year, after 5 years of battling, I was referred to Dr Gall and received a diagnosis of PoTS and EDS. He was quick to get me on the relevant medication, which started to make a real difference. We talked about my triathlon and to my surprise he was hugely in favour of it. I remember joking with him that I had started to find I was actually good at cycling and it must be because I was sat down! To which he stoically replied ‘of course, that’s exactly why’! 

Having been given the go ahead from Dr Gall to keep going with my triathlon training, I found a coach and triathlon team. I remember telling my coach about PoTS and my crazy idea to do the Weymouth half Ironman and she was massively supportive. We started working together and whilst it hasn’t been without its hiccups (blacking out on a run and breaking my ankle, a number of flare ups and missed training sessions due to symptoms) the results have been unbelievable and one month ago I crossed the finish line of the Weymouth half Ironman! 

Start of an epic journey

I train 10-14 hours a week across the three disciplines, consume about 3000mg of electrolytes a day and I have changed my diet to be mainly plant based. I now also work with a nutritionist who through diet, has helped me manage my fatigue better on a daily basis as well as improve and fuel my training. The change in diet combined with the training, has had a huge effect in helping reduce my symptoms even further. 

For me, this has been an epic journey but it is only the start. As I write this, I am planning my races for next year and whilst PoTS isn’t recognised by Para-sport, I will continue to race alongside fully able-bodied athletes, in the hope to one day qualify for the Team GB Age Group team.  

I hope that my story can inspire other PoTS and chronic illness sufferers that a diagnosis is just the beginning. That with the resilience suffering with a chronic illness brings, absolutely anything is possible.