Ashleigh
I’m Ashleigh, I’m 32 years old and a fellow PoTSie – not a club I wanted to be part of, but one that deserves greater awareness.
I’ve recently been diagnosed with PoTS after two years of suffering with unexplained light-headedness while standing, crippling fatigue/weakness, insomnia, breathlessness, brain fog, headaches, gut problems and heat intolerance.
Covid – 19
I had Covid-19 at 38 weeks pregnant and my life changed overnight. I was hospitalised with an irregular ECG but no one got to the bottom of why and I was discharged the next day with blood thinning injections. I had my son two weeks later and over the following two years, felt progressively unwell. Back and forth to the GP and A&E, I was told it was “just anxiety”. After several visits, something came back on an ECG and my doctor called me to say she was referring me to cardiology in light of my symptoms, but that it would be a long wait (thankfully the finding was nothing to worry about).
Lightbulb Moment
In the meantime, I ordered a KardiaMobile device on advice of my doctor and started to do my own research. I came across PoTS online and it was a lightbulb moment; finally, everything made sense. I found a cardiologist that specialises in this condition and got myself referred to him privately. After a heart echo, exercise test and active stand test, I was diagnosed with PoTS. The immense relief brought me to tears. After previous experiences, I was convinced I would be laughed out of the room and told it was all in my head. From there, I was also referred on to other specialists and diagnosed with Generalised Hypermobility Spectrum Disorder, MCAS and Hashimoto’s.
Challenges and Lifestyle Changes
My biggest challenge has been trying to look after my son with all the above to contend with, alongside life-changing birth injuries and PTSD. It’s hard to explain to a toddler that sometimes I just don’t have the energy to do anything other than cuddle on the sofa. I’ve been unable to return to work as a result and this has made me question my sense of identity. It’s really hard to explain to people that this condition has completely altered my life, when from the outside, I look ok. Some days I can just about manage like everyone else, other days I can’t.
In terms of lifestyle changes, Pilates and swimming have helped me and I’m trying to get better at pacing myself. I’ve only experimented with one beta blocker so far and this hasn’t worked for me, but my cardiologist has said there are options, so I’m hopeful I’ll find something.
My Advice
Listen to your body and keep fighting for answers. At the very least, having a correct diagnosis has helped me feel heard.