Help Clarky step up to POTS!

October is Dysautonomia awareness month. I’ll be stepping up for POTS to not only raise much needed awareness and funds, but to also support my recovery in the process. Because… #POTSMatters

‘The diagnostic criteria for POTS includes a rise of 30 beats per minute (bpm) in heart rate upon standing. So, we’re taking the power of 30 bpm and turning it into a force for good!’

My goal is to move my body each day, for 30 days, within my current fluctuating capacity. I’ll be documenting this to hold myself accountable, whilst also sharing information on POTS!

Clarky’s story:

Thank you for stopping by! My name is Elyse. I am a 31 year old Special Education/Early Childhood Teacher, Mum of 2 and wife to a Veteran who barracks for the wrong AFL team.

I have frequented doctors and specialist clinics for years, presenting with a variety of strange symptoms. As a busy active Mum, full-time Teacher and Defence Force spouse travelling Australia, many things in my life at this time felt they took precedence over my health. I have never had reason to not trust the word of a Doctor before, so when I was continuously told that my symptoms either didn't exist or were related to anxiety, I truly believed this. I worked hard on my mental health and engaged in therapy and ongoing personal training with the support of a physiotherapist. However, my health continued to deteriorate to the point in which I was no longer able to Teach (my happy place!) due to my symptoms and frequent hospitalisations. It wasn't until one very frightening visit from paramedics did I begin to consider that it may not be mental health causing my symptoms. Although I expressed my concerns to doctors and specialists, my heart rate, chest pain, rapid weight loss, limb weakness and blood pressure continued to not be investigated. My husband continued to be pulled into separate rooms to be advised to seek out mental health services for me, and I continued to be told to download mindfulness apps.

Worried about my deteriorating quality of life and the lack of interest in diagnostics from the Doctors we had encountered, my village and I knew we had to take matters into our own hands. We cut into our savings to access blood tests that were denied to us. We purchased a shower chair so I no longer had to sit on the floor to access daily hygiene. We bought an apple watch and a blood pressure machine to monitor my heart rate and symptoms daily. I utilised my chronic insomnia to power through academic medical journals, determined to piece together the puzzle that so many health professionals were dismissive of.

It wasn't until my best friend suggested Postural Orthostatic Tachycardia Syndrome that everything began to make sense. She recalled one of our long distance voice memos, stating that I had been describing the symptoms of a panic attack, without the panic. This new avenue of research led us to the Australian Pots Foundation webpage in which we were able to utilise diagnostic tools including the Malmo POTS questionnaire and the Active Standing test. Upon my husband completing these tests for me at home, immediately for the first time we were able to identify my Tachycardia upon standing. We took these diagnostic tools to the closest Private hospital, too frightened to return to the public system. Upon completing testing and showcasing some impressive tacychardia upon standing, the Emergency room doctor was able to immediately diagnose me with POTS. Obtaining this diagnosis meant that I was referred to the correct specialists and able to start medication that prevents my heart rate going off the charts even at the slightest head lift. I now have a walker, which has enabled me to leave the house knowing I have a seat on hand! I have increased my fluids and salt intake and I am now able to walk longer distances with compression wear. I am still struggling with a bunch of other fun symptoms, however I am determined to remain hopeful. For not only myself, but for my village who has had my back every step of the way. I’ll be back kicking goals from 50 in no time.*

More information about THE AUSTRALIAN POTS FOUNDATION LTD: Our Mission- A brighter future for those living with POTS, through advocacy, support and research.

The Australian POTS Foundation is committed to improving outcomes for those with POTS by raising funds for improved research, advocacy and support for those living with POTS. The Foundation is currently run entirely by volunteers. Beyond minimal running costs, all funds raised will go directly to improving research, education and support for those with POTS in Australia.

**there is no proof that she ever could kick a goal from 50.