Living with disability

This year, 4.5yrs into having POTS, an invisible disability that leaves one with little support, and needs the kind of research support and funding cancer gets, most of my cycling will be done laying at a 30 degree angle on a pilates type sliding bench machine called the Total Gym Fit.

Unfortunately it doesn’t measure distance, but from my lifetime of cycling more kms than driving, it takes approx 3 mins on average to ride 1km.

So every 3 mins = 1km.

Cycling in an upright position, especially as the days are warmer causes an increase in my heart rate that worsens POTS symptoms. Also Melbourne roads are not particularly cycle friendly anymore…. Cars are going through an aggressive patch.

This is my 8th year of fundraising for research into children’s cancers. And potentially the one where I bring the total I have raised in 8 years to $10,000, thanks to incredibly generous people like yourself, who are reading this post.

Standing up with POTS takes 3 times more energy than for someone without.

Pedalling laying down increases my HR, but less than cleaning my teeth, getting dressed, showering, standing up anywhere for 2 minutes.

This October I will forfeit any unnecessary exertion (like showering too often), to commit to using my energy for something that gives to others. Don’t worry, this illness/disability with no treatment or cure, has given me a lot of practice missing out on basic activitiesof daily living! I am also very fortunate to not have BO 😂

It also benefits me to have an external motivation to use my leg muscles. This fundraiser hold me accountable. What is tricky is that Exercise for me? Is actually not healthy, so I need to not compete against myself and set regular and achievable goals. On days where I do not leave home to go to an appointment and have someone who is able to take Stormie the 3yr old JRT x Tenterfield Terrier out for exercise, I can spend more time pedalling. But days where I have other physically demanding commitments, I need to be very mindful.

Any support is appreciated more than I can express. If you live near me and are able to take Storms for a walk (and u pass my walking a JRT test), that in itself is a donation for me.

Thank you for reading, and for many of you, supporting me for years.

Kerrie 💜