We were drowning. In August 2016, Cass, age 5, was diagnosed with Type 1 Diabetes. We didn’t think it would be a big deal because we had plenty of experience with this sort of thing.
I was diagnosed with EDS (Ehlers-Danlos Syndrome), a heritable connective tissue disorder, when I was 19, but I’ve had it – and its pervasive, debilitating symptoms and associated conditions – for as long as I can remember. I made it through school, university and the first years of working life despite the heavy impact of EDS and its associated problems – MCAS, POTS, Raynaud’s, migraine, depression, anxiety and OCD.
Chris has his fair share of health-related challenges. A motorbike accident left him with the persisting after-effects of a traumatic brain injury that include debilitating headaches, tremors, episodic fascial paralysis, chronic widespread nerve pain as well as the typical lingering cluster of emotional, cognitive and physical problems. He has Asperger Syndrome which added to the complexity of adapting to life with chronic health issues.
Cass inherited EDS and has spent all of her life battling its persistent systemic symptoms.
So we thought that Type 1 Diabetes wouldn’t be a big deal.
But it was.
It took months to master the learning curve of carb counting, daily insulin and glucose level management. It took a year for us to realise that with the complications caused by her EDS – we weren’t ever going to fully master diabetes management – we could only do our best and then hope for the best.
Twenty seventeen found us exhausted, sleep deprived, overwhelmed and stuck in a rut of trying the same things and hoping for a better outcome. Work stalled. Most people’s resumes are filled with their work experience, education, skills and a catchy personal profile. Ours have holes as big as Mars. Whilst friends, peers and colleagues worked their way up the corporate ladder, we have been dealing with chronic illness the vast majority of the time. It hasn’t been easy, but we did develop some skills.
We learned to be resourceful. We learned how not to crack under extreme pressure. We learned how to prioritize and down-size our daily responsibilities. We gained empathy, patience and compassion and a knack for finding the quirky things that allowed us to squeeze more life out of every day.
We realised that we were tired of living life in beige. Sick of the repetition of just making it through the day in one piece. We wanted life to be more meaningful, so we decided to start solving problems one at a time, finding long-term solutions that will make each tomorrow a little better than today.
Life can be challenging, but there’s always something you can do with what you have to make every day a better day. As long as you’re willing to take a different approach to life and embrace the space outside your comfort zone.
Chris came up with the name ‘Ergohacks’. It’s a great way of saying – ‘Go find creative solutions’.
Ergo – Latin word meaning ‘therefore’ / ‘for that reason’ PLUS
‘Hacks’ – cope/manage, …a quick or inelegant solution to a particular problem, a strategy or technique for managing one’s time or activities more efficiently.