We were drowning. In August 2016, Cass, age 5, was diagnosed with Type 1 Diabetes. The next day was our thirteenth wedding anniversary and we celebrated it sitting in a hospital room eating sandwiches from the hospital cafeteria whilst we watched our daughter getting better. 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 could write a book about how traumatic life with EDS has been, but I’d prefer not to because that would be looking back and I’d rather live life looking forward. I made it through school, university and the first years of working and then family life with severe asthma, dislocating joints, chronic migraine, fainting spells, seizures, insomnia, depression, anxiety, Raynaud’s with chill blains and ulcers covering my hands and feet constantly slowing me down.
Chris has had his fair share of health-related challenges as well. He has his own brand of migraine with aura and its related symptoms. A motorbike accident left him with the persisting after-effects of a traumatic brain injury – including headaches and a tremor, as well as chronic back, knee and leg pain. He’s been one of the unlucky few to experience recurrent episodes of Bell’s Palsy. He also has Asperger Syndrome.
Cass inherited EDS. She dislocated her shoulder for the first time when she was 4 days old. She spent the first year of her life crying as her muscles took their time to grow strong enough to keep her bones in place. Her lungs took their time to mature, causing frequent breathing problems and chronic respiratory infections for the first four years of her life. Her digestive tract had the typical EDS-induced symptoms – she couldn’t tolerate a long lists of foods, including gluten and lactose, and experienced acid-reflux so severe her esophagus was bleeding and rarely had time to heal between flare ups. She still struggles with chronic abdominal pain, digestive symptoms, food sensitivity and absorption issues.
So we thought that Type 1 Diabetes wouldn’t be a big deal. But it was. It took months to master the massive learning curve that comes with carb counting, daily insulin and glucose level management.
It didn’t help that Cass’ EDS threw a huge spanner in the wheels. Her super-elastic skin and underlying stretchy connective tissue made insulin administration a nightmare. Insulin injections were the worst – she didn’t seem to ever get a predictable amount – but switching to an insulin pump hasn’t been hassle free either. Her cannulas that deliver her insulin move as her body stretches and this causes blockages, variable insulin administration, variable absorption and we have a high rate of cannula failure.
Her digestive issues impact severely on our ability to control her glucose levels as what she eats digests at vastly different rates. The most frightening aspect has been that just two Glucotabs can take up to an hour to digest – making it impossible to effectively treat hypoglycemia every time. EDS and Type 1 Diabetes is so rare that we’ve not met anyone – either on-line or in person, medical or otherwise, that has any experience with how to juggle Diabetes when EDS acts like a series of rogue asteroids constantly knocking off the balance.
Twenty seventeen found us exhausted, sleep deprived and stuck in a rut. We’ve been so tired, so worn out, so worried and so stressed by this unrelenting task of keeping her alive, that life had become all about getting through the next hour and then the hour after that without falling over.
Being the Type-A parents that we are, keeping her alive one day at a time wasn’t enough, we were committed to keeping her alive and thriving until she turned 93. At least. Type 1 Diabetes shortens lifespans and comes with some nasty long-term complications for which the risk increases on par with blood glucose levels. So we set out to accomplish what felt like the impossible whilst also dealing with everything else we have on our plates.
Work stalled again. Most people’s resumes are filled with their work experience, education, skills and catchy personal profile. Our 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, but we did developed some skills. Different skills.
Severe injuries and chronic illness are severely debilitating. It plunged us into unemployment first, then debt and despair. But we learned a lot about how to recover from a traumatic brain injury. We learned how to survive years of chronic migraine. We learned how to do a set change in under five minutes. We learned what it was like when you couldn’t take breathing for granted. We learned how to relocate dislocated joints. We learned the meaning of the term severe pain. We gained empathy, patience and compassion. We learned how not to crack under extreme pressure. We learned how to prioritize and down-size our daily responsibilities.
We gained a knack for finding cool stuff that squeezed more out of every day. We also learned that we were smart, resourceful people who weren’t ready to give up on the life we’ve always wanted to lead.
So meet Chris, Lily and Cass. Based near Stonehenge, we work from a modest home office (i.e. the living room). Our complex health needs, passion for technology, games and gadgets combined with our desire to live a simple, ecological, ethical life sparked the idea for a website focused on escaping the daily grind. A website focused on finding solutions. And sharing them. Join our journey, we hope it’s going to be a spectacular ride.
Chris came up with the name ‘Ergohacks’ quite some time ago. It’s a simple thing really in the definition of two words:
Ergo – Latin word meaning ‘therefore’ / ‘for that reason’ + ‘Hacks’ – cope/manage, gain unauthorized access to data in a system, code that provide a quick or inelegant solution to a particular problem, a strategy or technique for managing one’s time or activities more efficiently.
What does Ergohacks mean to us then?
A combination of the above. Obviously. We think that life is challenging, that often we do what’s easy instead of doing what we’d like to do. We make sensible choices, we pursue job security over job satisfaction. We create a false sense of security.
We started off making sensible choices. We went to good schools, we went to university to make us more employable, we worked 100+ hour weeks and had lunch at our desks. We saved. We went to the gym. We did yoga and meditation. Despite all these sensible choices, life didn’t go as well as we’d planned because of factors beyond our control. So we’ve decided to take a different approach to life. To think outside the box. To live outside the box. To start solving our problems by coming up with different ways of hacking life to a more meaningful future.
We’re tired of beige. So we’ve started splashing some colour by doing things differently. And most importantly, trying new things our old sensible selves would’ve discarded as wistful wishful thinking. Let’s see where that takes us.