“We are not all in the same boat. But we are all in the same storm”Damian Barr
It was several weeks ago that Kidney Care UK invited me to write about my experiences so far of the COVID-19 pandemic whilst shielding as a “highly vulnerable” person on home haemodialysis, and I must confess it has been extremely hard to form any kind of coherence that wasn’t just a list of clichéd phrases or distracted ramblings. I am a wordy person and I love to write. Indeed I do feel like I am exploding with half formed ideas, emotions and reflections right now but anytime I attempt to commit them to paper it somehow renders my creative brain to sludge. So here goes an attempt to clarify my thoughts.
Being in isolation living alone, rurally, away from my family and friends with none of the usual external pressures or requirement to rush around for work like normal, is decidedly weird for me. I run my own consultancy business and am also in the process of building a new healthcare social enterprise with some business partners, along with doing a lot of advocacy and voluntary work. After initially feeling rather precarious being self-employed as the world went into meltdown, I have been so lucky to continue just enough client work from home to stay afloat. My gratitude for that knows no bounds as I know I am in a very privileged position to be able to do so and that’s why I am deeply aware that we are far from all in the same boat at the moment, even if weathering the same storm. Frankly, I am lucky to have stayed working with a daily purpose and focus, and have not also had to juggle extra stress of home schooling, significant financial loss or the virus itself.
My “normal” pre-pandemic life consisted of very long working days with lots of travel, made all the more complicated by the need to be back at home overnight at least 5 nights a week to do my haemodialysis. Add to that my keeping fit obsession, social butterfly (ok yes, occasional fear of missing out) tendencies and regular skydiving with my team Fireflies ladies who I typically train with on weekends all through the summer. You get the sum total of a madly busy, frenetic life bursting with variety and fun. I love it and thrive under the pressure; to be honest it is the only way I have been able to make my peace with the two decades I have spent so far on home dialysis…. if I am going to make such vast effort every day to stay alive it is non negotiable to me that I rinse every last second and experience out of life. That attitude is definitely shaped by the fact that I have already had one too many serious health crises - you can never count on things working out tomorrow, next week or next year. So you do them all today or as soon as humanly possible, but you also have to be totally flexible and accepting of the fact that they may not happen at all. Perhaps this is a lesson that many other people will have also learned this year.
Instinctively I have found a way to strike a balance between taking as much control as possible over the things I can manage, like the way I choose to spend my time, my attitude and my positivity, whilst also abandoning myself to the fact that I am really completely out of control and at the mercies of my kidney failure, which could rear it’s ugly head and bite me at any time. You may or may not be a fan of things like mindfulness but I can attest that finding a way to live utterly in the present and not casting your mind to what ifs, buts and maybes is one of the most liberating, calming life skills you can develop.
The 2nd part of Maddy's blog will be out next Tuesday 26 May at 4pm. Please check our blogs page after that time.
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