COVID lockdown with a physical disability - Ehlers Danlos Syndrome

Like 80% of the world right now: New Zealand is in lockdown. We are required by law to stay in our houses, not driving the car to go anywhere except the supermarket, pharmacy, or essential travel like essential service work or necessary medical attention. We're taking it extremely seriously in NZ - we went "hard and early" to stamp out the virus. It's been a month so far, and it's proving to be working. We will be relaxing some of our lockdown rules just next week however most of us will remain in isolation.


Most people are coping with the lockdown by busying themselves in and around their homes. Baking, gardening, daily runs and bike rides. We must stay within a close radius of where we live but really: there's quite a lot you can do if your body doesn't present you with limitation at every turn.

Many people in the chronic illness community have expressed humour, frustration, and drawn attention to the fact that for us: being stuck in or near our homes and only leaving for essential reasons is the norm. This is our life. We don't have the energy or capability for anything more. I can empathise with that, though COVID lockdown is a little way out of my usual norm. I have the privilege of being able to leave the house in normal times to work. I also have the privilege of being able to see my family and some friends on a pretty regular basis, so I don't feel the loneliness that this kind of isolation brings.


While others fret that their "sitting around" will pile on the pounds, and they bound off the couch for an extra Youtube workout, I struggle to empty the dishwasher because of the aggravation to my neck and lower back. While others treat their boredom with spritely household projects, I spend large portions of my day lying on my bed doing exactly nothing, recovering from the small amount of movement I tried to ask my body to do. Avoiding a dose of the strong pain killer waiting in the fridge. While others complain that they can't drive to the beach to go for a walk with some different scenery, I am wishing I could walk a meaningful distance at all.

At the same time as this highlights what other people take for granted, it also means that I must continuously endure reminders throughout this period of lockdown that my body just does not do what others' do. What it used to. I feel like I'm grieving for it all over again. While I grieve and worry for the rest of the world. I have never in my life felt so emotional so much of the time. I know this is how a lot of the world feels right now. Particularly those in the chronic illness community who already have so much weight on their shoulders. Who are possibly at higher risk from the virus, or like me don't really know what will happen if they catch it.


I'd like to extend a hand of support to anyone feeling the way I am at the moment. For once I cannot offer any sage advice or practical ways to get around this pain. The whole world is in pain. All I can say is that it's OK to feel it. It's OK to say it. It's OK to let others know why, even if you know they can't relate. All we can do right now is be safe. Physically but not socially distance. And spread that Aroha because we've never needed it more.

From your Kiwispoonie down under: I love you all dearly. Kei roto i tenei tatou.


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