On chronic illness and self-isolation

Wednesday Letter #50

At the beginning of the social distancing measures, I joked that nothing much would change for me. The two-year long arthritis flare-up I’ve been dealing with meant that I wasn’t hanging out with groups of people anyway. Leaving the house only when absolutely necessary had already become my norm. 

When the time came for cocooning, I took the dog and moved a few miles down the road to live with my parents-in-law who were also on the cocoon list. 

Only leaving the house when strictly necessary became not leaving the house at all, except for spending time in the garden. Seeing P was confined to brief chats from the required distance when he came to collect Arwen for her daily walks. 

I have since moved home and am back to being able to go for my usual walk. 

As we spend more time at home, social media has become a place to vent. We are dealing with collective grief and sheer exhaustion. People are working at home. Parents are also parenting and homeschooling, while working. We are all worried. We do not know when this will end. 

Frustration is expected and completely understandable. But it is not lost on those of us who have been told by friends, family, and colleagues “sure staying at home all day must be great!” that people are realising that this is not, in fact, great. Life must go on, but not as we know it. 

Accomodations to allow working from home were, rightfully, made. Yet these accommodations could not be made before now to make these roles accessible for disabled people. Events that cannot happen in person are being held online, without acknowledging the fact that online is the only way many people could attend them in the first place. 

We know that being at home is not as easy as simply being at home. Life continues, but differently. 

We catch up with friends over Zoom. Our group chats are always on the go. We understand that people may not have the brain space for always keeping in touch. All has changed, utterly, but we’re making it work as best we can. 

Will these changes remain when all of this is over? When our lives go back to normal, will we remember that self-isolation will continue to be the norm for some people?

When all of the restrictions are lifted and we get a sense of what life post Covid-19 lockdown looks like, I hope we remember that some of the changes we made will still be necessary for disabled people and chronically ill people. I hope we continue to include people who cannot always meet up in person. 

I hope we come out of this fighting for a fairer and more accessible society. 

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Leaving my cocoon

Wednesday Letter #49

I’ve been slowly reintroducing myself to the world. 

Following six weeks of cocooning, the restrictions were eased to allow those of us who were cocooning to go outside for exercise as long as we stay within 5 km of our homes. A move that I suspect Arwen—the dog—was more excited about than me because it means the number of walks she gets a day has returned to normal. While she is with me at my parents-in-law, P has been the only person able to take her further than the garden. 

The village is within our 5 km limit, so that’s where we walk. I grab the lead and my earphones and off we go. We are still clearly in rural Ireland, but it is slightly less rural than Arwen is used to. Footpaths are still a bit of a novelty for her and she is not a huge fan of the fact that she has to stay on her lead for the entire walk. 

I’ve been noticing things I haven’t before. Like the fact that there is a scrapyard right behind the grotto. The Póg Mo Thóin graffiti on the wall by the post office. The cat and mouse drawing outside the garda station. The Korean War Memorial. The river. I’m almost certain I spotted alpacas and an assortment of other animals behind the gate of someone’s backyard farm. 

The guidelines for the medication I take have changed, so I no longer need to cocoon. Regular old quarantine is enough, which means I can move home soon. And, yes, I am aware that describing quarantine as “regular old” says a lot about how much our lives have changed since all this began. 

As I continue readjusting to being out in the world, I am reminded of how incredibly lucky I am. To be able to cocoon is a privilege. A privilege many people may not have. 

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Learning to grieve: What kind of year has it been

Wednesday Letter #48

An incomplete list of what grief looks like one year on. You can read my previous installments about learning to grieve here, here, here, and here

  • Time is strange. Receiving the phone call telling me that dad died feels like it was only yesterday and as if it were a lifetime ago. I suspect it will always feel like an odd combination of the two. 

  • The ritual of the funeral, memorial service or farewell ceremony will mean more to you than you expect. Dad’s ceremony was a civil one carried out in the funeral home itself and it was incredibly moving to be able to remember him this way. With everything that is going on Covid-19 wise right now, my heart breaks for everyone who is facing a funeral under lockdown and physical distancing conditions. To not be able to have friends and family attend the service makes an already difficult time all the more complicated.

  • You will have no memory of writing or delivering the eulogy. People will tell you that you did well, but you won’t know for sure.

  • When people tell you that grief will mess with your ability to carry out the simplest of tasks, believe them. The best way I can describe it is that your mind will feel hazy.

  • Moving on from grief does not mean “getting over” the person who died. You learn to live alongside the loss, in whatever way works for you.

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Ritual + Burnout

Wednesday Letter #47

When we hear the word ritual most people conjure up religious ceremonies and practises. The link between organised religion and ritual is so embedded in the minds that we fail to consider other ways in which ritual manifests.

It makes sense that the christian ceremonies of baptism, first communion, confirmation, marriage and funerals spring to mind first when they are the rituals you have grown up with. 

But ritual is so much more than that. If you’re familiar with mental health services you’ve likely been encouraged to focus on making routine things more ritualistic. The thought process being that shifting your mindset in this way helps you connect with the present moment. Rituals can be any activity that is performed in a customary way.

Our morning coffee as we stare out the window preparing ourselves for the day ahead. 

The unfurling of our yoga mat as we ready ourselves for class to begin.

The strike of a match as we light our favourite candle before settling down for an evening of reading or binge watching the latest must-watch show. 

Using our evening shower or bath to wash the day away, so we can start afresh tomorrow.

Writing our worries down in a journal in the hope that getting them out of our head will begin to lessen them. 

The five minutes during our lunch break where we do nothing but focus on our breathing.

In these strange times—I still don’t have the words to describe all of this any better—we may find ourselves looking for smaller rituals more frequently than before. Everything has changed, so our normal daily routines are no longer our daily routines. 

We’re all still figuring out how to live with these lockdown restrictions. We’ve adjusted, yes, but that doesn’t mean there are no complications. Take the small peaceful moments where you find them. 

Slow down.

Go easy on yourself. 

Go easy on the people around you. 

Go easy. 

Take care. 

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Alone, together

Wednesday Letter #46

When I left the house the Sunday before last it was the first time I’d been out properly in over a week. I went for a short walk with P and Arwen, the dog, on an isolated rural road where social distancing was easy to do. I tweeted afterwards that my mood improved immediately. 

These are strange times for everyone and the longer this situation lasts the more I worry about the impact it will have on our collective mental health. 

The medication I take to treat my arthritis means that I am immunocompromised, so I was staying indoors as much as possible. I’m lucky because I spend a lot of time at home anyway, so the adjustment to self-quarantine hasn’t been as steep as it might be for other people. Yet my stress induced insomnia returned.

When the lockdown that we’re not calling a lockdown was announced, I moved in with my parents-in-law. We’re all in cocooning mode and P’s job means he is around too many people for me to safely do that at home. 

The furthest I’ll be going for the next however many weeks—probably months—is the back garden, so it helps that the view of the river, surrounding farmland and distant mountains isn’t a bad one. 

I’m craving routine, which isn’t surprising, but given that I’m not great at sticking to routines at the best of times is wishful thinking. Instead I turn to things that comfort me; rolling out my yoga mat and doing some light stretches, rewatching the Joan Didion documentary on Netflix for the twentieth time, the Bon Appétit Youtube channel, reading, trying and failing to write more than a dozen words at a time, long baths, coffee, chocolate, and Tarot. I’m getting better at checking in with friends and family. I hope. 

I’ve heard a few people describe the weirdness a lot, if not all, of us are feeling as being similar to the time between Christmas and New Year when no one knows what day it is. I get that. This past year has felt a lot like that, for me. You learn to adjust. Not because you necessarily want to, but because you’ve got no other option. 

It’s easy to say we’re all in this together. And we are. But we’re also not. Not really. Our experiences of dealing with this pandemic and how it impacts our individual and familial lives are personal and, yes, sometimes communal but it is OK if you are not reacting the same way as everyone else. 

Take care.

Enjoy this newsletter? Forward it to a friend and tell them to subscribe here. Or share it on social media. Come say hello on Instagram or Twitter.

Wednesday Letters is a free newsletter, but if you like what I do and want to show your support you can buy me a coffee here.

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