Welcome to our world

It’s pretty scary out there, isn’t it?

Get through this, there are no second chances. I’m listening to some of Placebo’s music right now, which seems fitting.

It’s an ironic world out there in the chronic illness community right now.

There is a lot of anger and frustration.  Feelings that stem from it taking a global pandemic for people to confront the reality of disabled living for our community. Anger at the world suddenly being able to make things more accessible, remotely, when it affects able-bodied people. Anger at able-bodied people wanting to equate their few days or weeks of quarantine to living in a chronically ill or disabled body.

I’m not an angry person, so I am trying, as always, to look on the bright side.

I know that when I return to work, everyone will have a better understanding of remote working and will be better able to accommodate me. I am hoping this experience raises the quality of the debate around universal basic income, medicare for all, and other socialist theories that are proving suddenly sensible as we face the biggest economic crisis of any generation since records began. And no, your few days of quarantine is not the same as living in a disabled or chronically ill body, but maybe you will have more empathy now when you hear that I haven’t been able to leave the house in days (when the world recovers, that is).

I know that when I return to work, everyone will have a better understanding of remote working and will be better able to accommodate me.

Settle in

We are going to be here for a while. So, make yourself comfortable. Dig out those blankets for the sofa. Stock up (but don’t hoard) on coffee and biscuits. Find out what local restaurants are doing take-out. Figure out what to bake with all that flour you bought for some reason.

I’ve been doing this, to a degree, for ten months now. Time flies.

You can do this

In some respects, I am lucky. I am exhausted so I sleep a lot. Sleep kills a lot of time. Nausea has made it so that I can only eat a few things on repeat, so the thought of living on toast and pasta for the next few months doesn’t daunt me. Most days I don’t leave the house, not because I don’t want to, but because I can’t.

You can do this. You can stay home and avoid brunch. You can only go to the shop when necessary. Relax. Watch TV. Get to know your family. Listen to music. Read books. Figure out a good routine for working from home. Drink tea. Sit on your balcony. Play with your kids or your pets or your game console or just sit and do a puzzle. It’s okay. The world will still be there in 6 months when healthy people can probably start to leave the house again. You’ll get through this.

Making decisions

In other respects, I am extremely vulnerable right now. COVID-19 is killing people and it could kill me. I have no immune system. I have no fight to give.

As a single person living alone, I’ve made sure to update my medical proxies to people I trust to make decisions for me if I am too sick to do so. 

Contemplating my choices

I am getting my advanced care directive formalized. Although I have had lung involvement with my dermatomyositis (DM), and I have a reduced lung capacity, the only decision I’ve had to contemplate up until now is whether I would want to go on O2, and of course, I would want that support if my breathing deteriorates.

Now I need to be sensible and make some choices.

I know that going on a ventilator is the treatment of choice when COVID-19 gets very bad, but I don’t know that I want to do that. It is that grey area on the road to more heroic measures. It becomes easier to make a choice further along the scale. For example, I know I don’t want a trach. I know I don’t want ECMO. Those are easy choices to make.

But a ventilator? Would saying no to a ventilator be suicide? Would it be reckless? For healthy people, recovering from a ventilator is a traumatic experience. For me, what would I be signing up for if I had to go on a ventilator?

You may feel like this is jumping the gun, but we’ve been told that 70% of us worldwide will likely get COVID-19 at some point. I am in the extremely vulnerable group who will likely need intensive care if I get sick. Once you are in ICU, the stats from the UK say 50% won’t make it.* So, yeah, I have to contemplate this. I want to contemplate this now, while I am not feverish; while fluid is not filling my lungs; while I am not scared and alone in an ICU bed with no one there to help me make the decision.

Like most difficult decisions in life, I already have made my decision, I am just finding it hard to make it official. The reality is unless there is a strong chance that I will come off the ventilator and make a full recovery back to where I am now, I don’t want to go onto one. Don’t waste one on me. Give it to someone healthy. Someone strong. Someone who works as an ER doctor. Someone with a family and kids. Give it to someone who is going to recover and give back to society. It’s okay. We are all limited edition now.

Hoping for the best

Of course, I am hoping for the best (and preparing for the worst). I am staying home. I am ordering food when I can. I had a busy week last week helping a friend move house, but now I am behaving myself and staying for the most part on lockdown. I do need to get my computer repaired on Wednesday, which will involve a trip into the CBD, but otherwise all my appointments are canceled or switched to online only.

I’ve started seeing someone (good timing? bad timing?!), who only goes outside like once a day for a coffee and he is the only one visiting me now. We won’t see each other if either of us has a temperature and we are washing our hands and being sensible. All we do is watch Netflix, which suits my level of energy these days, so the pandemic has some silver linings.

In the UK people like me have been told to completely self-isolate. No visitors. No leaving the house. They have been told to do this for 12 weeks. We aren’t there yet in Australia and my specialist has told me to just follow the guidelines and to be cautious, as I have been doing for the past 10 months anyway.

In other news

We are enjoying Tiger King on Netflix. I’ve started watching Better Call Saul. All Pod Save America shows remain a beacon in the dark. The Jimmy Fallon At Home Edition is pure gold. Friendly Jordies has me crying from laughter even in these trying times.

I’ve ordered a couple of new stitching products to keep me busy. 

I am having some good days, and even managed to eat some steak on Friday! We had a date night Chez Balcony with yummy take out from a local restaurant and some lovely views of Melbourne from my balcony. After all that worrying that I would never meet anyone who would just want to have quiet nights at home on the sofa, it turns out that is all anyone can do right now!

Stay safe, stay home, and wash your hands!

*Note: I am not a medical doctor! These statistics are what I have garnered from the news in Australia and the UK as of 30th March 2019. All of this could change in an instant. Please do not rely on this blog post for up-to-date info on the virus! 

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