Last year, when the pandemic hit, I considered blogging my experience of living through a global pandemic of COVID19 with RA, being immuno suppressed due to the meds, and what that all meant for my day to day lived experience. So I started a draft. And another one. And another one...and not a single one of them would come together. So I gave up and just got on with DOING the lived experience.
Then this week was the meet up of my writing group. This group evolved out of a writing course I was gifted by an editor friend in New York. A short, intense course that revolved around writing about our mothers. All women, all but me located someplace in the USA. Finding a time for our weekly Zoom classes that would work took some time, but we got there. We would assemble, all of them with their evening wine, and me with my morning coffee, to discuss our weekly assignment and, in doing so, developed a closeness that surprised us all. We got to the last day, and no one wanted to just walk away. And so, a writing group was born.
We meet monthly now, and take turns creating the prompts and hosting. This month our host set a selection of prompts around the concept of mindfulness. It was a deliberate contrast to most of the work we did in the course, and since, which is rooted in the past. As anyone who's a regular follower of this blog would know, mindfulness as a concept, along with gratitude, is something that has become somewhat tarnished, given the way it gets thrown around within the AI disease communities, and those who'd have us toss all the meds and embrace 'natural' 'cures'... So it's not something I tend to focus on, although my painting is a type of mindfulness, by default, as the concentration required takes me out of my head and keeps me focused on each and every brushstroke. However, that's an incidental characteristic of doing creative work, as opposed to deliberately setting out to 'practice mindfulness'...
So, I struggled with the prompt. It also coincided with the month of June which is a difficult one for me. My mother's yahrzeit (anniversary of her death) is on the 7th, her funeral was on the 13th and I still carry the clearest images of that day with me, my estranged son's birthday was on the 15th (he was 30 this year), and Mum's birthday was on the 19th. So I've felt emotionally raw all month, and particularly prone to tears, so to write about mindfulness just felt all too much, to be honest.
My first draft was an angry rant, so I binned it. And decided I wasn't ready to try again. Then early this week I realised that today was meeting day, and I was running out of time to write something. The following piece is what happened. I didn't actually plan to write about the pandemic or my disease, but that's what happened. After the meeting, and the feedback I received from the others, I decided I'd publish it here, with this intro for context, given it's in a slightly different style to my usual writing here on the blog. I may go on to write more about this pandemic experience as it has been, and no doubt will continue to play out. I may not. But here is just one glimpse. And a piece of my artwork that's been done during this time, because I can!
As someone with the autoimmune disease Rheumatoid Arthritis, I am encouraged by doctors, allied health practitioners and many of the people within the same cohort to embrace mindfulness as a practice to alleviate symptoms. To ‘practice gratitude.’ To listen to my body and be in the moment. Apparently, this is going to alleviate symptoms. Lessen my need for powerful analgesia.
Sitting ‘in the moment’ as I type, I am aware of the pain in my hands, in every tiny joint, particularly a spot at the base of my right thumb that has been increasingly troubling me when I try to grip pens, pencils, paintbrushes, sewing needles, pins, cutlery, etc. I am aware of the stabbing pain in both knees, and the burning in both ankles that correlates with the burning in my wrists.
I am also aware, after a week of extreme cold weather off the back of a violent storm in my region, that it is warmer outside. I am not wrapped in a blanket at my desk in addition to the layers of woolen clothing, as I have been for the past week.
I could go out. Change my shoes from my habitual knee high ugg boots, that radiate blessed warmth into those painful ankles and feet, to a pair of runners. Fix my hair, which is still up in its knot from my shower. I’ve shaped my bread, so I’d be clear for the next hour and a half while it proves. A walk could improve my mood, raise my heart rate, ease the headache I woke up with this morning, send some lovely painkilling endorphins through my system.
But I sit here typing. I have a deadline. Well, I have two. This essay, of course. But also ten brand descriptions for the pet supply store that is a current client, due tomorrow. Both could wait. I could walk, and come back refreshed, and work. But I don’t.
The acting state premier, at the daily press conference this morning, announced new easing of the restrictions we’ve been living by in the wake of an outbreak of COVID19. Two outbreaks in one, both from our deeply flawed temporary hotel quarantine program that has been left to run as our main defence against the virus, due to the lack of willingness on the part of a federal government that doesn’t wish to be held accountable for anything that might go wrong. Had they acted and built fit for purpose quarantine centres to replace those long decommissioned facilities, we may have avoided this latest outbreak, and the fourth lockdown this state has endured.
Going outdoors, and potentially encountering strangers who are ignoring distancing requirements, who may mock me for continuing to wear a mask, although we are permitted to not wear one outdoors now, isn’t something I want to deal with. My vulnerability to the virus has been the most foremost factor in my decision making about leaving the house for eighteen months now.
I am reasonably content in my own company. I am used, in these latter years of financial constraints, to spending long periods of time alone. I am not an introvert, but I am shy and wary of dealing with people I don’t know. I avoid confrontation whenever possible. I don’t want to have to explain to people any more why I’ve not been in their café forever, or shopped at the local butcher where the staff have steadfastly refused to wear masks, even through our disastrous second wave last year.
I am becoming a hermit.
I have had my first shot of the AstraZeneca vaccine. Two weeks prior to the federal government raising the cut off age to 60 and over. I am still so angry about that. My specialist’s preference, and that of all my friends’ specialists, was that we receive the Pfizer vaccine, as we’d be fully covered within three weeks, as opposed to three months with the AZ. But two weeks ago, when I had that first shot, Pfizer wasn’t an option offered to me. With only a single dose of the AZ vaccine on board, and nine weeks yet before I can have the second, I have very little defence against the virus, particularly the Delta variant that was part of the recent outbreak here. There is a second outbreak unfolding now in Sydney, with daily cases now starting to increase with larger jumps in the numbers. Our border is now closed to people in the hot zones there. But last time we had closed borders, people still slipped through and seeded an outbreak here.
I no longer trust those people I don’t know. Those people who, on social media posts, bray about only locking down the vulnerable and the ‘sheep’ – those who follow the government health advice. The people like me, who would stand very little chance against the virus, as we have almost no functioning immune system due to our meds.
I am grateful for the roof over my head, and a partner who is fully aware of the consequences for me should I be exposed to the virus, who has carried the load of shopping and errand running while working full time for the last eighteen months. Who has endeavoured, despite severe financial constraints, to ensure that at all times, I had everything in the house I might want or need, to lessen the possibility that I might have to go out. I am grateful to my GP who, after our telehealth appointments, faxed my prescriptions to my chemist who, in turn, took my orders to fill them over the phone, along with credit card payments, so that all that remained was a moment for my partner to duck in and collect the prepared parcel of medications.
I am grateful for those physical acts that contributed to keeping me safe. I am grateful for the technology that has enabled me to maintain contact with friends and family, and even to broaden my world with new experiences and new people.
I have been mindful to let my partner, and all those other people, how much I have appreciated the effort that has gone into those acts. I am mindful of how much less attractive the outside world feels these days. At the same time, I am mindful that not venturing out isn’t good for me, physically, mentally or emotionally. But I also struggle to combat the fierce caution that keeps me at home where I know it is safe.
I am particularly mindful that my disease has been in a heightened state throughout this time. It is particularly active, and was already so prior to the pandemic due to our financial state and my partner’s precarious temporary work situation. The pandemic added another layer of stress, which pushed the disease into another level of activity that, this time, showed up in my regular blood tests. This lead to revived discussions with my specialist about altering my medical protocol, perhaps changing my biologic drug.
On the bad days, like today, I wish we’d done that already, and I was on a new medication that was working better. That I felt better. That I had more energy and less pain. More interest in life outside my house and less brain fog. More inspiration about new projects and less preoccupation with the sheer effort of will required to shake off the lethargy that is dogging my days at present.
During our last discussion, we abandoned applying for a permit to change my meds, based on the level of disease activity. It’s high. It is imposing constrictions on my already constricted life. I am in more pain constantly. My sleep is impacted. I am exhausted all the time.
But in stopping it, and starting a new medication, there will be a gap. A gap between a medication that’s not working optimally and a new one that may or may not work better, and in any case, will take time to kick in. Time during which I could very well go backwards and find myself in more pain, with the disease able to take hold and flare up more fiercely.
I am mindful of what that could cost me in productivity.
I am between a rock and a hard place.
I have been here for some time now.
I don’t like it.
I want it to change.
I need it to be different.
There is pressure from my partner to make that change. A big conversation had to be had. We had it. I think he understands what the potential issues are now. I hope he does. He likes to fix things. He can’t fix this. It frustrates him and that frustration boils over and becomes something that contributes to my stress levels.
These are the moments in which I live, one after the other. This piece is the result of sitting with them, examining where they leave me at any point in time. This mindfulness does nothing at all to alleviate my pain, my brain fog, the exhaustion of living with a body that doesn’t work properly. The gratitude I have for my partner’s commitment to me and keeping me safe, our mad cats who make me laugh when little else does, my friends who keep in touch no matter how rarely we physically see each other, and those who continue to buy my work is profound. But it doesn’t change the impact of the disease.
Eventually, the time will roll around to when I can have my second shot of the AZ vaccine. I will continue to wear a mask when I leave the house. I will continue to limit how much I leave the house and where I go when I do. There are doubts about the level of protection I will get from the vaccine, as my suppressed immune system will struggle to mount a response to it, and may not be able to produce enough antibodies. A recent trial of antibody responses to vaccines for people like me found that the optimum response was achieved with the mRNA vaccines. Pfizer. Which I didn’t get, because there was no nuance in the government’s priority grouping of who got which vaccine here, and the age change came too late for me.
There is a possibility that booster shots will start to be offered here, in which case, I will likely be offered that in the form of either Pfizer or the Moderna vaccine which the government finally ordered. However, with only three percent of the total adult population here fully vaccinated four months after the rollout commenced, it could be a long time before that is available to me.
It could be a long time before going out is safer.