Rheumatoid Arthritis and Disability - International Day of People with Disability

 At the time I was first diagnosed with rheumatoid arthritis, I had a nine month old baby, I'd been working a part-time job, I had a contract with the local state opera chorus, and was managing a household with a largely absent husband and a primary school aged child as well as the baby. 

My job was as a chef. I'd left my more high powered catering job and taken this part time job cooking in a child care centre. It was close to home, I could take the baby when I went back after maternity leave, it meant I could be available for school pick ups, and it was way less pressure than the previous job. It ticked a lot of boxes. Until my hands started to fail me. Losing control of my hands meant I had 'interesting' events like watching large chef's knives flying across my tiny kitchen, having to find another staff member to operate a manual can opener for me, struggling to peel potatoes for 45 meals, and so on... 

Ultimately, I left that job. Managing a new, unstable disease was hard enough, without trying to do a job that was clearly aggravating the situation. That was thirty odd years ago now. 

I wish I had the ability now that I still had back then. 

I struggle with the concept of disability. My social media today is peppered with posts commemorating the International Day of People with Disability. Lots of disability pride stuff. Lots of advocacy. Lots of attention being paid to various solutions that evolved to keep people working through pandemic lockdowns that happened very quickly - thanks, technology - but that the disabled community have been requesting for decades, with those requests falling on largely deaf ears...seemingly all too hard, until the majority of society required flexible arrangements to continue working. 

The thing is, my life hasn't changed enormously since COVID took over the world. The last time I worked in a job that took me away from home to an outside work environment was in 2013. That's the year the disease exploded without warning, and went from being mostly manageable to being completely out of control - to the point that it landed me in hospital, almost unable to walk. I continued, at that point, with remote access, to do most of my job - even from my hospital bed. Ultimately though, with insufficient pharmaceutical interventions due to the PBS regulations that saw me waiting almost six months to begin biologic drugs, I was medically retired. They needed a warm body in the office, sitting in my chair, and answering my phone, right there... And my warm body could no longer be guaranteed. 

It's taken me some years, but slowly I've built a mixed practice of writing and art that, while it doesn't earn me enough to live on, augments household income noticeably, and gives me a reason to get up in the morning. None of that changed with COVID. 

As I type now, I'm reminded via the pain I'm currently experiencing, of that time back in 2013. My most recent biologic failed. It had been failing for some time, and I'd been having an ongoing conversation with my rheumatologist about what to try next. But because a new drug takes time to kick in, there was the real possibility that in that gap between stopping the old one and the new one kicking in, I'd go backwards even further. And that's where I am now. I'm two weeks in on a new biologic. I am going backwards. My days are a haze of pain and exhaustion. My sleep is patchy, interrupted by pain. I'm getting work done, but not evenly, and not enough. 

I currently have a swag of deadlines. Art works that are time sensitive - because, Christmas. Sewing - which I took on almost a year ago to earn some extra dollars - which is also time sensitive, for the same reason. The writing, not so much as that will tail off a little now until next year. I finished the fourth drawing in a set of four miniature works, and should be drawing in one of the other pieces awaiting attention, but, my hands are really bad. Typing is painful too, but if I splatter typos all over the place, I can fix that and no one will know they were there. If I splatter paint or coloured pencils in the wrong places on an artwork, that's a whole other matter. And there's sewing to prep too, only I can't manage the cutting out scissors today, and I can't start any of the current batch until I can cut out the fabrics. 

The thing is, RA is a progressive and degenerative disease. It's not curable. The only way is down. The drugs, if a combination can be found that is tolerable - I am REALLY good at adverse side effects - and that works, help slow down the progress of the disease and prevent damage. But they can't stop it. In the time up to 2013, while it was comparatively mild, I was on very little medication, apart from NSAIDs and pain meds when required. Now, I have piles of pills to chug down twice a day, and a slow release opioid patch stuck on my left shoulder that I change every three days. These meds enable me to live a relatively normal life. 

Except, it's not normal any more, in that I can't work. Not if working means showing up in an office at the same time every morning day after day for the whole week. My body won't tolerate that at all. It's far too unpredictable. I can't rely on it to be consistently OK. Well, I can't rely on it to be any kind of OK... 

What I'm dealing with is known as 'dynamic disability.' It's a relatively new term in disability speak. It refers to those of us with chronic illnesses that cause unpredictable ups and downs of wellness. We have days where we can manage to do most of the stuff we might want, or need, to do. And then we have days when we're on the couch. In between, there are the days recovering from those days we did stuff... 

Last week, I had a morning when I woke up and tried to get out of bed, only to discover that one hip had decided overnight that not working at all would be a fun game to play. It took me a very long time to get to the point of sitting on the edge of the bed. Then I had to figure out how to get out of the bedroom - the pain in my hip when I put weight on that leg was excruciating. The nearest walking stick was folded up on shelves in the front hall, about six or seven metres away. The bathroom was another six, the kitchen seven or eight more, and the living room and its couch, a further eight or so... I did get there, eventually, and incredibly painfully. And added extra painkillers to the eggcup of morning meds, then jammed a hot wheatbag between my hip and the back of the couch, exhausted, waiting for the painkillers to kick in.

If I'd had to have been anywhere early that day, I'd have been in real trouble. Dragon Dad is working night shift at the moment, so although he was at home, he was asleep. I'd have woken him had it been an emergency. But it wasn't. It was just a bad day, when the RA bit me hard enough to remind me that I now live with a disability. A disability that doesn't play fair - ever. A disability that changes unpredictably. That one day lets me get out of bed, albeit stiff and sore...but then the next day makes that an almost impossible challenge. 

Most of the people I know with diseases like mine also struggle with the idea that we're disabled. Most of us tend to keep pushing ourselves to manage, adapting and working around the pain, the stiffness, the joints that don't work properly, the fatigue and the brain fog. But we resist labelling ourselves as disabled. 

Why? There's no shame in being disabled. Well, there shouldn't be. The lived experience can be very different though, for many people. I have been very fortunate, in the scheme of things. I have skills I can use to create work for myself. I have a partner who earns enough to support us both. The money I earn covers most of my personal expenses, and sometimes can add to the household kitty. There's no denying though, that our lives would be easier if I could just go out and get an actual job. At the same time, we both know that that's not physically possible for me now, because where are the employers who will take on someone who can't be counted on to turn up each day, and be well enough to stay all day?!  They don't exist. Neither do the jobs. 

So, on this International Day of People with Disability, I'd like to offer a shout out to the people who, like me, have autoimmune diseases that tease them with good days that let us think we're still normal, only to bring us crashing down with flares that leave us on the couch for days in a haze of extra painkillers. I see you. I understand the difficulty of claiming that disability label. I understand the conflict you may feel when you see other people with disabilities talking about disability pride, and loving their disability. The people who don't want to be 'cured' of their disability. I see them too. And I'm accepting of the fact that their stories are different. That they're absolutely right to be proud of the people they are. 

But, if someone comes up with a cure for RA, believe me, I'll be lining up for it. 

Work in progress, mixed media

Rheumatoid Arthritis in the Time of Covid19

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 that I feel 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 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 existing 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 the stresses of our financial state and my partner’s precarious temporary work situation that have been our normal for the last few years. 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.

 

 

Letter to my absent son

Towards the end of 2014, I wrote a very personal blog post, more personal in regards to family than was my usual habit. It was written when I was in distress, following events with No.2 son that had spiraled out of control - that were never in MY control in any case. You can read that post HERE, for context.

Six and a half years later, almost five years since I last heard his voice (on his birthday in 2015, the last time he voluntarily made contact, calling early that morning before I'd had a chance to make contact to wish him happy birthday), I discovered that he's removed the FB account he made when he decided to change his name, and the messenger function no longer works as I found when I tried to send him a message this morning, although, the profile still shows up with that name in my messenger file. 

Self indulgent? Perhaps. But the pain of my child removing themself from my life continues to eat away at me. I struggle when Dragon Dad makes big noises about how much he misses my stepson, who has been overseas for the last couple of years. Physically, he is far away, but they talk every day. No.1 son is interstate, and isn't hugely communicative, and that is also difficult to cope with, but he IS there. But where No.2 might be is, instead, a huge hole of unknowing... So, in the hopes that he might read this, I'm writing it here, because he followed this blog, and may find it.

                _________________________________________________________

Dear, L - yes, the name I gave you, and not the one you say you've change it to...because I don't know you as that person...

I see you've deleted that profile from FB now.

You're often in my dreams. You were there again last night. I carry you with me in some weird metaphysical way that's hard to explain. I guess there's something about having physically carried a child that lingers, maybe. 

I guess the biggest thing for me is always wondering how you are, if you're alright. If you found a way forward that's taken you to a place where you're doing something fulfilling that suits you, your abilities, and makes you happy. And the very hardest thing is just not knowing. And also knowing that if I had that time over when I came to Adelaide that last time I saw you that I don't know if I'd have done anything differently, because really, I don't think I had any other options - you didn't give me any, or Remi and her parents. I had a limited time there, constrained as always, by funds, or lack of. All I could hope was that you'd make a different decision than the one you made. 

I'm sorry for the ways I failed you - clearly I did, or you'd not have cut me off so consummately. I suspect all parents fail their children in any number of ways. I know mine did, in so very many ways. I have a letter I found in Nanna's things after she died that she'd written to me but never sent, at a time when I'd put huge walls up to protect myself. It was around the time before your father left us, when I was struggling to deal with a great many things - my RA diagnosis, Steve's growing separation from us which was partly because he couldn't deal with the diagnosis, fear of what the diagnosis would mean long term coupled with the constant pain and fatigue, and the emotional pain of having remembered the abuse meted out to me by my father which Mum was busily denying happened, along with your father and other family members. I had no idea, really, of how my pulling away from her affected her - I couldn't have. I was too busy protecting myself and trying to cope on my own with you and Jo, given S was so increasingly absent, even though he was still living with us. There is a lot more I could say about that, and things I understand better about myself and why I made certain decisions in the time beyond that, including getting swept up in the relationship with K, which had such profound effects for all of us, and probably mostly for you. But this is not the time or place for that. 

What I do know is that it impaired my ability to make better parenting decisions at times, for both you and Jo. And I'm deeply sorry for that. Should you read this at some point, and decide to reconnect with me, know that you can ask me anything, and I will do my best to answer with the truth. And in the spirit of that, yes I'm writing to you the day after Mother's Day, because one of the very big holes in my experience of Mother's Day these days, along with my mother's absence which is such a great gaping hole in my life, is the absence of you as well.

The alternate profile you made on FB is no longer there, and I discovered just now that the Messenger function for it no longer works. My mobile number is the same, as is my gmail. You may well be keeping an eye on this blog still, for all I know, and if so will have noticed I've not blogged for some time, for many different reasons. I planned to blog my way through last year and the lockdowns but in the end, I couldn't get myself into the right headspace. But I write this letter here to you know, knowing that you know this blog still exists.

You may also have found my art page on FB by now, and will see that somehow, I've become both a watercolourist and botanical artist...and some pet portraits along the way. So there are all sorts of easy ways that you could use to make contact, any of which would be so very welcomed by me and C, and your brother - who is married, by the way, which you'd know if you've been keeping an eye on my wall at all. 

I have looked for you, but honestly, I don't know the ins and outs of how to do that properly. I've stopped short of contacting your father, and if he has contact with you again, he's certainly not bothered to let me know. The last time I had contact with him was when our mutual friend from the Con died and I touched base to let him know. He was a no show at her funeral. G - who's also in Melbourne these days - often asks after you, as do T and H. J wanted to invite you when S insisted he have a big bash for his 30th, but we had no means of doing that. Likewise for his wedding in 2019. A asks if I've heard from you. NONE of this is in any way intended as any kind of emotional blackmail via guilt, by the way. Just the facts of what happens when a loved member of a family makes a decision to disappear. It's an ongoing pain that is just always there. 

 Anyway, enough. Just know that I love you. You're my child. Nothing changes that, ever. xxx