Recently, I was diagnosed with “inflammatory arthritis, possibly Rheumatoid”. Many forms of inflammatory arthritis, like Rheumatoid Arthritis (RA), are autoimmune diseases and not part of ageing, like many people think. RA often can’t be diagnosed quickly or easily, so this is where I stand for now, thinking it is RA but feeling a bit in limbo, because it could be some time before RA is confirmed or the diagnosis is changed to another form of inflammatory arthritis.
The good news is, I’m finally seeing a Rheumatologist and undergoing treatment, but the reason I’m sharing this news is because my symptoms over the past four months have had a significant and sudden impact on my life. Before my experience I had no idea how disabling inflammatory arthritis could be, and how quickly it could happen.
Having a knee, shoulders and hips that are affected I found myself not only in a huge amount of pain but unable to do the most basic things like turn door knobs, change gears in a car, put on my own clothing and shoes, reach all parts of my body in the shower, sit properly on the toilet, or sleep, because my joint movement was so restricted. I certainly haven’t tended to my vegetable garden for a couple of months, been grocery shopping properly, played netball, or been able to drive the kids to school without pain and taking breaks.
My worst day, in the 4 months since I started to experience pain, happened to coincide with Mothers’ Day. I woke up needing to go to the toilet but had such excruciating pain in my joints that I couldn’t move. I literally could not move without screaming. My husband was out on the farm and the kids were still asleep, so I stayed in bed, flat on my back with my legs straight and my arms by my sides and cried. I wondered if I could handle the pain in my shoulders enough to reach for my phone and call my husband for help, but I couldn’t.
After about an hour the pain in my shoulders had subsided enough so that I could drag myself into a sitting position and the kids came in to give me cuddles and gifts. I had to tell them not to lean on me or bump me because it hurt too much. I was so sad at that point. I seemed to be losing the ability to do so many things, including snuggle my kids, and I didn’t know when it would end or if it would end. However, I’m pleased to say that a few weeks on from Mothers’ Day, I’m moving around okay, being independent again and enjoying close physical contact from family members, although fatigue and malaise are still big issues.
I’m still learning about the disease but I would say I’ve just experienced a flare of disease activity, and whilst things might be going well enough now, I could experience more flares or worsening symptoms over time, so I want to prepare for this. I want to be able to continue the lifestyle I enjoy, as much as possible.
So, how has my zero waste lifestyle been impacted by my inflammatory arthritis so far and what can I do about it?
Well, when you’re in a lot of pain, struggling to achieve the basic tasks in your life, and you don’t know what the future holds, it’s very hard to have the energy and mental capacity to tackle the bigger problems of the world, like plastic waste. Suddenly, the basic tasks in my life have become the big problems to be tackled (reminds me of Maslow’s Hierarchy of Needs, a theory of what motivates people). It doesn’t mean I don’t care about issues like plastic waste during a flare, but my capacity to act feels diminished. This is why I’ve been relatively quiet on the blog and social media lately.
The biggest issues I’ve encountered so far is leaving home to do the shopping (trips to multiple stores a week including the baker, butcher, and grocer with my own containers and bags) and cooking. Both of these tasks are very physically demanding for someone with arthritis. So, how can I feed myself and my family, let alone in a zero waste way, if I don’t even want to (or can’t) leave the house to shop, and when it is exhausting to cook?!
Interestingly, bulk food stores have accessibility qualities for people with arthritis because they use large bins with lids that are easy to use and large scoops for obtaining their products rather than fiddly packaging, but like I said, getting to the shops, or getting their food to me is a major barrier to over come before I even begin to consider accessibility issues around packaging.
I started looking into grocery delivery services and got a little hopeful when I learnt that Coles will deliver to your home in crates, without plastic bags, but then I discovered they don’t come to my area. I looked into Woolworths and it seemed like they would come to my area (for extra cost) but they didn’t offer a plastic bag free option. The only other option I could come up with for my area is FarmGate Online which delivers to my kids school and is very waste free, but I’d only be buying fruit from them. In the end, I got through the toughest months using vegetables and preserves from the garden, pre-made food I had in the freezer, and the simplest, least demanding options from the neighbourhood store nearest to me. The amount of recyclable packaging from convenience foods (mostly biscuits and snacks) increased a lot as I basically only focused on producing dinner each night.
I did feel guilty and I could have let myself feel like a plastic free failure, but my experience really just highlights the need for governments, manufacturers and businesses to step up and find better solutions to address waste issues. We need to continue to put pressure on these groups to completely rethink their approach to designing, producing, and packaging products by writing letters, signing petitions, educating those around us, and making submissions during community consultation periods. Recent successes with the major supermarkets proves this works.
My experience also highlighted how valuable stockpiling food and other things in my home has been, as well as having some level of self reliance and resourcefulness.
Over a year ago I began to buy bulk quantities of zero waste household supplies, like one years worth of toilet paper, soap, washing detergent, toothbrushes, olive oil, bi-carb soda, popcorn, etc., so I could spend less time driving and shopping and more time on more rewarding activities. I also did it for those times when I am sick or caring for sick family members, but I obviously had no idea that I would end up unwell for several months. Having a stockpile of zero waste household supplies meant that I didn’t even have to think about any of it, and there was no tricky packaging to negotiate or extra bags of shopping to carry. My hands and wrists are actually unaffected, but it was surprising to me how involved my shoulders were in many actions and in how little strength I had.
The other kind of stockpiling I had done was preserving a large amount of food I had grown and gathered by freezing, bottling, pickling, fermenting, and storing in a cool, dry, dark place. I also had a few pre-made meals in the freezer, but not many. I feel I was very lucky to have completed this work only a few weeks before my inflammatory arthritis became so bad that I couldn’t effectively work in the garden or kitchen. Moving forward, I’ll be looking for tools, like a long handled weeder, so that I don’t have to squat, allowing me to continue gardening as much as possible through flare-ups. I’ll also try to do more batch cooking and freezing when I’m feeling well so that all I need to do is reheat a frozen homemade meal when I’m not well.
Another thing I noticed is that a minimalistic, clutter free home – the result of low consumption and resourcefulness – is much easier to move around in (especially when using crutches) and to keep tidy. Even though I can’t zip around the whole house and do a top to bottom clean in a couple of hours like before, I can still stay on top of the main jobs by pacing myself, taking breaks, and staggering jobs over days rather than doing it all at once. I find keeping the house in some sort of order is important for my mental health because on the really bad days, I would look around from the couch and feel completely guilty for my lack of contribution to the running of the household and our family unit, and that would just add to my stress.
On one of these bad days, I realised there were some things I could do and tools I could use to make life easier. I could get a trolley for my washing basket and for carrying things around the house, it could even help in the kitchen as I found it very tiring to go from the bench to the pantry to the fridge, and so on. Other possibilities include a long handled shoe horn, and I even considered a high toilet seat at one stage! In my present state, I don’t need these things, but if I do need them in the future, I will be looking at secondhand sources.
Finally, this experience has reminded me that every moment is precious and that you never know when things are about to change. Things I love like playing netball and gardening have had to stop. The kids ask me to shoot hoops with them but I can only watch. I was so excited about more mother – daughter hikes, but became afraid that it would never happen again. It might sound overly dramatic, but this is the state I have been in for a few months because I didn’t have a diagnosis and I wasn’t receiving treatment. Now that I am receiving treatment I’m sure I will be able to continue with most of these things, it just might not be with the same gusto as before. I shall have to remain positive and wait and see.
I would love to hear from anyone with comments or suggestions on how to make life easier with inflammatory arthritis, or how the zero waste movement can have positive or negative impacts. My experience is that my zero waste practices made life with inflammatory arthritis easier in some ways, but that access to package free food or plastic free food is a major barrier.