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.

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33 thoughts

  1. Gosh Tammy, so sorry to read this! I saw you live at the Sunny Coast Zero Waste Masterclass last week (you were AMAZING!!!) and would have never known you’ve been unwell. I had a brush with RA last year (that just turned out to be a bad virus) and relate to how scary it can be. It made me reevaluate how ‘busy’ I can be and I found rest and recovery (i.e. giving ourselves a good break) really helpful xx

    Liked by 1 person

    1. Oh exactly Kali, the older and wiser I get the less concerned with being busy I am and just want to enjoy the precious moments with people I love in an environment I love. Thank you for saying I was amazing at that presentation!! Only a week earlier I was still stressed about how much discomfort I would be in while travelling, but they turned out to be some of my best days for a long time (phew). xx

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  2. I’m so sorry you are experiencing this Tammy! I went through a period of enduring RA and it was extremely painful. This was about 35 years ago and was put down to the extreme stress I was undergoing. Don’t add to your woes by feeling guilty, do what you can, take help when offered and keep spreading the word so others too can make an impact. I now have quite debilitating osteoarthritis and have had to find ways to minimise pain and maintain ability to function. I find those plastic ziplock packets impossible to grip so lucky I avoid them, gloves, scarves and warm clothing (even when not really cold) to keep joints warm makes a huge difference, I’ve made a few little trolleys from old casters screwed onto scrap wood so I can wheel things around rather than lift and carry (especially flour bags). Little changes like not peeling potatoes, just soaking for a while to soften dirt then rubbing with a sock over your hand as a glove. I now use a citrus juicer rather than hand squeezer. Containers can be a bug bear for pain too, the ones with side flaps are easier than ones with lids the same size as the container. I hope you get some relief quickly, you are the priority to be nurtured.

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    1. Thanks Maree, this is all great advice. I have a bit of early osteoarthritis too, which is what I thought the problem was initially, but then I began to notice differences and obviously my pain and swelling got quite bad. I hope your OA doesn’t get any worse. I know I shouldn’t feel guilty but it’s hard to shake off sometimes. I also think that if I hadn’t already started on a journey to slow life down, I’d be going much more crazy! Thanks again Maree.

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  3. Hi Tammy
    I am not sure which part of the Gippsland you are in, but if you are close to the Valley Manny Markets now deliver. …. take care, i know that feeling when the body does not work properly. I truly like reading your writings
    Kel

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  4. So sorry to hear of your poor health…..don’t beat yourself up about not posting on social media – your health and your family must come first Have you tried IGA Korumburra for home delivery? They might be happy to use crates that you provide and swap over when they deliver, and with supporting locals, could even be interested in partnering with you to promote waste minimisation……just a thought. Also, have you considered setting up a food co-op with other interested locals – you could be the brains rather than the brawn in the group. Even the new Udder & Hoe in Loch may be happy to work with you in a co-op type set-up.

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    1. Thanks Felicity. Do IGA deliver? I didn’t know this, so maybe that is an option! Oh you’ve given me more hope by reminding me about Udder and Hoe in Loch (they haven’t opened yet have they?) and also the new store coming to the Parry’s building in Korumburra. I’ve been in a little bubble dealing with this stuff and had forgotten about other things happening in the region. I really should start socialising on social media again, haha. Thanks Felicity xx

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  5. Tammy
    I’ve been diagnosed with RA and related problems Sjorgrens and Raynauds and wept away as I’d just moved house and to a new area 2 hrs away from hospital and supports. Winter fills me with anxiety, so a totally support the coments on warmth, click lids, grippers, and also I’ve created a space/place where 2 hard to open things sit for other folk to open!
    I’ve got relief from using curcumin -turmeric extract my fav brands are Bio-grape ( a powder – messy can be used in a variety of ways – as I’m not regular with tablets) or ethical nutrients it’s a matter of what works the best with your digestion. Walking on sand helped my feet. Now it’s mainly in my hands, a challenge for sure
    I haven’t been given any conventional medication as for various reasons they were contraindicated.
    Life does fall in a heap and then I poke my head up and go ‘how else could this be done’
    The hardest thing is the unpredictable nature, a good day so get everything done hm harder next day, after 4 years I’m slowly learning ha a good day enjoy it and do half that big job and have a break. So like you say double triple time required for daily living.
    Thinking of you, take it a bit slower and slowly the brain’s pain gate will change and
    different ways of managing bring results.
    And lastly don’t believe those that might say nothing can be done it will only get worse. That’s not been true in my case I’m in a holding pattern !
    Yours Neri

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    1. Thanks for sharing your experience and what works for you, Neri! It is unpredicatable and I try to explain to people that it changes over the day and from day to day and from week to week. I might barely be able to walk when they see me in the morning but when they see me in the afternoon there is no noticeable limp. I think it confuses people unfamiliar with inflammatory arthritis. I was definitely down and out a few weeks ago, but as you say, I’ve popped my head up again and am thinking about how to make things work, to accept my situation and to not compare to others. Good luck on your journey too, and I hope you manage to find further relief. Tammy

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      1. Thanks Tammy sharing ideas helps and no packaging is essential as some days I have no grip in my hands so fruit and veg has to be picked up one at a time. That’s where I really notice the difficulties – the little every day things.
        In San Remo there’s Freedom Organics, a great ‘bring your own containers’, bulk little shop who are so helpful and often price match with the supermarkets. And we have also have Udder and Hoe in Kilcunda
        I’ve loved reading your posts and look forward to sharing this journey with all its challenges with you. You’re ahead already I think, as a Dr in the Alfred told me, “don’t eat anything out of a package” . Harder said than done! I did change my diet radically, less precooked processed foods more fresh veg.
        Although some days I buy the fresh precut when chopping is out.
        I also bake whole pumpkins, carrots, potatoes other hard veg as then I can chop the softened product and use it in other ways.
        Wishing you well and much healing and pain free days

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  6. Sorry to hear that you are not well, I have had similar issues since Christmas time; chronic migraines in my case together with unexplained iron deficiency, so low that I have been receiving infusions, but with little reprieve, so zero energy more often than not. It is not an easy road, but I tell myself there is always someone else who is worse off than me… I am relatively new to bulk/low packaging shopping, almost a year now, but I am able to get all the basic shop done with the assistance of bloggers like you that have been a huge help with tips on how to accomplish this. So thank you for sharing your tips, but thank you for sharing your struggle as well, it is important to be realistic and knowledgeably plan for the times when we may not be running on a full tank. Many thanks Tammy.

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  7. Also, I read an interesting email from Woolworths commitment to reducing their own waste and initiatives such as removing plastic straws from their stores; https://www.woolworths.com.au/shop/discover/sustainability?cvosrc=email.sfmc.wr_cvm_edr&cvo_campaign=CVM-0202&utm_medium=email&utm_campaign=CVM-0202_6712960_20180605&utm_source=wr_cvm_edr&utm_content=14bb54fc4ee835e571d2b1c174f9c608f07462f98019315acf70bd35e07b2334&crn=14bb54fc4ee835e571d2b1c174f9c608f07462f98019315acf70bd35e07b2334&channel=email

    It’s worth a read, I was pleasantly surprised at the comments and anything that makes our waste reduction efforts easier has to be a good thing.

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  8. Thanks for your honesty in sharing this Tammy. This isn’t an issue for me, but as a community waste educator it’s a good reminder about the barriers that can exist for people I work with. Also it’s a helpful resource for me share with people who are struggling. It sounds really challenging and exhausting for you. I haven’t come up against physical limitations myself, but definitely have run out of energy and resources. Emotional energy can be as limiting as physical energy. I hope you can find meaning and growth out of this recent journey, and that it strengthens your network. x

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  9. Hi Tammy,
    So sorry to hear of your pain issues. I’ve been following and inspired by your posts over the past year or so as we have made changes towards a much less wasteful lifestyle. Just wanted to share that I completely understand how difficult the food packaging situation is when you are debilitated – I have had a very slow and painful recovery from my third child three months ago and have struggled venturing very far from home. My local Woolworths has been absolutely fabulous with accomodating my request for no plastic bags with our home delivered groceries despite being told by head office that it couldn’t be done. Perhaps you could speak to the Woolworths Online staff member at your local store? They put our produce in boxes and the rest comes loose in their crates and we transfer into washing baskets at the front door. I honestly could not speak more highly of the service from Warragul Woolworths! Best wishes with your recovery.

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    1. Thanks Paula. I hope your situation improves very soon. It must be hard with all that is going on and also trying to keep up with two older children. That’s great to hear of your success with Woolworths. I must admit I have low expectations of them from previous encounters, but you’ve made me realise that I should keep trying, especially as momentum for the plastic free movement has really grown in the past year. I’ll try to find out which store would deliver to my area as it could be Warragul, Leongatha, Koo Wee Rup, etc. Thanks.

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  10. Tammy, I’m sending you a gentle hug for use when next needed! Don’t be hard on yourself, particularly on those painful days when we are all low. Just stop and think about the marvellous things you have created and started via this very blog, not to mention all the other things you do. There will be good days, and fabulous days, still, as well as the hard ones. Call in some credit from the community you have created and get a bit of support from us all, even if it may only be online!
    It won’t be politicians or large corporations who will bring about the changes we need, it is grassroots community movements like you have created. You have much to be proud of.
    Now make sure you look after yourself! When you have a flare up, rest and rest (I’ve got my nurses hat on now) and rest some more. If you have to let go of some of your principles for a while, so be it. Don’t beat yourself up about it, we all have times when that happens.
    And please don’t be too horrified when you see the waste stream coming from the health system. Your blog helps me stay committed to not only recycling at work but also to finding other ways to deal with how our system now works (I’m in Theatre and I think we produce the most waste of all – it’s shocking). Community change is one of the things that will help bring this about.
    Kindest regards, Cathy S.

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    1. Oh Cathy, thanks for this. You’ve lifted my spirits and reminded me that I have made a large contribution. I’ve also realised that I can use my voice to build up awareness around the accessibility aspects of packaging from a different perspective. Everything I’ve seen so far is about how to open packaging easily, but why not just get rid of the packaging wherever possible. Thanks again, Tammy.

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  11. Sorry to hear of your suffering but you sound like a real trooper when it comes to managing it. Woolworths has committed to going plastic-bag free soon so it should change for their home shopping containers too. It would be worth finding out what they are going to be using for their home deliveries instead of plastic bags. I wish you well.

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    1. Thanks Ruth. When I was looking into it a few weeks ago their website info sounded like nothing was really going to change for their deliveries after the bag ban, but I’ve just gone back to their website (since their big announcement a few days ago) and found this promising snippet of information.

      “We are currently trialling a number of new ways to package online orders in several stores across Australia. We are looking forward to rolling-out a reusable solution that is the best fit for our customers and the environment.”

      I look forward to seeing what they come up with, and hopefully it will apply to my region.

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  12. Hi Tammy, I sent your post to my niece Jacquee Alger. Jacquee lives with R.A she has had it for many years. If you would like to message her she would love to talk to you about arthritis Regards Helen.

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  13. Wow Tammy it sounds like you have been through an incredibly difficult period. I too have a blog and caring for my two adolescents with mental health issues means sometimes I have the mental energy to invest in my blog and sometimes I don’t. Life is a long race and your message inspires many. Please take time and care.

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