In my last blog detailing this journey of coming to terms with my chronic illness and the fact that this is just what my life is now, I hinted at some chaos…so here it is.

Before I dive in, you can catch up on the previous blogs in this journey here:

• Part 1: A sickly adult searches for answers
• Part 2: Finding my way to a diagnosis…of something

Let’s get into the chaos that led to my rheumatoid arthritis diagnosis going from unofficial to a full-blown clinical diagnosis, even if it took me three months. The ongoing pandemic took its toll on my mental health and productivity, especially in late 2021. I was in Dee Why in my two-bedroom apartment alone with Wally in lockdown from June to October. Although I’m an introvert who loves alone time, I struggled. I also received the unofficial diagnosis at the start of the lockdown, so I was coming to terms with how to manage it. But the most significant impact was on my work; I struggled to find the motivation to work, which meant that my work was suffering. I also left many things until the last minute, especially for my regular clients, who I invoice based on hours. Leading to me staying up until 3 am or 4 am on the last day of the month to get in as many hours as possible to invoice for that month so I have money to live on.

The end of September saw the consequences of these actions come to a head in the worst possible way. I had a lovely day; it’s Wally’s birthday on the 30th of September, so we went to a cafe to get him a puppicino and then to a doggie beach to swim and play. Then we came home, and I made him surf and turf for dinner and gave him his homemade cake. But what all of this also meant was that I had to rush to get work in around enjoying time with Wally, which was not the best strategy. I’m working on planning better in the future. Anyway, I hadn’t been able to do the 3 am or 4 am finishes as easily with all the extra stress of the lockdown. I stayed up until about 1 am but decided to go to bed cause I wasn’t working well and figured I could make it up the next day…this didn’t happen.

Here comes the chaos…never again

I went to bed and slept soundly until my doorbell rang at 5 am, and someone was banging on my front door. I was so confused and asleep until I stepped out of bed…my floor was about 2 inches deep in water. My downstairs neighbour was at my front door because water had flooded her apartment after flooding mine. Before going to bed, I had put the bath on with the plug in to soak one of Wally’s reusable pee pads and forgot to turn the water off. Flooding not only my apartment but also ran down the brick walls to my downstairs neighbour and flooded her apartment. The idiotic thing is I always (and I did that night as well) go to the toilet right next to my bath before bed but somehow didn’t notice the tap still running.

Suffice to say, I was in an absolute panic. In fact, I was on the verge of a panic attack, so I called my mum. Now any mother knows that when you get a call that early in the morning, it’s rarely good news, and well, this call was no different. I told my mum that I’d flooded my apartment and downstairs through stressed breathing and crying, freaking out. She did her best to calm me over the phone and said she’d come down. Now Sydney was still in lockdown, and my mum lives in my hometown, three to four hours away. Mum called NSW Health to confirm that she was allowed to breach the lockdown and come to Sydney on compassionate grounds to help me because I live alone.

I worked hard to try and get as much of the water up. I used all the tools I had in my apartment, towels, clothes, and everything I could find. I had a bathtub (which was now empty after I took out the plug) full of clothes and towels that I used to try and soak up the water. I got all electronics in the water out and put them on my balcony. To truly understand how chaotic this was, you must understand I’m a sorta-hoarder (as Antoni on Queer Eye once said of a hero). I have a lot of stuff, probably more than is needed in a two-bedroom apartment. So sorting out the mess was hard.

Eventually, I called my contents insurance to lodge a claim; I spoke to my downstairs neighbours and apologised profusely, and I am thankful every day for how understanding they were. I like that I have a good relationship with my Dee Why neighbours. Lockdown made that relationship better as I relied on them for human contact. We also both spoke to strata because part of the claim would go through them and part through contents. My mum did make it down, I also called my brother to get his advice on how to get rid of the water, and he has a wet/dry vacuum that he kindly drove from Lane Cove and dropped off for me. This helped me get some moisture out of my carpet before the assessors for my contents insurance came and organised the drying company.

I had to move out of my apartment whilst the drying equipment was doing its job because it made my property uninhabitable due to noise. Then my bed was a write-off, so I couldn’t stay there without a bed. So for three weeks or so, mum, Wally and I stayed in two different accommodations, the second of which was terrific. It was called The Barn House in Ingleside. The owner Karen was so lovely and accommodating of our circumstances which meant we were never sure when we’d be leaving. She had a sweet little dog. Our accommodation was a separate little barn house just in front of her place. She always gave Wally some love. It was just a tranquil retreat from the chaos at my apartment that I needed. The first place we stayed, I won’t mention. It was small and pokey, but we needed to book quick and couldn’t confirm The Barn House was dog friendly fast enough.

Stress causes flares

Now, most people would understand that stress causes flare-ups of chronic illnesses, but I was new to this, so it was a less than fun discovery. Going to my apartment every day to sort through my stuff meant lots of hand use. I was tossing out things that were highly impacted by the flood or doing a massive culling whilst in the mindset of fuck it, just toss it meant lots of hand use. When we went back to our accommodations each evening, especially during the first week or so, I could barely use my hands. They were in so much pain. I somehow managed to get invoices out and do some bare minimum work. However, I let my most regular clients know my situation, and they understood that I wouldn’t be as responsive or available. I wish I had paid more attention to how my hands looked during this period, but the pain was enough. I don’t remember if my hands had also become inflamed, and I don’t have any photos to check. The ones I have are of later in the period of stress, and my hands look fine.

I would push through the pain each day. I wouldn’t tell my mum how much pain I was in because she’d travelled down to help me sort things out. I felt I owed it to her to push through and get these things done so she didn’t come down for nothing or that she wasn’t the only one working at the apartment. So I pushed through the pain and rested as much as possible when the work was done. I was used to pushing through, not pain but the fatigue I had lived with for 20 or so years required me to push through a lot. However, pushing through pain was new, and I didn’t have strong painkillers to help. The anti-inflammatories weren’t hitting the pain at all.

Once things started to get sorted, my mum headed home, and so did I. Wally, and I lived out of my spare room whilst the rest of the work was getting done. We needed to have our carpet replaced, and the wood floor ripped up to dry the cement underneath before that also got replaced. Also had to have the cupboards in the wardrobes of the bedrooms replaced due to wood damage from the water and the vanity in the bathroom.

Finding gratitude in the chaos

Through the whole ordeal, there are some things I am and will forever be grateful for:

• The continual understanding of my downstairs neighbour, who’s life I turned upside down as well when I left that bath on. I will forever be grateful to them for not only waking me up when they did but also for the grace and understanding they showed me.
• Although it was due to insane circumstances, I could cull more than I ever would have done on my own. The fuck it, just toss it attitude may not have been the most environmentally conscious of me. Still, I had about 10-15 big black bags of rubbish, 7-8 bags of clothes to give away, a bag of manchester to donate to a shelter, a box of dog stuff and a couple of boxes of other donatable goods.
• My brother (and his family) helped by bringing his wet/dry vacuum and some plastic storage boxes and generally offering support. He also took a bunch of rubbish bags and some larger items for council pick up, so I didn’t overfill my apartment blocks bins.
• My mum, I am always grateful for this amazing woman, but she just really helped me survive. She covered the cost of the accommodation until my insurance paid out, she helped me sort my stuff out every day, she pushed me to chase things up with insurance and strata, she offered support, and she was just fantastic as always. We had a few moments of clashing because we have very different personalities, which means we handle things differently. But I honestly don’t think I would have gotten through the ordeal without her.
• Wally, I know it’s ridiculous because I am always grateful for him, but he was such a good boy through all this chaos which impacted him massively as well. He barked at the workers working on sorting out our apartment, but he also loved being with his Nanna. Mostly, like he always does, he just gave me the support I needed when I was going through such a stressful time.

All the chaos of my apartment calmed, my contents insurance replaced my carpets, and I got my payout from them. The insurer for strata was slower. There was a lot to deal with because the company doing the remedial work didn’t seem to understand the concept of a person living in the property that was damaged and, therefore, belongings were there that would need to be dealt with. They were able to work through my neighbour’s property ok because she was able to put most of her belongings in the bedrooms out of their way. On the other hand, I couldn’t do that as my bedrooms were also damaged. I needed the wardrobes empty for them to be fixed. I needed the floors empty to fix them, but somehow no one considered that I might have belongings.

Ending the year with excitement didn’t go great

Anyway, things were about to get interesting. I had been planning to move to the Central Coast all year but hadn’t found a new place yet due to so many other Sydneysiders making the same decision. The flood and end of lockdown pushed the whole search into overdrive. My mum and I had a bit of disagreement over my interest in moving because I focused on fixing the apartment, which she felt showed a lack of interest in moving, but the reality was I had a strong belief that it would happen when it’s meant to. It was mid-October, Sydney was out of lockdown, and I made trips to the Central Coast every weekend again. I put in offers on a few places, but I wasn’t willing to pay more than I felt they were worth, so I missed out.

My mum had also been coming up some weekends to look with me. We made our first trip during her last weekend in Sydney. I appreciated the help from her and my aunt on the Coast and their opinions, but in the end, it had to be my decision. There was a place I had seen online a few times but avoided knowing I would fall in love if I saw it in person, and I knew it would go for well above my budget. My mum insisted I go and see it, and what I expected happened…I fell in love. After chatting with mum, we decided it was a property worth the extra money, so I put in an offer.

The real estate agent was so great. He was friendly and always helpful when I had questions about the property and the area. After I put in my offer, he also explained that it was lower than the other offers and prepared me to lose out again. Then later that day he called back, they had accepted my offer! He explained that he had primarily been dealing with the husband, but this time both the husband and wife were on the phone, and they liked and appreciated I would be moving into the property and making it my home rather than using it as an investment. So I had a new home!

I was moving! I hadn’t moved for over seven years, and I had never done it on my own, so stress levels increased again. It was also creeping closer to Christmas. I’d agreed to a shorter settlement to get the property before Christmas. Basically, I’d cooked up the most stressful end of the year I could. I had to organise movers, pack up the rest of my apartment and still try and work and get things done. I have some advice for people who are moving, hire movers asap because I left it a bit later and then booked them for the wrong day and couldn’t change, so I was stressed to get things done. I also highly recommend hiring packers. They come into your home and professionally pack up your items so efficiently. I hired them for four hours, and they did what would have taken me weeks to do on my own. It also meant that I could work and earn money whilst they were packing.

Suffice to say, my stress levels rose again. My hands were flaring like crazy, but I didn’t go to the doctor to get my illness reviewed because of the circumstances I was moving. I probably should have because as time carried on, my hands got worse.

There was one night I couldn’t sleep due to the pain. I iced them, which helped, but the ice thawed, and the pain returned, no sleep. I took three different pain killed, Nurofen, prescription anti-inflammatories and panadol. Nothing touched the pain. I discovered it had a name: Painsomnia. I was crying; I was in so much pain. Wally was very attentive.

Then move day arrived. I was alone, with painful hands and my dog and the movers took advantage. They kept adding charges and things. I just said yes because I wanted to get the whole thing done. They pushed me to pay by cash. They pushed for a review. They just pushed and put heavy boxes on top of boxes clearly marked fragile. I won’t be using them again, and I let the company know.

My mum came down a few days after I moved to help me with some unpacking which, again, I was so grateful for. I had to make another couple of trips back to my apartment in Sydney to get some stuff. Doing this made me realise my diagnosis would have short-lived the time left in that apartment. I made one trip, albeit while carrying heaving pictures and boxes, and my knee became so inflamed and painful that I could barely get off the couch when I got home. This knee pain was a new symptom.

Christmas without hands

A week after moving house, I headed to my mum’s for our family Christmas. My hands were so painful and inflamed I could barely use them for anything. Driving was a struggle, and it made me realise I would need to give up my obsession with having a manual car. Changing gears with hand pain isn’t fun. I was grateful to be around family because especially my mum, who was across my diagnosis and was there to help when I couldn’t open bottles or struggled to do things.

There was one moment we were all going out for lunch, and I put on a particular pair of jeans, but I couldn’t do the button up. I went into mums room to ask for help, and she then pointed out an issue. What would I do when I needed to go to the toilet…so I went back to my room and changed. In fact, I bought some new bras, shorts and pants whilst I was home because I lived in elasticated clothes. Anything else was too hard or painful for me to do up a bra clasp or a fly on jeans or shorts.

At my mum’s urging, I also booked a telehealth appointment with my doctor in Dee Why because things had progressed so far. My doctor agreed it sounded like my rheumatoid arthritis had become clinical, and she also prescribed me codeine in case of any more bouts of painsomnia.

My mum spent Christmas at my new house, and we also made a trip to get the last of my belongings from Dee Why. It was so lovely to finally just rest. Yes, I had boxes to unpack and stuff to sort out, but the chaos was primarily calm. My apartment in Dee Why was sitting empty because the insurer didn’t get things sorted to replace the wood before Christmas.

New Year, new things to consider

The end of my 2021 was chaotic and crazy. I started 2022 with some chaos in terms of travelling back to mum’s place to get my stuff from there, having my brother and his family visit my new house and having my other brother kindly bring down some new lounges for my new home. I also finally got around to booking my appointment with my rheumatologist to get my diagnosis reviewed.

Unfortunately, I left that a bit late, and I couldn’t get in until mid-February. The reality was I knew the diagnosis, and I only needed my rheumatologist to prescribe the drugs, but I was handling things with the ones I had. My hands were also starting to recover from the chaos. I completely forgot what it was like having fully functioning hands with full power behind them.

When I did get to my rheumatologist, I showed him the photos I had taken of my hands over Christmas when they were at their worst. And some more recent ones where they were inflamed but not a lot. Unfortunately, there was only minor inflammation when I went to see him. But the photos were enough, and he said that it had become clinical and prescribed me prednisone whilst giving me information on methotrexate for us to discuss in May.

So I finally had an official diagnosis and some different drugs meant to suppress the inflammation. The prednisone seems to keep the symptoms at bay, but I am still in pain daily, and although the inflammation is lower than the worst I’ve seen, it’s constant. Not sure what will happen in May; I understand my rheumatologist’s hesitation in putting me on methotrexate as it’s a very hardcore drug with some shocking side effects, and long-term use can cause bodily damage. But it’s also the drug used to stop the progression of rheumatoid arthritis, whereas prednisone is a steroid used to manage the symptoms.

Life as I know it now

My hands are pretty well functioning at normal, not that I know what that is anymore. There is constant pain in my fingers and wrists. I also have pain in my knees, ankles and toes. Sometimes there is pain in my elbows. Look, this illness is a chronic pain illness, so I am just coming to terms with this new normal. I talked to my best friend about the decision to go on methotrexate and how I just wanted the pain to go. She explained that there is a distinct difference between acute pain and chronic pain. Which helped me realise that I was so used to dealing with acute pain that I take pain killers, and it’s gone, and now I need to adapt to this chronic pain life where it may never be gone.

Prologue: My apartment got all fixed in February and now has tenants, which is excellent as it will release some of the financial stress I have been under the last few months. There was work the strata insurers needed to do. I also had work to do with issues I’d been living with but couldn’t let renters live with. But it’s all done, and now they’re living there, and Wally and I are loving life on the Coast.