Please help me on my road to recovery

I need your help. It makes me tear up just admitting that to myself, let alone releasing that truth to the world. But unfortunately, it is my current reality.

I’m at a fork in the road and the choices that lay before me are:

1) Give up on being a jeweller, shut down my business Amelie Atelier for good, sell absolutely everything I own and use the money to see me through this health crisis.

2) Give up my pride and ask for financial help while I recover from illness and get my life back.

I’m not a huge fan of the first option and neither is my partner nor my family, so I thought I’d give option 2 a try first.

I’ll attempt to briefly explain what’s happened, but it is a long story so my apologies in advance for the long read.

I’ve been chronically sick for the past 15 years and occasionally that’s seen me bedridden for months at a time and other times it’s seen me functional but struggling. Recently though, my chronic condition has meant a complete break down and upheaval of my life and I don’t have the financial resources to get my health back nor get my life back on track.

I’ve recently discovered that all this time I was suffering from Chronic Inflammatory Response Syndrome (CIRS/ AKA Mould Illness). This doesn’t mean that all those other diagnoses over the years weren't correct (Chronic daily migraine, Chronic Fatigue Syndrome, Mast Cell Activation Disorder, Polycystic Ovarian Syndrome, Irritable Bowel Syndrome, Anxiety, Depression, etc, etc). Those diagnoses were simply naming some of the symptoms of the much bigger problem of CIRS which is a multi-system, multi-symptom illness, caused by living and working in water damaged buildings and breathing in mould mycotoxins. Some unlucky people (25%) like me are genetically more susceptible to it than others, but breathing in mould will eventually make anyone sick.

A picture of some of the mould in the crawl space in the ceiling, caused by a leak in the roof at the Erina Heights workshop that was making me seriously sick.

So for years this has been happening to me in various homes and work places, and I’ve been limping through life, finding a band aid fix here and there and spending my entire life’s savings on specialists, tests and treatments that never got to the bottom of it. That is until earlier this year when I moved to the Central Coast of NSW to be with my partner, Wes, and it became undeniable that mould was killing me slowly. The last straw was when I nearly ended up in emergency as my heart was beating so fast, it felt like it was going to jump out of my chest. An ECG and holter vest monitor assured us I did not have a heart condition, it was my indoor environment that was causing the palpitations.

I could put up with daily migraines, brain fog, fatigue, digestive issues, concentration and vision issues etc…. But when your heart is trying to leap out your throat, it’s time to finally listen to what your body is screaming at you. "GET OUT!"

This was my puffy face in the mornings when sleeping in a mouldy house. This is the most visual symptom I get. CIRS for me has largely been an invisible illness and I can be having a migraine or an episode of extreme fatigue and still people will say to me "you're looking well!" I think it's from over a decade of living in constant pain and exhaustion... I must be good at hiding it.

So we got out of there. My specialist CIRS doctor directed us to discard of anything that couldn’t be properly cleaned from our mouldy home and mouldy workshop. Whilst our stuff all looked fine, it was toxic to my super inflamed body and if we had taken it to the next place it would contaminate the space with mycotoxins and I wouldn’t ever heal. I was devastated as my partner and I watched thousands of dollars worth of belongings disappear and our bank balance drop as we replaced them.

Sadly, we had only just finished setting up the workshop. I had to pause my jewellery business and say goodbye to my income. I became dependant on Centrelink, my parents and Wes, at a time when my medical bills were ramping up well beyond what Centrelink can cover.

My mental health declined as my life fell apart, so Wes took me on a trip back up to Byron Bay where my friends and family were. Unfortunately, the car made me sick, the rooftop tent made me sick. I had to sleep contorted, with my face outside of the tent in the winter air to prevent a migraine. There was no escape. The Airbnb’s we booked for respite from the wet, windy weather made me sick too.

Then Covid kicked off back in Sydney and The Central Coast and we realised if we went home Wes wouldn’t be able to get to work (in WA). We also thought that some time in the dry climate of WA would be good as a mould sabbatical for me. So completely unprepared for the trip, we drove across the country on a whim. Unfortunately, we arrived in the middle of the wettest winter Perth had experienced in 20 years. It was demoralising. Our friends homes made me sick, the room I found to rent while Wes went to sea made me sick. The osteopaths building made me sick. I literally could not be indoors anywhere in southern WA without it flaring my symptoms because my body was so inflamed and even the smallest trace of water damage set me off.

Wes spent a chunk of his savings on a Jayco Jpod (mini caravan). It’s our little “Escapod” which is essentially a tiny bed and closet with a sliding outdoor kitchen. We spent more money to have it and the car ozoned (to neutralise any mycotoxins that were inside them) and we took off to a drier climate for Wes to do his next 4 week swing at sea. I started my mould detox protocol in Broome and I got VERY sick. But if you’re needing to sweat out toxins and live an outdoor lifestyle then Broome in the dry season is the ideal place to be. The only problem is that because of all the cyclones in the wet season… 99% of buildings in Broome are water damaged, and they all made me sick.

We were still paying rent on our vacant apartment in the central coast, storage fees for all my workshop equipment and rent on my unusable workshop (because the landlord did a backflip on his promise to break the lease early in order to remediate the building). We had no idea how long Covid lockdowns in NSW were going to continue for so we made the decision to get all our stuff sent over to WA so we could continue to sort, sell, clean and use it. In the space of 9 months I spent over $11,000 to have my stuff moved from Byron Bay to the Central Coast and then over to Perth, and still with no place to call home.

When our stuff arrived, the exposure to it made me flare up again. But I pushed through, wore a fume mask to reduce the flare up, and we got rid of more stuff. It rained every day we were down south. Our Escapod outdoor life sucked in the rain and the cold of Fremantle. It also made me nervous about mould growth in the pod so we were very keen to get back up north where it is hot and dry. Once up north we were doing some work on the car which led to the discovery of mould growing on the inside of the car doors which explained why I kept getting sicker in the car. So there goes another $4K+ to remediate the car.

We have to head south to Perth again next week because recent bloodwork showed that my thyroid is now playing up (subclinical hyperthyroidism) and I need an ultrasound of my thyroid. Also the Aspergillus mould levels in my blood are so high I need imaging on my lungs to check for damage there. I also need my next round of 40+ botox injections in my head and neck to keep the migraines at bay and an appointment with another mould specialist doctor. Unfortunately it's still cold and wet down there so we're going to try again to find a rental that is not water damaged (in the middle of a housing crisis.... wish us luck!).

I’d managed to put my business security system payments on hold for three months, along with my website, but now that hold time is finished, I have to go back to paying out the security contract for almost 2 years and continue to pay for my website hosting and associated business bills or completely close my business. A decision which has prompted this plea for help.

My business insurance is up for renewal as is my rego, CTP and insurance for a car that’s sitting over on the East Coast while I try and arrange to sell it from interstate. I’m falling deeper into debt because each fortnight I spend my entire centrelink pay on doctors bills, medications and treatments. Because CIRS is still being studied, it’s not yet fully recognised nor part of mainstream medicine which means that the tests aren’t run through medicare, medication is not subsidised and the cost of treatment falls completely on the patient. I’ve had to stop my psychology appointments as I can’t afford them anymore, as with my osteopath and remedial massage I used to get regularly to help manage the pain and tension in my body. Both my parents and Wes have spent thousands of dollars helping me through, but I don’t think it’s fair on them that they should also loose all their savings just because I’m sick.

I’m too sick to return to my previous field of work in hospitality, and even if I wasn’t too sick, the buildings where jobs are available would only make me sick because they’re water damaged. Because of this it would make sense to find work outside doing landscaping or simple garden maintenance, however one of the symptoms of CIRS is muscle weakness, so I’m currently no good to anyone as I can barely grip onto tools and even if I can grip them my hands occasionally give way without warning and I drop things which can be dangerous.

I’d love to start afresh and train in something else that would have me working outdoors in some other capacity, but some of the symptoms of CIRS are: difficulty assimilating knowledge, memory impairment and difficulty with concentration which makes retraining virtually impossible at the moment.

I tried working remotely doing social media marketing for an organisation but I was just too sick. What should have taken half an hour took an entire day which was frustrating and demoralising.

I think sticking to what I know and am good at (making jewellery and teaching jewellery workshops) is the best way forward, but I’m still too sick. My vision is too blurred from the mould and I often forget what I’m saying partway through saying it, and then there’s the dropping tools dilemma on top of the debilitating fatigue and migraines and the pain and all the rest. So I need to heal more before I can even contemplate getting my business back up and running.

Currently though, I'm severely depressed as I feel helpless in my situation and truly feel like there is no hope of a normal life for me in the future as I can’t even go into the majority of buildings without my symptoms flaring up.

Until the new car door cards and flooring arrive to remediate the car, I can’t even travel back down south for my next round of medical appointments and tests without getting sicker.

So as I mentioned, I’m at a fork in the road and clearly at a point of desperation which is why I’m reaching out and asking for your help.

I really need the financial stress alleviated asap so that I can focus on healing to even have a chance at rebuilding my life. I don’t know how long it will take to fully detox the mould mycotoxins from my system and heal, but it sure won’t happen quickly if I’m constantly feeling such high levels of stress.

If you can afford to help, even just a little, I’d be eternally grateful.

What you'd be helping me with:

My fundraising goal of $10,000 will help to support me financially until the new year.

I'd love to get my life back...

...and I'd love to share the joy of making jewellery with you once I'm better.