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Navigating Living with a Chronic Illness, Hope and Recovery

I lived with a mysterious illness for many years, every few months l would get sick, then I would recover for a few weeks and the cycle would begin again. I saw multiple doctors, kinesiologists, and naturopaths, none of them could find out what was wrong with me.

So you start to think, Is this in my head? Is it psychosomatic? Then you wonder if what you really need is a therapist! Well, I had one of those too! In fact, I was told by one practitioner that I wanted to be sick which was why I kept getting sick. I was choosing to be sick. That’s a hard pill to swallow.

My symptoms were weird, left eye infection, fatigue, anxiety (even more prevalent than my usual high-functioning anxiety), extreme dehydration (like being hungover constantly but without the fun of actually having a drink), creaking bones, lethargy, irritability (yes more than my usual irritability) and hormones all over the shot.

As I said they would just keep recurring every few months, my immune system was so depleted, and I’m a health coach, (yes isn’t it ironic Alanis) So I’m eating healthy, doing yoga, walking, meditating (sporadically) and yet still I’m getting sick! Argh!

Thankfully in some messed up way, I started to get continually sick and started struggling to get out of bed. A dear friend, who I’ll be internally grateful to, came to my rescue.

She came over to see me, in my bedroom, I was bedridden at this stage and she was convinced I had mould poisoning. Conveniently, she was a mould remediator, so if anyone knew about this green black brown shit she did.

She started looking around my bedroom and hey presto she sniffed it out! Mould was hidden everywhere, in my cupboards, side tables, blinds, mattress (yuk) and this was just in my bedroom.

The thing about mould is it can hide, we had thought we might have issues with mould but we couldn’t find it. We thought stains on our mattress were sweat, and markings on the cupboards were wood markings. It disguises itself very well. Clever sucker!

Our rental home was old but beautiful, it had been our home for 12 years. Over the years there had been water damage in the roof, which had been patched up by the landlord (multiple bodge jobs) and then relentless storms and humidity kept feeding Mr Mould.

So the journey began…… the remediation team came in the next day and we were told to move out immediately, the house was not safe to live in! Tests came back and it was everywhere, under floors, my home office, kid’s bedrooms, in the walls, carpets, furniture…. Everywhere!


So now we were making progress, it was time for me to see a doctor and start getting tested. This in itself is an overwhelming task as most doctors have no clue about mould. So you have to find a specialist integrative doctor, who has huge wait lists. You then spend thousands on tests (which are not bulk billed or rebatable), some of which are not even that reliable (hint: best one is urine test) and then you wait.

I love my husband, but (yes there is a but) he really struggled to believe I was sick from mould, he thought it was in my head (yes this made me very angry towards him) and it was only when we got test results back that confirmed I had been poisoned, that I had the gene that meant I was mould sensitive and could not get rid of mould out of my body, and that I had a chronic illness from it (CIRS). He finally believed me and felt awful for previously not.

My youngest son also had the gene and had weird symptoms for years, different in kids, sores on his face, fatigue, tummy upset and struggling to concentrate in school (worse than usual). My husband and oldest did not have the gene and were fine. This is what complicates it, if not all people living in the home are sick, you don’t think your home is making you ill.

It’s not unusual for women to suffer more with this and for men to not believe them, it causes significant trauma to relationships. And mould rage is a real thing.. so watch out, us mouldies can lose it when we don’t feel supported!

We were homeless for a while, living in a Meriton apartment for months but we made the best of it! It was an adventure. We lost all our belongings, our whole house contents were written off, our home, irreplaceable photos and baby books, and I wasn’t sure if I would ever be well again.

My health was so precarious, I was really sick and frightened. Luckily, I had an incredible naturopath who was also a Counsellor and pretty much saved my life! I went into some dark places, depression, desperation, wondering if I would ever get better.

She had been through mould issues as well so she got it, she listened and supported me through it all. I started taking supplements and went on a protocol, which helped a bit but I finally made the decision to take a pharmaceutical drug, CSM, a binder to really rid my body of it. I struggled at first taking it, but my body adjusted over time.

It was 12 months of hardcore detoxing, holy moly, nothing prepares you for it, extreme food restrictions, no alcohol, no gluten, no foods with any natural sugar in, no dairy, no fun haha

This sparked curiosity about my relationship with alcohol, I had to become comfortable being around other people drinking around me, and relearn how to be myself without the influence of booze and I began to love it, I felt like myself for the first time in years (this is another blog, my next one).

Your body goes into an inflammatory shock when you are exposed to mould, and your nervous system goes into survival mode, so you have to reduce it down any way you can. You come to a place of acceptance that you will be susceptible to inflammation flare-ups for the rest of your life when living with CIRS. So avoiding triggers is key but also really hard, for example, stress is one, which is hard when you have a teenager Haha .. funny not funny

But what’s worse than mould is FEAR – this is the biggest battle you have to conquer. The fear of being moulded. I lived like this for years, scared to go to places, shopping centres, holidays, friend’s houses, in case they have mould there.

This led me to coin the term PTMD – Post Traumatic Mould Disorder – yep it’s a real thing! It’s completely and utterly traumatising. It splits you in two, shakes you up and spits you out. But you know, we survive and we can beat it.

I felt hopeless, scared, unsafe and vulnerable.. and alone at times. I’m so grateful for the toxic mould Australia’s FB page as I felt part of something, and understood. People were worse off than me, this gave me perspective and some were better off which gave me hope.

And this blog is about HOPE.

We can get better, we can break through fear, kick it to the kerb, find peace and start living life again.

There is always HOPE. If we adopt a Hope mindset and believe things can get better. Knowing we have the resources and determination to push through adversity with the right mindset, support and steps in place.

I’m now fearless about mould, trusting in my body and its ability to heal itself. But I am human, not a robot (yet), so I can still revert back to old patterns and ways of thinking. I still get moulded from time to time but I know what to do and I’ve learnt to manage the inner chatter that goes on, I have to have a serious word with myself to comfort and soothe my nervous system back to a place of safety.

I still suffer ongoing health issues which I manage when they come up, sometimes it gets me down but I’ve learnt to accept it’s the way it is living with a chronic illness.

I wrote this blog to raise awareness about mould, and to give people hope for recovery.  I have someone reach out to me pretty much every week for help, people often don’t know where to start, it’s incredibly overwhelming with very little support from the medical profession.

If my story resonates with you, if you’re living with a chronic illness or have had issues with mould and you would like help and guidance, then please reach out, I’m here to help x

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