I found a wonderful Lyme literate doctor. I drove 450km somehow, as we manage to do when we know we are dying. I thought I had Lyme, before I got the mould tests back. Apparently Lyme and mould are similar, both poisoning by toxins. I had Lyme tests, I had HLA-DR DQ tests, I had MTHFR tests. ALL of these I researched myself as no doctors understood. My Lyme doctor, however, was a gem. He listened. We learned together. So far negative for Lyme, not susceptible to Lyme, but 100% susceptible to mould toxins. The mould results came back from the house testing. They were horrific.

Visible moulds appeared by year two, when they ate through the walls and the mould proof paint. A colourful array of colours and growths of stuff I had never seen before in my life. Public health refused to test, public health refused to test. So I did. Aspergillis: flavus, fumigates, niger, nidulans, tereus and versicolour; Cladosporium; Penicillum x at least three species; and Scedosprorum were the ones with a toxic rating as Hazard Class A. “These fungi or metabolites should not be present in occupied dwellings”.

Housing responded by sending in two “coyboys” to rip out the mould. They ignored their own report saying hazmat suits, and more. Outcome was everything in the house contaminated, contaminated bed on our back patio, and contaminated wall sheeting on our front verandah. Of course all this dragged through the house not bagged as recommended.
So I got sicker, I lived in a small caravan on my front verge.

Homeswest reported me for living in a caravan. Homeswest reported me for not mowing the back lawn. Homeswest refused to help, refused to move us, refused any compensation. When I had to leave in October last year, they continued to charge rent, for another six months. If I didn’t pay for a contaminated house, where they had already capped off the plumbing, they would dump my lovely solid marri furniture, and charge me $4,000 for doing so.

I lost $10,000 worth of furniture, all the soft furnishings. I have no bed, I got no compensation. My health is poor, thank god I am on disability pension now. I went from fully employed, to horrifically disabled from that contaminated house. Illegal build, no waterproofing, always wet. Proved all that. They repainted and put in more victims.

As for my health, wow! Get out of the mould people said. I felt I could not, how? No money, no furniture, nothing. Three months out from the horror house, I felt I would survive. I slept with friends, I slept in a park, homeless, but damn healthier. I regained my brain, and realized that advice was right. Homeless, on a park bench is wonderful, compared to chronic poisoning and paying for it.

I accidentally had a mould hit from a blanket from the contaminated house. 3 months sick again. 8 months out, I could no longer afford the $300 per fortnight rent out of my $850 pension, plus paying other accommodation. I had to put salvageable stuff in storage, and dump the rest. Sick for four months. By Christmas I was happy and nearly 80% again, mould hit, cleaning a dusty room in friends house. Two weeks sick, chronic diarrhea, and that horrific fatigue and mental fog. Every hit seems less, but serves to remind me, I am sick, be kind to myself.

What helped me leave finally? A Lyme literate doctor, who took the time to test different types of testing. B12 hydroxocobalamin injections daily (which I self inject) and allowed me to regain my brain, sleep again, and after a few months the joy of having an appetite. My hair has grown back, a flock of new hair that began growing the day I left that poisonous house. And shorter growth that shows each subsequent mould hit.

My diagnosis now? Sinus Tachycardia (heart races when I lay down), COPD (never smoked in my life), eardrum nerve damage (left eardrum just doesn’t work), eyesight problems, CFS/ME, and brain function short term memory and other issues. I have the Neuroquant, just need to find a doctor to interpret the results. I used to be a member of the high IQ society, Mensa International. I am now only smart enough to know damage has been done. My brain issues make it hard, tell me six numbers and I will remember the first three. I can not transcribe a telephone number accurately, my brain is a wee bit lost and muddled. Thank god my ability to research and analize is still workable, not as great as it was, but thank god I was able to research myself, and groups like this have saved my life. After being so deathly ill, I made a pact with the devil. I wanted to get well enough to enjoy one year. That year has passed, lets hope the devil has forgotten my agreement.

To go from asking my son to euthanize me in October 2017, to where I am now is a miracle. Thank god my son said he wants me to live, thank god he said get out of this place. Thank god I found a friend the day before, on line, who took me in. Some people are kind.

I thought CIRS Facebook groups would be helpful but quickly stopped checking them. Hearing other people’s concerns and frustrations with their CIRS journeys only made me less optimistic about my future and more paranoid about the present. This helped me realize I was too focused on CIRS and needed to find more balance in life.

One of the first steps I took towards creating some balance was not meticulously tracking everything. Every day for over a year I tracked every supplement I took and when, how I slept, what buildings I went into, the number and quality of my bowel movements and everything that could have possibly explained any discomfort I felt. Letting go of this constant monitoring reduced the impact of real stressors and eliminated a lot of the stressors I merely perceived to be real.

Giving up lifting weights and playing video games also helped. These were two of my favorite hobbies before developing CIRS but after becoming ill, they just made me feel worse. I had to find other ways to fill my time.

Because CIRS can be very difficult financially, I want to share some of the cheaper ways I found to fill my time that helped me relax and find balance.

Prior to getting sick, I never read, but now I read 10+ hours a week, all on Kindle. I avoid physical library books due to the high probability they will have spent time in a moldy home. I do take advantage of the Kindle rentals my library offers though. I also get a weekly email from BookBub.com. You pick genres or authors you like and they send you a curated list of eBooks that are on sale, usually priced around $1.99. Classic eBook Novels on Amazon is another good source for reading, most of these are free or $0.99. If you have Amazon Prime and pick the slower “no-rush” shipping option, Amazon will often reward you with a $1.00 credit for digital items.

I don’t just listen to podcast to learn about CIRS, there are hundreds of thousands of podcasts that cover topics you won’t find on TV or in other media formats. I love the NBA, so I listen to a lot of podcasts covering the sport, The Basketball Friends is my favorite.

Physical activity is hard at times but it is something I try to do everyday. Simply going for a walk outside can be incredibly calming and nourishing. I have gotten into Yoga since developing CIRS, “Yoga With Adriene” is a YouTube channel that offers amazing (free) videos, typically around 30 minutes in length. I originally had to break the sessions into chunks to complete them but have since developed the stamina to do almost all of her videos straight through. Shooting hoops in my backyard is also a calming way to have some fun and get out of the house

Working on projects I am passionate about goes a long way for me. Programming iOS apps keeps my mind focused and working on challenges I enjoy.

CIRS can be very isolating, when possible, getting together with friends always makes me feel better. Usually this means just sitting around and talking or playing cards. Risking the mold exposure makes going out hard but sitting outside at restaurants is a good way around this.

The Headspace meditation app and Annie Hopper’s DNRS (Dynamic Neural Retraining System) are good at-home things that work more directly on calming the mind. Talk therapy with a psychologist has also helped me find more peace. These are not as cheap as the others things mentioned but all three have moved the needle in the right direction for me.

I think educating yourself on CIRS is very important but maintaining a balanced and healthy perspective is also very important. Keep in mind that your capabilities will change over time – hopefully for the better – and try to find what works for you.

My right hip, I stared at it, as it felt as though someone was inside my body and took an iron and pressed it against my hip. Again I was bewildered but kept my composure. I tried to calm my worries by not letting it get to me. I realized that something was happening to my body without knowing what it was. I did not want to alarm my husband nor my family so I did not disclose this new symptom that my body was creating to what seemed to me a long list of symptoms. And told myself that if I went to a doctor that they would be unable to help and say that it was all part of my anxiety. Which eventually I did and was placed on some more anxiety medicines. I began to take amitriptyline along with Lexapro. Yet I was still experiencing all the neurological symptoms, and now these weird sensations in my skin that doctors said were caused by anxiety but were not being relieved by the prescriptions. This burning that permeated throughout my body internally was random and burned whenever and wherever.

Not long after that sensation, I began to experience yet another different type of being on fire. This one was a bit more complex, and for the longest time did not know how to explain it to my husband until I studied the symptoms of CIRS, but it was just as painful as the prior feeling. Just as the previous sensation, I experienced the ice picking pain burning and stinging me internally. I cannot remember the exact date, but I remember being in the kitchen washing dishes and suddenly feeling the sensation you get when you have been sitting out in freezing temperatures for hours, or when you have been holding ice too long. Internally, my pinky felt as though someone was holding ice to it and immediately the ice began to pick at my pinky causing it to burn and sting. The sensation lasted for about fifteen to twenty seconds.

Bewildered, I stood there trying to figure out what could have caused it and understand what was happening with my body. Before this, I had been speaking to my sisters about my neurological issues. They were adamantly searching for answers with me. During this time I was taking medicine for anxiety, Lexapro. This was doing wonders for my breathing and my chest pain. But had done nothing for my tingling, and dizziness. And now I had another symptom to worry about. This ice picking pain that burned and stung my pinky, fingers, legs, arms, and eventually every part of my body imaginable began to occur frequently. I can’t say how frequent but I can say it was enough during the day that it stopped me mid track during my everyday tasks until it subsided and I could go on.

From headaches that made me feel as if my head is on fire and sensations of every part of my body being burned to the ice picking pain that burns and stings my extremities, I go back and forth in this never-ending torture chamber that does not cease, and leaves me desiring nothing more than to be rid of it- no matter how. But strive to live no matter the pain. And the good days make it better. (more on Viridiana’s blog)