Living with mold illness: What It’s Really Like to Live With Mold Illness and CIRS (Chronic Inflammatory Response Syndrome.)
This is an excerpt from my daily journal. I record voice notes while things are happening, then put them together with the notes I write each day.
From these experiences, I hope I can help others — and find those who are going through a similar kind of hell to myself.
Noise Triggers: Why Loud Sounds Cause Instant Anxiety When Living with Mold Illness
I am in a constant state of fight or flight. This is no fun. It’s been three years now.
I’ve gone from Mr. Cool and calm to Mr. Scared and anxious.
Today has been the first time out of the apartment for almost a week. From the minute I left the door it’s been a problem.
As soon as I reached the elevator in the apartment building I was introduced to the noisy dog that barks and keeps me awake all night. It was in the elevator with its owner, barking wildly and angrily, gnashing its teeth.
It freaked me out. Loud noises do that now. I used to be a raver. I loved noise. Now it scares me.
The noise combined with strong perfume worn by the dog’s owner increased my migraine and anxiety from a 5 to a 7. I stood at the elevator door, frozen in fear.
Once the elevator was on its way down I let out my frustration by shouting: Is that the little c**t that keeps me awake all night?
That comment had to be purged from my body. But it had to fall on no ears. I’m in no state for confrontation right now. I look visibly weak and shaky, and I feel it.
I have become a target, as I look visibly weak and vulnerable.
Why Living with Mold Illness Turns Everyday Tasks Into Survival Missions
I was on my way to the mall. I’m selling an old laptop for less than it’s worth. But hey, I’m a foreigner in this land so I’m always going to get ripped off no matter what.
I’m going to meet the buyer at the mall. I want to be in a public place as I don’t want strangers coming to my door. I’m too paranoid and scared for that.
I don’t really feel safe in this country. I haven’t from the day I arrived.
The man that came to collect the laptop was one of those gym bros. Muscly, tattooed, rough looking. He started jabbering some shit about bank transfers to which I demanded cash. Then he made a phone call to a friend. This made me nervous.
I got a little erratic. I took the laptop and put it back in my bag. I placed the bag by my side away from the table so it could not be snatched. I picked up my brick-like smartphone and was ready, just in case things went south. A brick-like smartphone was the best weapon I had.
But hey, I’m in a state of fight or flight. I’ve been here for three years and I’m always ready to fight. It’s just a shame that I’m so weak and skinny now that I wouldn’t last five seconds.
The gym bro laptop buyer is a big guy. I resent him as he bargained me down on price. But I am desperate, and I just want this over fast. That way I don’t have to interact with more people.
The muscly tattooed man went to the ATM and came back with cash. While he was gone I had a bad feeling and came close to running away. But I talked myself into staying. I reminded myself of all the fucked up situations I have been in, and how I never panicked. I always survived and came away with a story I could tell with humor and style.
He came back with cash and counted it on the table in front of me. I took it, gave him the laptop, and got out as quick as I possibly could. Paranoid along the way that the money might be counterfeit.
Finding Small Joys: Gluten-Free Chocolate and CIRS Diet Restrictions
I went to the supermarket. They have gluten-free chocolate, 85% cocoa and sugar-free. This is my treat every week. This is the one joy that remains in my life.
The mold destroyed my gut and made me allergic to most foods. But this is my treat. It has become sacred and special.
I am crossing the street. The woman with strong perfume stands on my shoulder. I quickly move away. Only the scent has already greeted my nose with a handshake and an increase in migraine.
My anxiety spikes a little more. My chest feels tight, the light changes, and I quickly cross.
It’s hot as hell right now. It’s August. It’s the highest point of summer. Everybody’s wearing strong deodorants and perfumes.
The scents set me on edge. They make my heart race. I consider myself allergic to people. Why not? I am allergic to everything else.
Just the smell of other people makes me anxious. I used to love people, now I hate them. Their odours hurt me. I know it’s not their fault, but still.
My heart starts beating like crazy. My ears ring and my migraines increase.
I am walking through a big group of people smoking and talking at the bakery. The concoction of smells is too much. I want to be back at my home.
I have a funny feeling it might be some old lady’s cheap perfume that provided the final shock that shatters my broken and damaged heart.
Living with Mold Illness When the Stress never Stops
I’m on my way to the bank now. I need to pay my rent.
It’s already two days late and I’m dragging it out because I really don’t want to be here. I have no other option. I don’t have enough money to escape.
I just have enough money to tread water for the next few months and hope something miraculous happens. That is if I survive the next two months.
Last night made me nervous. I could feel my heart struggling to pump blood around my body. But as you can read here. What do you do when you are alergic to the hospital?
As I’ve been told repeatedly, by the few doctors that would listen it’s the stress that will kill me.
How can you not be stressed when you live your life in a state of permanent anxiety locked in this state of fight or flight?
Every person I encounter seems to set me off. Every situation makes me stressed.
My rapidly depleting bank account is adding even more stress to the situation. And the fact that everything I try to obtain work ends in failure just compounds this.
The only time my brain switches off is when I’m unconscious, and at that point I’m breathing toxic fumes from where I sleep.
So there truly is no time of relaxation. No real escape.
Some nights I am lucky. I can sit on the balcony for an hour. But then they start smoking from below and above. That smell hurts me now. So I retreat indoors. The smoke follows me so I sit in the bathroom. It’s dark and cool in there. I would live there if I could.
These are my days, rinse and repeat. Alone with no conversation. It has been two months now since my last social encounter—that wonderful coffee at the outside coffee shop with the nice lady letting agent. The day I moved in.
It’s just another day. The same as the one before. Locked in a state of fight or flight.
In CIRS. hell. living with mold disease. This is not a disease, it’s a curse.
That’s all for now. I’ve made it to the bank. Time to pay that damn rent and go back to my off-gassing little glue box on the sixth floor.
Author’s Note
I recorded this on my phone’s voice recorder. I started recording as I left the mall and kept it running until I entered the bank. I then transcribed it using AI. After that, I tidied up a few transcription errors and formatted it into this post.
Throughout my journey I have been both writing and recording. I would like to publish my entire story. It will not be in the correct order, but I will publish what has happened and what is happening.
Right now, I am alone and very isolated in Tbilisi, Georgia. My aim is to get to Mexico, where the climate is dry and I will be close enough to the US to see a doctor — hopefully, finally, to get the help I am so desperate to find.
If you suffer from CIRS, please reach out. I am alone, and I will help you in any way I can.
If you can support my work, I am still figuring out how best to do this. For now, you can share my story — and if you’d like, you can buy me a coffee. Every coffee goes straight to my escape fund and medical treatment.
Thank you for reading. Please comment — it makes me feel less alone.
