Things were going along pretty well with my treatment for mold illness (officially known as Chronic Inflammatory Response Syndrome, or CIRS). Under my doctor’s supervision, I had been following the step-by-step treatment plan developed by Dr. Ritchie Shoemaker, a pioneer in the treatment of CIRS.
It’s a fourteen step plan, and I had battled my way to step 13. It was grueling and brutal at times, but along the way, I began to gradually feel better. My resilience improved, my fatigue decreased, and so did my anxiety. My terribly debilitating brain fog lifted, and I was beginning to feel like a real person again. And more important than any symptom that improved, I became much more interested in engaging in life. Most notably, my normal personality returned (it’s hard to be cheerful and engaged and funny when you feel like crap).
Well, right this moment, my personality is back in the lost and found, along with many of the other improvements noted above. Here’s the situation. Mold is literally everywhere. By many estimates, at least half the buildings in the US are moldy. As you’ll recall, my immune system is disinclined to deal with mold, so avoiding it is mission critical for me. It’s like avoiding a food you are severely allergic to. But it’s more complicated with mold, because unlike a peanut you can see, touch and feel, mold is often invisible, and does not always give off an odor.
For that reason, we are vigilant about keeping our home mold safe. That means air purifiers in every room, mold killing UV lights in the HVAC vents, routine mold testing, keeping the humidity level below 50% and constant vigilance in terms of looking for any signs of water damage, which can lead to mold.
Because of Covid I spent more time than usual in this very safe environment, which is likely the reason I was able to make so much progress. Then I got vaccinated, the country opened up, and I began traveling and spending more time outside my mold-safe cocoon. And I bet you can guess what came next. Yep. Accidental mold exposure.
The exposure led to the reappearance of a difficult to treat mold colony in my nasal passages. It’s called MARCoNS, and it’s treated with prescription nasal spray, which I don’t tolerate. One spray and I’m Man Down. So, the next step down is an over the counter nasal spray, which I also don’t tolerate. Man Down again. The next step down after that is a nasal spray called Xlear, which is basically stevia. (Don’t ask me why it works. I have no idea. I just do as I’m told).
The last time I had MARCoNS, I was able to eradicate it by doing 8 sprays of Xlear per day for several months. I tolerated it just fine, and was happy to be able to avoid the Man Down situation of the big guns.
So, when my doctor told me I had MARCoNS again, I wasn’t too upset. Sure, it was a setback, but weirdly, it was also a relief. I’d been having concerning symptoms (difficulty concentrating, problems assimilating new information, bursts of anger, increasing fatigue) that are all associated with CIRS, so I was honestly happy to have an explanation for what was going on. Plus, I figured it would be a breeze to deal with it since I tolerated Xlear.
Well, apparently, that was then and this is now. And now, I am seriously Man Down from one freaking spray of what is basically stevia. It doesn’t even seem possible, does it? It’s impossible for me to describe what it feels like, but consider this. I have been sick for nearly 12 years. That’s 12 years of playing hurt. I know how to power through. But the way I feel from one spay of Xlear is un-power-though-able. It’s like my entire body goes off line. I can’t think straight, I feel extremely sick, it even feels like my blood hurts. I know that sounds strange, but it’s the only way I can think of to describe the systemic anguish I feel. And I basically lose my will to live. No, don’t confuse that with being suicidal. It’s not that. It’s a general feeling of I-just-can’t-function-and-I-can’t-muster-the-energy-to-even-try. I hope you never feel this way.
As I write, I’m in a tough place. Throughout my illness, I’ve worked hard to keep things in perspective, to look for the learning in the suffering, and generally maintain a positive attitude. But every now and then I basically lose my shit, and this is one of those times. I’m tired. I’m sick of watching life from the sidelines. I’m overwhelmed by how wrecked I get from basically being in the same room as the medication that’s supposed to be healing me.
In these moments, it’s hard to see the path forward. It’s impossible not to feel hopeless. And helpless. Seriously, what is up with my body that I get so addled from so little? This is the thought that haunts me.
My doctor says my immune system is out of whack due to CIRS, and that’s what this is about. My immune system grossly overreacting to provocation. I guess that explains things, but it’s hardly a comforting thought.
I try not to get lost in these dark, helpless thoughts, but I’m human, and I’m suffering, and I’m tired of fighting so hard to get back in the game.
I know I will pick myself up. I always do. And I know my doctor will figure out some way to help me. He always does. But in the meantime, I’m giving myself a moment to just feel my feelings as they come. Not some sanitized, spun, politically correct version of my feelings. No. My actual feelings. Despair. Helplessness. Hopelessness. Self-pity. Anger. Frustration.
I want to scream right now.
I’ve been in this movie long enough to know that allowing myself to feel what I feel is imperative for getting back on track to a more positive place. It’s perhaps one of the most important lessons I’ve learned throughout this trial.
For me, the key is to not get stuck in the darker emotions. I don’t have a hard and fast rule for how long I get to wallow, but I definitely put an expiration date on the whole situation. This is where the word AND comes into play. I realize I can feel frustrated, angry, hopeless, etc. AND remind myself it could be so much worse. I realize I can be overwhelmed with the process of getting well AND remind myself of how much progress I’ve made. In this way, I honor and validate my feelings while also coaching myself into a more productive place. For me, one doesn’t work without the other. I can’t pretend this whole situation doesn’t blow. Because it does. But I can also understand how fortunate I am. Yes, I am struggling, but yes, I have the arsenal to put up a darn good fight.
Which is what I’m doing right now. Fighting when I can, resting when I can’t. Holding on to the deep faith this is happening because there is still more for me to learn.