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Learning to LIVE Post Mold Illness Diagnosis

by Catherine

Embracing Your “New Normal” May Be the Key to Letting Go of Fear and Feeling More Like Yourself Again

The longer I write this blog and build relationships within our community of readers, the more those interactions impact what I write about. Often your questions are at the forefront of my mind when I am writing my weekly post. Sometimes, I have even been writing about an entirely different topic but get such an excellent reader question, that I halt and reroute everything I am doing to share it instead. Then, on days like today, I just cannot ignore the feeling that I NEED to write about a topic, because it has impacted one of you and is weighing on my heart. This is one of those posts.

A reader who I have gotten to know through our email correspondence is about to embark on her first travel experience since being impacted by mold illness. Her home environment is finally under control, and she is feeling much better. (Her main symptom was debilitating and chronic fatigue.) These days, she is doing all of the “right” things with mold maintenance and mold avoidance and is extremely proactive about taking charge of her health.

This reader has also been very inspiring for me to communicate with—asking me detailed questions about cleaning methods and practices I use in our home and always thinking out-of-the-box to make products and techniques do double-duty to be more effective and cost efficient.  But, with her trip on the horizon, doubt, fear, and anxiety have started to impede her positive momentum. So much so that, rather than being able to focus on her current good health and upcoming travel, she is stuck worrying about all of the potential mold situations she may encounter along-the-way. She is already foreseeing challenges to remain well in new and unknown indoor environments.

To help her get ready for her trip, we have communicated in detail about products to pack, how she can purify her space and air on the airplane, and what mold maintenance and avoidance actions to take when she arrives at her destination. (If you want to read more about these techniques, HERE is my post on travel.) In other words, “on paper,” she is totally prepared and ready for this trip and knows exactly what to do.

So, why all of the doubt and anxiety?

To help you understand her perspective a little better, I will share an excerpt from her recent email to me:

Catherine,

 I think I’m struggling between/with trying to keep a clean, immediate environment…and remembering to live. This isn’t just with traveling, but with just being out and about and still trying to enjoy life. How would you say you still try to be you during and after your mold exposure? 

 Thank you, again.

Her email really made me stop and ponder my own post-mold situation and anxieties. I may portray myself as someone who has all of the “mold-free living” answers and who has fully recovered my health and my life, but I still have days that remind me of how sick I was just a few short years ago. I have come SO far, but I will never be exactly the same mentally or physically. Today, I am living my “new normal,” and I am ok with that.

I think that what holds many of us back from living the way we used to is what I like to call mold PTSD. This arises from not dealing with the emotional and psychological toll that our ordeals took on us. Things like losing our savings on remediation and treatments, losing relationships because mold illness is still not recognized in much of the medical community as a “real” sickness, losing our jobs from too many sick days, and much, much more characterize the darkest days of our illness for us. Because all of those memories are very negative, stressful, and anxiety inducing, we avoid those thoughts altogether. So, when we are faced with situations that are going to be out of our control, like this reader is facing here, and the potential of getting sick again rears its ugly head, all of those fears, anxieties, and stress come flooding back.

In this reader’s case, she is still a young woman with a LOT of life ahead of her. Unfortunately, because of mold, she now has to take more precautions in her daily life than the average person to not get sick again. That is a ton of stress for anyone to handle. But, for some, mold PTSD can be so traumatic, that even though their body has recovered, there still exists no life for them outside of cleaning for mold and mold avoidance. Thus, the person remains isolated and, in a sense, still sick. I don’t want this for this reader, for myself or my family, nor do I think that “living” this way is healthy for anyone. Thus, I really wanted to share my thoughts and answer her question on the more public forum of the blog.

Below is my very personal response to her. I pretty much put it all out there, so if you are not a fan of TMI, stop reading here. For those of you willing to dive deep, here we go:

How do I still manage to LIVE post mold exposure? And, is it possible to ever truly feel like yourself again once mold illness is a part of your story?

This is a hard one: you will get there. I think that you should feel very empowered by all you are doing for your health. Most people do not make the effort you are already making just to get their lives back. Unfortunately for mold and environmental illness sufferers there isn’t a magic pill or treatment that will heal us. It takes time and lot of continuous effort to get and to stay well. There are days I feel like cleaning for mold and mold avoidance are all I do. It can be easy to lose my identity in the activity of it all.

 I don’t pretend to know all of the answers, but what I can offer is my experience, and I feel like there are a number of things at play that when better understood, may help you to feel a little more like your old self again.  

 First, there is the new space you are in right now, the being “well” space. I regret to say that I have experienced some unfortunate backlash from the mold community since starting this blog.  Writing about being “well” (or finding my “new normal”) and telling my story doesn’t sit well with some people. There are people who think you must’ve not been THAT sick, if recovery is part of your story. That is sad to me, because the bottom line is, if you are made sick by mold or any toxin in your environment, you have to live differently from then on out. It doesn’t mean that you don’t go places or that you don’t experience life, it just means that you may do it differently from the average person. Just because I am no longer isolating myself or my family doesn’t mean that I no longer feel that mold could harm our health. It means that I am choosing not to allow our mold experience to scare us out of living. We take precautions and operate with the knowledge that we might have to excuse ourselves from certain environments, or have to pack some extra products to help us during travel, or spend more on supplements and preventative treatments than others. But, we happily do these things, because they ALLOW us to live healthy lives again. So, the simple fact of not feeling like I fit in with either the “sick” side of mold illness or the totally “back-to-normal” side of things also robs me of my identity a bit.

 Another side of living post mold that makes things hard is the fact that our medical system mostly focuses on acute care and disease treatment, rather than preventative care and health education. Most of us had to chart our own paths to recovery, sometimes going against medical advice to find the cause of our sickness. In being a “rebel” and in looking at and treating our environments, we are sometimes labelled hypochondriacs or crazy. We are not usually praised for our tireless efforts to figure things out and to get well, not accepting that our lives are meant to end in debilitating sickness and malaise. Those negative opinions are hard to ignore. It is sometimes easier not to do some of our mold maintenance routines or to stay in a moldy building, rather than leave abruptly or explain our behaviors yet again. I still feel the need apologize for using my mold wipes or burning EC3 Candles when staying with a relative. I have to remind myself that if I were taking an insulin shot to control my diabetes, no one would think I was crazy. They would accept that I was taking care of my health. My health routines regarding mold shouldn’t be different, because it is in doing these things that I can stay well and LIVE.

 Getting to a place where there is balance does not happen overnight. It will get easier as you learn about your body in recovery. I found that learning to deal with anxiety was also a helpful step that you may also consider addressing at some point. There is Dynamic Neural Retraining (DNRS) that many mold patients find helpful. Many chronic illness patients find it life changing. (Note: If there is interest about this topic, please let me know. I would be happy to do a post on it.) Also there is the concept of neuroplasticity as it relates to patterns—good or bad—in the brain, and our ability to alter those patterns to make our brains work for us a little bit better.

 Neuroplasticity says that you can actually strengthen areas in your brain by actively calling on them and using them more. I put this into practice by continually dismissing anxious thoughts about mold, and replacing those thoughts with effective mold maintenance, mold avoidance, and treatment knowledge instead. As a result, I gained more confidence in my recovery and experience less of the mold-related anxiety. In other words, the activity of learning effective mold maintenance or wellness techniques, created a larger brain pathway to that knowledge, and in the end, gave me an increased ability to access that knowledge. In my opinion, this is good news for us “moldys,” because it addresses the mold PTSD (trauma, embarrassment, and anxiety from our condition) and actively redirects our thoughts to positive pathways that help us to live and feel like ourselves again.

 I guess what I am trying to say here is that by doing the things that you KNOW make you feel better and that you KNOW work against mold, like cold-fogging with the EC3 and using the EC3 Laundry Additive with the Borax, and by increasing your confidence in your abilities to handle your situation, you are also creating positive thought patterns that move you away from the anxiety and move you towards a place of renewed happiness and life. I am not saying to get caught up in toiling and constantly worrying about mold. I am saying to create patterns and actions in your life that work for you and keep you well. This is a process and freedom will come with time, of course. 

 Relationships and connections with others are another thing that will keep you well and help you give yourself permission to live. I isolated myself and my family for an entire year after we “got the mold out” of our lives. It wasn’t intentional. I was just a Momma Bear trying to gather my cubs around me and make sure nothing was going to get to them. I’ll admit that I was motivated by fear in most of my actions. Thank God for my husband who is the most grounded voice of reason in the room. He wasn’t always patient with me, but he was able to deliver some truth in loving (and sometimes harsh) ways to me that helped me to slowly loosen my reigns and get back to life. 

 Before I end this long-winded reply, I’ll let you in on a helpful exercise:

 If you find yourself shutting down and becoming consumed with cleaning and avoiding possible mold situations, ask yourself the question, “What is the biggest fear holding me back from living my life?”

 I asked this to myself the other day. I am sad to admit this, but, for me, it was still money. The financial stress and burden of overhauling our lives and losing everything and possibly not having a home at all, still scares me. If we had to repeat the remediation and the doctors, I don’t know if we could handle it.

 I took that fear and discomfort and I sat with it. When I thought about the actuality of the situation, I realized that no matter how scared I was about running out of money at the time, we had to deal with the situation and we had to get well. Period. Thinking about the alternative was a lot scarier than thinking about running out of money–with the alternative, we would have stayed in the mold and had a steady decline. In other words, if we had not spent the money, we would still be sick. Thus, we would literally have nothing right now. It sounds morbid as I describe it, but it was actually so empowering, because I felt my fears sift and the weight lift.

 That activity helped bring me closer to a place where my money fears no longer control my decision-making about our health—to do what we need and go from there. We have had to make many sacrifices and have had to take on extra work to deal with things, but finances are evening out, and as we get better and better, we can do more and more to lift the financial burden.

 So, in closing, my advice is to ask yourself some hard questions about what would happen if you were out living life and encountered mold? Then what? I bet you’ll see that you have some pretty solid answers and modes of action now. And, if your health did suffer, now you know the culprit (MOLD) and can treat it, right?

 I hope in some small way that I have answered your very pertinent and important question.

 Sincerely,

Catherine

Are there helpful practices you now employ that help you in your emotional and mental recovery from mold illness? Do you feel you are truly able to live? I would love to hear from you.
If you have a question about this post or would like to see me cover a specific topic on the blog, please comment here or write to me at catherine@moldfreeliving.com.
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4 comments

Beverly Cook August 6, 2018 - 2:00 pm

Can’t thank you enough, Catherine, for your interest in and dedication to helping those of us also stricken by toxic mold poisoning to pick up the pieces of our shattered lives and learn how to live safe, healthy, and happy lives once again! Hugs!

Reply
Catherine August 7, 2018 - 8:24 pm

Thank you so much! I really appreciate all of your support. Means the world to me.

Reply
Beverly Cook August 3, 2018 - 12:10 pm

Hi Catherine,
Would you discuss recommendations for HVAC/Dehumidifying systems for the whole house? And what you found to be the most important new house building materials to avoid and why? Thanks!

Reply
Catherine August 4, 2018 - 7:16 pm

Hi, Beverly,
Next week’s post is going to be all about building a mold-safe, healthy home. I love this topic and think the information will help anyone building or renovating their current home, especially when chemical sensitivity and environmental illness are part of the equation. I will include sections on general construction, HVAC, interior design, landscaping and grading and even a bells and whistles section for things that go above and beyond to make a healthy sanctuary. In the meantime, the big materials to avoid are particle board, carpet (no wall-to-wall anywhere), fiberglass, and adhesives containing formaldehyde. I like the Trane HVAC systems and the Aprilaire and Honeywell Whole Home Dehumidification systems. I will include more details and explanations in the post. Stay tuned!

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