"Hidden" Chronic Illnessness

Or...

What to Do With Your Sick Loved One When They "Look Fine"....

Lately, I have been putting pieces together and slowly understanding what has been happening to me gradually over the last year and beyond. Crazy revelations and I am so thankful for more brain power to stand up for myself, read, research, and to find out what was wrong.

We experienced a newlywed nightmare: newlywed life abruptly interrupted with a health crisis and then being marooned and separated for four months! NOT fun or in the plan. But, there is a reason and Chris and I are growing and learning in amazing ways.

Here are some thoughts on my biotoxin journey as well as a few thoughts on how to reach out to others with illnesses you may not understand. I really hope this may help someone out there that is dealing with something like I am or someone trying to understand how to care for their sick loved one.

For the last two or so years I could not understand why I had so many limitations. I tried several times to get to the bottom of random sleepless weeks, sheer terror panic attacks for no visible reason, days of being completely flat out on my back, days of perfect normalness, brain fog, confusion- the kind that is there but not really there...so you have no idea you are really confused. The days and nights of unexplained pain, the doctor visits of just being told I am "stressed" or "depressed" or just have "anxiety". I knew there was something deeper, something physical, it was not that I was going mental (even though there were times where I felt like it)...there was a physical aspect that was causing imbalances everywhere.

Mainstream doctors tried to keep putting me on anti-depressant medications. They only acted as a band aid, covering up the issue that was most prominent and tricking my body into thinking things were ok. That led me to wear myself down by doing too much. Feeling like super woman one week and crashing the next. Some naturopaths caught the complexity of the deeper issue. One saw mold, toxins, and Lyme. The other saw Lyme, anxiety, and my major organs failing. Both helped build my major systems to a working point. But something kept undoing what we were trying to build up. There was a deeper issue. My body would not detox. I had no idea what to do with the "mold" thing that popped up.

But...my brain started to turn it's rusty wheels... 

For so many years I went through trying to go shopping in places and ending up sick. Holding out in warm bathrooms and spending the rest of the time in the car or on the curb outside the store. Desperately seeking a "safe place" to breath, to feel warm and safe.

I tried to desperately figure out why some of my favorite places would make me feel so sick: book stores, antique stores, historic buildings and museums, fabric shops, a few thrift stores, our church building, friend's and relative's houses, etc.. Same routines each time I entered one. I learned to speed shop through certain stores. The routine would be something like this: enter building, start just fine, feel a weird sense of being overwhelmed and then dread, start to feel cold, clammy, and my stomach would hurt. Some places caused dizziness, mental confusion, brain fog, headaches, feeling nauseous, feeling faint, and pain, just to list a few. Why? I was not afraid of anything there. It was not fear of anything. I was having a reaction to either: the building, something in the building, a chemical in the building, etc.

For years I have battled with knowing that I am smart and capable, but have limitations and trying to feel confident in that. Knowing most people around me do not understand and therefore think I am lazy, uninterested, sickly, weak, snobbish, dumb, etc etc. Most of the time I am just trying to survive. That is a medical fact and something I am not exaggerating on. There were moments where I actually have had to hold on with dear life.

I was born a preemie, a month early, at 4lbs. I was born a fighter for life, my middle name, Zoe, means life. Names have great impacts on a person. I am a fighter for life, truth, and a persistent fighter against ignorance. In my darkest times, I fought for life; I was and am not done yet. God was not finished with me, but has taken me close to the line. I have learned much there.

For most of my life I have found myself in situations that are different and not mainstream. Not going mainstream is the story of my life, so why should I be surprised that I ended up with an illness that is not talked about very much? Dealing with Lyme disease at an early age was another one. Watching the devastating effects it can do and experiencing the denial of most mainstream doctors. Seeing people suffer and left to find their own way and forge a remarkable path for fellow sufferers. I found my 12 year old self running the household while it took years for my mother to be finally diagnosed with Lyme and not laughed at by mainstream doctors and staff (and misunderstood by friends and family.)

For the last few years (especially this past year) I kept running into - "you look fine and act fine, there's nothing wrong with you" conversations and mindsets. I may "act" fine because I really don't want to talk about my pain at that time. I act fine because I try to have a normal life, a much as I can. I may look and act fine, but there are times where I know there is no possible way on earth that a particular person will listen or believe how I feel, so I don't waste the energy on them. Sounds harsh, I know. But, there are times where I just can't. But when I say that I am not fine, I am not fine.

Here are a few things I have been learning that may help others in the same boat.

"Don't let anyone ever tell you how you feel." That was some of the best advice I was given this past summer.  We can learn to listen to our bodies and know what we need. If we know, deep down, that there is something off, wrong, right, weird, good, etc...normally we are right. We are the only ones living inside our bodies. It takes some time and observation to learn to listen to your body. It also takes some basic knowledge of how our body works, but it can be done. We know our own limitations. No one else does. Unless they live with us and love us - then they cannot see when we reached our limit. No one can tell you how you feel. Other people may want to share their opinions on how you feel or how you should feel (or how they think you should feel), but they are often wrong.

When a person is ill, especially when an illness messes with one's brain chemistry, they feel so down. So when a person, either close to them or a stranger, questions the feelings or thoughts of the struggling person...it's pretty devastating. It takes tons of extra energy to not let it rip into your tired vulnerable heart. We need encouragement, not doubt. That's already rattling around in our weak brains. When we feel pushed or someone is trying to "help" us push our limitations, we feel so overwhelmed. We already want what the person is trying help us to do, but most of the time we are hitting a wall and no energy to deal with it. A nap, a day, a week later...possibly. But not always that moment. Illnesses are not endurance sports. The people dealing with chronic illness are just trying to take one day at a time, that's our version of endurance. It's not “no pain no gain” in one day- in some cases it takes years. Little by little. If we push ourselves too much, we spend weeks back several steps and in more pain. We know when to go and when to rest. Sometimes it's helpful to have a loved one gently suggest a short walk on a sunny day. We need suggestions like that. Little bites. If you suggest something more, it sounds like you are suggestion that we run a marathon...that very afternoon. Not cool. We answer, “sorry, I feel like I need to lay down.” We need that sun and little walk, but we are totally worn out by the mental picture of too much. Get to know your person super well, learn what will brighten their spirit and give them energy. Try to avoid overwhelming them with activities or people that will wear them down and suck the life out of them.

There are times when a chronically ill person or someone dealing with biotoxin illness (or something like it) feels like there is no hope. There are moments of despair and no desire to live. Trust me. The anxiety associated with biotoxin illness is horrific. Don't listen to anyone telling you "it's all in your head". This is something you or your caretaker should not mess with. This blog post on Mold Induced Anxiety was super helpful to my husband and me. As was Sleep Sanctuary.   Just knowing that I was not crazy, a hypochondriac or whatever was very freeing. Honestly, I cried when I read the anxiety article for the first time. He described my life. I no longer felt alone. 

So, if you are a caretaker or a loved one helping out....PROTECT your beloved. They cannot defend themselves from emotional and environmental influences when they are so sick. Shield them from people who hurt them or are toxic to them. Do not pressure them to try out buildings on bad days or any day for that matter. Learn to help, learn to learn alongside your person.  

That thought leads me to food and our diets. Food: most of us already know that food can be healing OR can cause major damage. Many illnesses and diseases can be caused or reversed by diet. Biotoxin illness (also known as Chronic Inflammatory Response Syndrome), Lyme disease and tons of other illnesses cause a lot of inflammation. Food choices can help in amazing ways with that. God has given us a treasure trove of wonderfully healing foods...if only we would take Him seriously about that! So, many chronic illness folks either choose or have no choice but to eat differently from the modern American diet. That does not make us weirdos. I could go into huge detail how just taking a break (and no, not for just one day) or going off entirely from certain standard American junk, can help heal one’s gut. It has been said that "all diseases begin in the gut". It's true. If we have a healthy gut, our whole body can fight all kinds of bad things in a very efficient way.

Don't laugh, don't tease, and don’t say you feel badly because we can't eat what you can. If you have a loved one in this situation, eat with them; eat what they eat without any kind of condemnation or teasing. It really means a lot. Maybe you will find you will feel better too. Reach out in loving practical ways. Again, learn with your loved one.

Speaking of which...research and educating ourselves are wonderful and helpful things to do. Most chronically ill folks know more about their illness than their mainstream doctor. We are fighters and want to know. Personally, I have always wanted to "know" and it drives me nuts and I am not satisfied with blindly following the crowd. Just like listening to a pastor or a lecture of some sort...we search the scriptures for truth so we are not deceived, check the resources of an article, or documentation of historical events or items. Same with the medical field. I am not saying we need to understand fully about the tiny details of the complexity of the illness on a cellular level. If you are up to it...it won't kill you. But I am saying...asking questions is a must. Ask doctors; why are you giving me this medication? What's in it? How will it help? Ask if there are ways to be more comfortable - detox bath, herbal teas, fresh vegetable juices, diet change, environmental changes, emotional changes, chiropractic care, massage, etc. Become informed. Learn what you are dealing with, learn about your options, and learn what you can do to help move things along. We should not play God, but God has given us resources, talents, knowledge, and a whole world with healthy plants and foods to nourish our bodies. We should not sit back in our overstuffed chair, twiddle our thumbs and say "well, God gave this to me so I am going to sit here and trust". Trusting is a huge element in this. We should totally trust God and accept where He is taking us.  But God also gave us the ability to do something. There are times when nothing can be done anymore, but we CAN try. We know, we understand, we are aware, we did something.  We trust and roll up our sleeves. We never really know what and who God is going to use.

So, we have the “ill” person doing all this research…while dealing with cognitive issues. Yeah. It does not work right away. We need advocates that will read for us at first, to us, then with us. We need an advocate that will fight for your life if needed. Someone to ask the questions for you, then with you. The patient will get to a point where they can read, research, and comprehend. But even then, they need their spouse, parent, child, friend, caretaker, etc to support them. To know what they know and be understood. A person who will stand up with and for their struggling loved one. It’s a huge relief emotionally and physically to have a loved one helping in that way.

My husband is a champion. He would have been my first choice to help nurse me back to health, but I was marooned in Pennsylvania and our home is in Utah. Plus, Captain (ok, First Officer) Amazing Husband had to work as well as find us a new place to live. After he found a wonderful place, he had to clean and pack our stuff, move our stuff, and then totally decontaminate our belongings and discard all paper, cardboard and packing materials etc. Our old place had a Murphy bed, so he slept on an air mattress until he got our mattress and bed. Our old place was too small for a couch and we had to get rid of our awesome vintage comfy chair. So no comfy place to sit. For two weeks he had no stove, the old one was being replaced. This man is a trooper. We spent hours on the phone. He spent each extra moment and days off cleaning our belongings and preparing for my return. Neither one of us wanted to risk me going backwards or worse. He fights for me and with me.

Contamination is a big deal. Think you cleaned up your moldy patch? Consider the airborne spores, spreading several feet across the room. This is complicated. This is frustrating. Remediation is serious business. Mix in chemicals from paint, housing materials, carpets, flooring, cleaning supplies, chemical covered furniture, etc. It’s so likely all of us have toxic chemical mixtures all around us. Not bothering your body you say? How do you know? None of us do at first. We get desensitized until our bodies give out. But simple symptoms give us clues. No, we cannot escape our toxic world. But we can create safe havens for ourselves, so our bodies can rest and repair. Bedrooms are super important. (See the Sleep article linked above)  We should do what we can within reason. But we should do something.

I am super thankful Chris and I decided to have a chemical free household from the start. Natural cleaners, bath soaps, chemical free food etc etc. but little did we know how far it goes. There is so much junk one has to look out for. It many ways we are saving tons of money, with a few initial larger investments.

My mother is also a champion in our personal story. She has been through each one of my relapses and knows what to do and what I need. She also is the queen of research and pushing through ignorant doctors. She gained that experience in her years dealing with Lyme. She understands the amazing blessing it is to have an advocate. To have extra eyes and ears, to listen to the needs of the patient. To know how to serve the patient and find what is best for them (not what she thinks or is her idea of what is best.) This woman should be awarded a PhD. She gave up her emptynestness for Chris and I. She sat up with me until the wee hours of the morning during the "night terrors" as we call them. Made me food. Drove me places. She has done so much. It hurt her to see husband and wife apart, but worked extra hard to help me get stronger so I could go back as soon as possible.

One more thought. If you are a friend of a person who is chronically ill, do not give up on your friend. I have seen this and experienced it. It looks a little like this – friend calls sick friend to invite them to do something, sick friend is unable because it’s a “bad day”. That happens several times or sick friend has to cancel because what they thought would be a good day turned out to be a bad day. After several of these times the non-sick friend starts to lose interest or invites sick friend’s good friends and leaves out sick friend “because they are always sick and never available”. Now, yes, it is frustrating for anyone to keep getting put off. But, please do not give up on your sick friend, there will be good days and hopefully at some point – a healthy friend instead of a sick one. But, in the meantime, keep inviting, send notes, bring flowers or snacks, make a meal, if they are able and have the energy – volunteer to sit with them and read with them. Bring a favorite movie over or something to bring joy to your sick friend’s heart. It’s a horrible feeling to feel forgotten or left behind. We do not choose to be sick, we want to get out and have fun. Most days we are so frustrated and discouraged by our illness and feel there will never be good days again. There are days when the phone is our mortal enemy that sucks out any energy we have. It’s not that we don’t want to talk with you, it’s the means to that end that is the trouble.

 So, before you give up on your sick friend….remember how they may feel and think of ways you could bless them. I can guarantee they would give the shirt off their back for you and are super anxious to get out there to bless others when they are able. 

So, in a nutshell. Learn, be aware, be or get an advocate that CARES, get tested, get data - the cold hard facts, eat dinner together, and never ever (as a care taker, spouse, friend, relative, even if it’s out of "love") mention money and how much it's going to cost. Remember- this is a life. Lives matter no matter what the cost. 

More thoughts and our story will be posted soon. In the mean time, check out our page Mold Illness Resources. There you will find a growing list of resources to educate yourself about mold illness and related illnesses.