So many conditions. So little brain space.

Living with multiple chemical sensitivities overfills my brain. It’s enough to push an average Joe completely over the edge. Put into my brain my current life situation with my muscle disease, family, daughter’s illness, and there just isn’t much more room. The tiny spot that is left keeps being invaded by having chemical sensitivities.

What is it? Basically it is a body reacting to everything! Chemicals, gas, perfume, lotions, fabric softeners, nail polish, cleaners, smoke, et. I was diagnosed by an immunologist. I went to see her after I noticed certain things were affecting me. It started simply with someone hugging me and if they had perfume on I would get a small rash on my neck. I used to hug everyone. I started having to ask if they had perfume on before they hugged me. If I got a rash it stayed for days, itchy. I had enough reasons keeping me up at night. I didn’t need a rash. But then after I went out to dinner I would notice I got rashes on my legs from the chair I sat in. I finally realized I was having a reaction to detergents and fabric softeners from other people who sat there before me. That added new complications. How on earth could I go anywhere without sitting where someone else sat? I couldn’t. So I just took a shower when I got home and hoped I didn’t get a reaction. We picked my daughter up from school one day and she brought some art work in the car. I felt my throat was tight but had no idea why. I felt like I couldn’t breathe. I started choking and gagging. It was very scary. My husband pulled the car over and I stepped out gagging on the ground. We thought it may be the art so we put it in the trunk. I went to an immunology/ allergist a few weeks later and she gave me the diagnosis of chemical sensitivities and gave me an inhaler and an ipen just incase I had an anaphylactic reaction. She thought the paint or lacquer that was used in my daughter’s art work is what made me so sick that day.

My legs are constantly covered in hives, rashes, sores, spots. It is extremely frustrating. Knowing the reaction I could get I have had to become hyper vigilant. I will give you an example: My car had to go into the shop. This is what happened in my mind. These are the thoughts that consumed me with just the idea of the car going into the shop…..The last time the car went into the shop the car smelled of grease and the seatbelt smelled of men’s cologne. Then my husband got that on his clothing. Then that smell I could not get out. It took a few days of soaking his shirt, sitting it out in the sun to get the cologne out. Then the seatbelt had to be cleaned and that tires out my arms due to the muscle disease. Everything tires out my arms. Then my husband has to get a ride to the car. Everyone now has air freshners in their cars and those make me throw up. One more thing to have to get out of the laundry. Then if the car does smell like a chemical they use, then I cannot get into it until it airs out. How long will that take. If I can’t get in the car then I can’t go anywhere and I need to get out of the house…..These are all the things that happened in a few minute period just THINKING about the car going to the shop. This is what happens in my mind when thinking about being picked up for dinner…..Is the person driving going to remember how to drive me without hurting me? Is the person going to remember to take the air freshners out? will they remember not to wear perfume? when I get out to eat will they be able to help me with the bathroom door? will the actual place I am eating make me sick due to anyone near me with strong cologne or the cleaner they cleaned the table with or the person who sat in my seat before me? Do I need a back up plan for a ride home if they ignore any one of these things ?….

Can you imagine living like that? This kind of hyper vigilance has given my mind utter exhaustion. It causes great anxiety. Because I have no idea whether someone will care or respect this condition that I have. Most people don’t. They forget. Oops I forgot and put perfume on. So if they come to my home and sit on my furniture then I can never get away from it. I’m trapped in this house unable to drive, unable to do most of the cleaning, and stuck with someone else’s perfume and possible throwing up and rashes because of it. I wish I could turn off my mind. But I can’t afford to. Because If I don’t think about it then no one else will. Who else will think about the seatbelt and clean it? How long can my arms even go on doing what they are?

Really it is too much.

But there is absolutely nothing I can do about it. I have this. I live in a world full of fabric softeners and lotions and plug ins. They are everywhere. Not to mention cleaners and everyday things most people use around there homes that I cannot. Fertilizers, pesticides, bleach, are all on the make me vomit list.

So here I am. With all these conditions. Conditions I can do nothing about. One just makes the other harder to deal with. My brain is full. It has no space for anything else.

I was trying to correlate my illnesses earlier. The first things I was ever diagnosed with was  vulvadynia. That is a less than lovely diagnosis that involves inflammation of the opening of the vagina. I went to a special clinic that did a study on me. They used cancer treatment on the area to try and create fresh skin. That was one of the most excruciating things I have ever experience. Other than my wide awake muscle biopsy. The idea of that treatment is to blister the skin so much that it peals off and you get new fresh skin. For me the entire area swelled closed so I couldn’t urinate. I had to be rushed in and have the area torn apart and catheterized then. So that treatment didn’t work. So they cut the whole area out. My whole vagina was full of stitches. Both side were completely removed and sewn back up. The skin grew back just the same. All of that pain in the pursuit of health just ended in return of pain. That doctor was the most compassionate I have ever had. I got studied until I just couldn’t be studied anymore. I asked him if it was because of the molestation or rape that caused this. He said he did not know. He didn’t know if it was the nerve endings that were damaged or not. Either way just imagine having a burn on the opening of your vagina. Imagine sitting, riding a bike, wearing jeans. It is a freaking nightmare!

No one talks about it. Millions of women have this and no one talks about it. NO one talks about the hard things. They are ashamed, embarrassed, and why? I can’t help that I have this! Why be ashamed of something I cannot help? I can’t help the fact that chemicals make me feel like I could die. That is no exaggeration. It worries me the things that could happen if I am exposed to certain things. Women don’t talk about chemical sensitivities either. Because they aren’t believed. Told they are exaggerating. Told it is all in their head. Shoot I was told  my muscle condition was all in my head until I had the muscle biopsy and diagnosed with Central Core Disease.

After vulvadynia diagnosis was the muscle disease. I then was studied. I’ve been in many case studies for the muscle disease. No answers were found. No treatment. No cure. Then the bone disease, then Lyme disease., and finally chemical sensitivities. I tried to correlate them all and see how they were all connected but I find nothing. Neither do any doctors that I’ve seen. I just HAPPEN to have a LOT of conditions and diseases that are incredibly hard to live with. And YET I still find myself fortunate. It could be so much worse.

You’d think with all this to worry about I would never leave my house. But I do. At any point someone could hit our car and my bones would all break and my muscles would all tear. Just the gas fumes alone make me sick everytime I got out. But I still try. I try to live.

Some days are bad. Some days are overwhelming. I don’t have many people who I can talk to that will understand. Most have no idea what I am going through in my life because they are either too focused on themself or they just don’t want to engage in a discussion about my life. I rarely complain. I just sent a very long message to my friend about how overwhelmed I was today. That is rare. I mostly keep it all inside.

I try to live and not just go day to day and survive. I did that before. When I was being abused I just made it through each day and survived it. I sometimes slip back there again. It is an easy place to go. Survive. But not live. I make myself go out so I am making a choice to still live in spite of everything that makes me not want to.

I’ve made it through so much already.

What does it take to live and not just survive?

For me it is making sure I am not so overwhelmed in my brain that I’ve become numb. That the little space left in my brain that is not full of everything it takes to overcome life, is filled with tiny good things. It may only be me sitting outside for ten minutes watching the birds.

It is still a choice. To live. I don’t want to just survive. Some days are harder than others.

 

4 thoughts on “So many conditions. So little brain space.

  1. My heart goes out to you, Bethany. I suffer, among other things, from chronic hives. The cause is unknown. I use doxepin (an antidepressant) to control the frequency and severity of the hives, but carry an epinephrine pen for emergencies. I wonder if one or both would not be useful to you, as well. I am not, of course, a physician.

    Archbishop Fulton J. Sheen considered suffering a powerful spiritual tool. He wrote: “Only the wounded know how to bind up wounds…No suffering is wasted! As clouds carry rain over mountains, so your patience with cancer, your resignation to withered limbs, rebounds to some soul in Ceylon and helps a missionary in Seoul.” May God help you to bear with this cross.

    Like

    • That was absolutely beautiful! I will share that with my daughter as well. Im so sorry you suffer from hives. I am actually seeking out a new doctor that could try me on different treatments. Thank you for sharing the med, i will look it up! Always happy to hear new suggestions!

      Like

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