Sinking Ship

As usual, I'm writing because I feel desperate. I can't well summarize all that's happened since I last wrote. I'm just sharing the latest preoccupations that have been bothering me.

Feeling the overwhelm and impossibility of life and future. I have fragments of a life I would like to keep, but I don't know how to hold onto it. It keeps slipping away from me, getting harder and harder to hold onto. My home and quality of life are a sinking ship.

Practical issues:

-The upstairs scent that started January 13 and seeps in strongest into the bedroom. As soon as I had figured out the damage the heat was doing to me, there was barely a break before this issue arose. The air purifier doesn't seem to be sufficient, even in the bedroom (smaller airspace to control). The scent is so strong in there that it builds up over time, even with my best purifier. All of this leading to needing to open the windows often. But the outdoor air is often not safe and is way too cold. But I have no other option when I'm trapped with that scent. I no longer have a safe bedroom, my one safe place in the world, contributing to the ever-growing sense of unsafety in my world. I was down to one safe room, and now I don't have that.

-My bedroom is the only reason I survived the summer. My escape from all the seeping scents. That escape no longer exists due to whatever new scent is being used, presumably coming from above, since it shares no walls with any neighbors, making it more insulated. I cannot survive a summer without the safety in that room. That means that this spring should be my last here in this home.

-The living room air quality is now more tolerable much of the time in the winter, but very difficult to heat with space heaters. The space heaters are overwhelming our electric system, contributing even more to the sinking ship feeling. When the living room fuse blows, I can't fix it myself, leaving me without power and helpless. I can't warm my space. I can't turn on lights. I can't run the microwave/tv/dehumidifier along with the heaters and purifier. And this is all before bringing in the bigger purifier that I am still waiting on. That will use more power. I can only hope that it will allow me to open the windows less, and then I will just give up on heat. But that scent is so much to overcome without ventilation.

-Access to fresh air brings me back to life, brings me calm, brings me peace, brings me energy, brings me coherence, lessens my pain. It proves to me that buried underneath everything, I'm still me in here. But it is not available most of the time and so rarely fresh enough.

-CVS Refill BS-- Causing me so much unnecessary stress. Not even worth sharing in detail. Just absolutely inept people doing their job poorly and making my life so much harder.

-Glasses prescription BS-- I will be going back into the building that harmed me so badly last year. I cannot imagine how I will make myself do it or if I even should. But I feel like I see worse all the time. But how long will it even be before my vision changes again? How long will these glasses last? I've already waited almost a year since the first vision change. When will the left eye change? And how will I go about dealing with that?

-The shower leak is an ongoing and progressive issue. The moldy smell after showers keeps getting stronger. I am not sure how much longer I'll be able to use this shower. I already don't go in there more than I have to. I brush my teeth in the kitchen to avoid time in the bathroom. The mold issue is surely contributing to my progression, although fixing the plumbing leak will not undo the spreading mold damage in there. More sinking ship feeling.

-I will sometime get my computer repair done. I don't want to send my PC away and risk having it coming back scented. But it will get done.

-There is the ACT (Acceptance and Commitment Therapy) clinical trial, although at this point, therapy is feeling more like a luxury than a necessity. I'm already accepting a whole lot of shit about my situation. I'm not sure I have time and energy to devote toward accepting it "better."

My body is part of the sinking ship as well. Degeneration on all sides. My back pain that was made so much worse by a simple exercise is one of the latest examples of this. And that back pain is a result of my fusion causing me to overuse lower parts of my spine, making it unstable. And since then, I've had a drastic change in my knees. Something has gone wrong. They are very difficult to bend past a certain point, and kneeling is no longer possible, but neither is crouching. Getting up off the floor is getting harder.

My body/brain reaction to using the heat for those 7 weeks was a shocking realization. Maybe there is some degree of a gas leak, or maybe I'll never tolerate gas heating. I can never go back to that state though. I cannot go back to the horror of that type of neurologic episode if it can be avoided in any way. But the reality is, any number of things can put me back there. Any number of triggers could cause that type of state. I can't avoid most things in this world, because I have so little control.

The problem with my rectum also feels like a devastating progression. Being unable to pass stool without applying substantial external pressure, I can feel how stretched out it is. Just like my stretched-out bladder, this is a progressive problem.

The migraine being in my teeth/jaw causing problems eating is just another impossible-feeling problem, although my sense is that it will keep moving around. But this pain came with the upstairs scent, which is out of my control and will continue affecting me to some degree for the foreseeable future.

All of this contributing to my current obsession with the analogy of a sinking ship. It seems that a change in housing is the only path forward, but with my reactivity to nearly all humans, fragrance, food smells, heating systems, and building materials (paint/varnish/anything newly renovated) makes this feel completely out of my grasp. But if I cannot achieve it, it seems that that would be my doom. I do not see the path forward. I cannot even fathom how to have smaller repairs done around here, much less face the outside world of all uncontrolled variables. I don't see a way out, and I'm going to drown.

Then, I have my go-to devastating fears and pains that pile up in me and constantly weigh on me.

-Grieving my Wilma. Being without her and her kind of company for the rest of my life. It still stabs me when I think about it.

-Grieving Grandma. I will never stop missing her.

-Fear of intolerable pain with no pain management. I already get close to this quite often.

-Fear of being trapped in the migraine with brainstem aura and disordered consciousness state without being able to eliminate the cause, like I did when I discovered the heating problem. That is not a livable state. That is a degenerative state.

-Fear of untreatable conditions with no preventive care or treatment possible. What happens when I get an ulcer or a kidney stone or a UTI or whatever it may be? Any infection. My tiny circle protects me, but they can't control everything either. My body becomes intolerable when I even catch a cold.

-Loss of mobility and cognition

-The world feeling very hostile to me, since my environment attacks me constantly as well as the people in it causing me harm.

-Having no safe space but with the impossibility of finding a safer space.

-Mom aging is the ultimate doom. Aging is fine, but losing her one day is not survivable.

-I strongly believe that the time will come that euthanasia is my only option, but I don't believe I will have access to it when I need it. And that time feels closer and closer every day.

How am I to go on? I'm cold. I'm scared. I'm beyond tired. I'm trapped. Mostly, I survive one problem at a time, but there's never only one problem. There's always all of these problems, all inescapable. Trapped in this apartment and this body and this life. This sinking ship.

How to Go Fragrance Free

......And be able to visit me!!!


Okay, I have a few updates. Then, I'll be describing which products are safe for me, and how someone would need to be unscented enough to visit with me.

The holidays were pretty sad for me. I mostly had to visit with people through Skype. There are so few people with whom I can share a room anymore. I also had laryngitis and bronchitis for a few weeks, so I was sicker than usual, and my mast cells were really irritated, so I was needing extra Benadryl around the clock.

I stayed at my mom's house through all of December, since our apartment was still triggering a major reaction.

Earlier this week, I saw my supposed mast cell doctor (allergist/immunologist). His office is supposed to be fragrance free. But they have started using an air freshener spray in the waiting room and the bathroom. They also have air purifiers in each room, but none of them are turned on. So, his office is no longer safe for me. I had to wait in the car for an hour and a half before my appointment. The appointment was not very productive. He doesn't seem to be treating me for mast cell disease anymore. He didn't seem to remember any of the medications that he is prescribing me, including the mast cell stabilizer. He did recommend I try the supplement CoQ10, but that is more likely to help fatigue and pain than allergies or environmental sensitivities. So, I feel like he's given up on actually helping my mast cell activation. I appreciate that he wants to improve my quality of life, but it seems that I really need more of a mast cell specialist. I'll be looking into getting in with a doctor at Rush next. Although, I'm still afraid of going inside a doctor's office, since they are all so scented.

The same day as the appointment, I finally moved back home. It was a little earlier than I wanted to, but the house cleaner used scented products at my mom's house, so we had to move me out abruptly. Coming home was difficult, because something in the air was still problematic. After having bronchitis, my airway still seems to be very reactive, so I developed a persistent cough at home. (Reactive airways are common in mast cell patients.)

Yesterday, we had the carpet steamers come by to try to reduce the amount of dust in our carpeting and in our newly inherited 30-year old couch. We made sure they didn't use any scented products. Initially, it made things worse, because it pulled all the dirt and dust out and into the air (It also smelled really bad.) So, last night was pretty miserable. But, today, now that the dust has settled, it seems to be easier to breathe in here. It's hard to say for sure, as there are so many factors contributing to my state at any one time, but I believe the air is clearer. We also bought a dust mite encasement for the couch, so any dust inside will stay inside. We also bought a new heavy-duty air purifier, so we have one in each main room of our house. Next on the list will be mattress encasements, but I'm putting it off for now, since I seem more comfortable in the bedroom. (It would be a good idea, since both of our mattresses are 12 years old at this point.)

Okay, onto the list of products I use that do not trigger a reaction! I know you're excited!

I am not guaranteeing that anything on my "safe list" will be safe for anyone else with chemical sensitivities, or that I will not become reactive to these in the future. These are just the ones that work for me today. The disease tends to be progressive, so this list may get shorter with time.

Also, I seek out the most affordable products that I can tolerate, not necessarily the most natural or safest products on the market.

I get asked all the time about cleaning products. Most people know there are free and clear laundry detergents. We usually go with Tide, because it seems effective at getting out smells, but All and Seventh Generation work, too. This one is the Target brand, which is usually the best price:

http://www.target.com/p/-/A-13186521

I don't use any fabric softener, because it is just a major irritant for me.

Here is the dish soap we use, which is the Target brand:

http://www.target.com/p/-/A-16600501

Seventh Generation also makes a free & clear dish soap. This one is okay for me, too. And dish soap also makes a good general all-purpose cleaner around the house. Anywhere you want suds in your cleaning, dish soap is a good solution.

For general cleaning, I use the seventh generation brand. They make an "all purpose natural cleaner," as well as a "glass and surface natural cleaner." These are the only ones I know of that do NOT contain essential oils, which are super problematic for me. I use these for most of my cleaning:

http://www.target.com/p/-/A-15172078
http://www.target.com/p/seventh-generation-natural-glass-and-surface-cleaner-free-clear-32-oz/-/A-14694505

For dusting, I just use a lightly dampened cloth. Apparently, that's safest for those with dust allergies.

For hardcore cleaning, I'm still experimenting on what works best. I'd like to try this product for our shower:

http://www.natlallergy.com/tub-tile-cleaner-32-oz-spray-bottle.html

I think that's most of the cleaning products. (Obviously, I don't have the energy to keep a perfectly clean home, but these are the products I use when I can clean!)

Personal products can be really tricky, too.

A good example is unscented deodorant. "Unscented" deodorant is usually NOT fragrance free. Here's two good examples, that I used for a while, before I became too sensitive:

But as you see on the ingredients list, both of these products contain fragrance!

So, I've switched to this Almay brand, which I've only been able to find online:

https://www.amazon.com/Almay-Sensitive-Anti-Perspirant-Deodorant-2-25-Ounce/dp/B0039YQ8P0

It says "fragrance free," not "unscented," and so it actually contains no fragrance. This is true for most products. Unscented is not enough! This deodorant literally smells like nothing. If someone else were wearing the Sure deodorant, I probably wouldn't notice, because it contains very little scent. But this may not always be true for me.

Another one I have to order online is hair products. Regular stores just don't sell unscented hair products. I have used several brands. I don't love them as much as I used to love my "traditional" scented shampoos, but at least several brands are acceptable for me.

Right now, I have the ones by Free and Clear. They also sell hair sprays and gels, as well as various other fragrance free personal products.

https://www.amazon.com/Free-Clear-Set-Shampoo-12-Conditioner-12/dp/B00164E8TI/ref=sr_1_1_s_it?s=beauty&ie=UTF8&qid=1483932525&sr=1-1&keywords=Free+and+Clear

Some pharmacies will order this brand for you.

But there are other choices. Sometimes, I just look for the best price. Desert Essence makes a decent FF (fragrance free) shampoo and conditioner:
https://www.amazon.com/Desert-Essence-Organic-Shampoo-Fragrance/dp/B0019GZCYI?th=1
https://www.amazon.com/Desert-Essence-Conditioner-Fragrance-Free/dp/B0017QSW92?th=1

There are others, but these are the ones I use the most. Jason and Earth Science are two other brands that make FF shampoo and conditioner. Available on Amazon or Walgreens online.

I know you can also find FF products at Whole Foods, but I can't shop there anymore, due to the essential oils in the air. (Reminder: essential oils may be more natural, but they are still very dangerous for me!!!)

Body wash is so much easier. The Target brand makes a liquid body wash:

It's generic for Aveeno Active Naturals Skin Relief Body Wash.
http://www.target.com/p/daily-moisturizing-body-wash-18-oz/-/A-14044281

I use this soap for hand soap, too. I've even gone crazy and tried it as shampoo, and it's not bad. I know that sounds nuts, but the ingredients are pretty similar to a mild shampoo. And it is much cheaper and easier to find than actual FF shampoos.

There's also Dove sensitive skin beauty bar, which is fragrance free. I've gone a little crazy and tried this for washing my hair, too. It will also work in a pinch.

So, you could literally wash head to toe in either of these, and end up clean and fragrance free. It would be cheap and easily accessible for anyone that can get to Target.

*****If someone is normally heavily scented (from products in their home, at their work, on their clothes, or any exposure to cigarettes), they may need to use an odor-removing wash, which is often used by hunters. This is an example:

https://www.amazon.com/Hunters-Specialties-Scent-Liquid-Shampoo/dp/B0132U0UK4/ref=sr_1_3?ie=UTF8&qid=1483937044&sr=8-3&keywords=scent+away

This is also an easy all-in-one solution.

If someone's clothes are normally strongly scented, especially if they usually use fabric softener, they may need to use an odor-removing detergent like this one:

https://www.amazon.com/Hunters-Specialties-Odorless-Scent-Detergent/dp/B0132U0VOE/ref=dp_ob_title_sports

BUT, even if a person were to wash their clothes in FF detergent, not use fabric softener, and use only FF personal products on the day they see me, I can still have a major reaction. This seems to be due to residual scents. Our hair, skin, and clothes are so absorbent. They hold on to fragrances. So, if you usually use any type of scented product (natural or artificial!) in your house or in your daily life, it will probably be stuck on you. I also know that vapor from e-cigarettes are a huge problem for me, as well as regular cigarette smoke (which has been a problem for me forever).  ***Another reminder that products with essential oils or diffused essential oils are a major trigger for me!

The best way around this that I can think of is storing clothes in an air-tight bag immediately after washing in FF detergent. Ziploc Big Bags should work for this:

You can get them at Target and Walmart.

Then, you would just need to be freshly showered with FF products, and put on the unscented clothes that have been sealed in the bag before seeing me. And then not be exposed to any new scents/vapors/essential oils/etc. on the way to seeing me.

I am absolutely not asking anyone in my life to go to all of this trouble. This is my problem, not theirs. I would like to try to maintain my current relationships through texts, calls, Skype, etc. Especially Skype, which really helped me to "participate" in holiday gatherings. No, it wasn't the same. But it was better than nothing.

This is just for people in my life that would like to have an in-person relationship, and are willing/able to go to all of this trouble in order to visit with me.

My fear is that even with all of this, I'll still have a reaction, which happens so often. My head will start spinning, I'll get suddenly congested, or I'll start having palpitations. The cascade of symptoms will follow, ending with my days of severe facial pain and exhaustion. And I have a serious problem with speaking up when an exposure has happened. If the scent is really noticeable, I've gotten better at quickly fleeing the situation. But for scents that more gradually seep into my system, I'm terrible at being assertive. Especially when I know that someone has really tried to come unscented. (See: Very British Problems)

And honestly, even though our home is full of safe products, we still have to run two air purifiers on high all day in order for me to be somewhat comfortable. I think it's just an older space with older furnishings. So, I'm not sure how I will ever be able to go anywhere outside my safe spaces, like other people's home or stores. I have had some success eating out. If the people I'm with are unscented, and the restaurant isn't crowded, I can sometimes survive. Most restaurants want you to be able to smell the delicious food, not numb your senses with added scents. But, if something in the kitchen burns, or someone scented sits down near me, I'm out.

***Reminder: essential oils are huge on my list of triggers. I have serious reactions and cannot tolerate being near them, even if it is just residual scent on hair or clothes.

Anyway, I thought I should lay out what it seems like might work to help me to be less isolated. Feel free to ask if you have any questions. Thank you for caring enough to read my updates. I still need to work on staying in touch with people. I just still don't have anything interesting to share with people. Dealing with all of this has been my life for at least a year now. This life is not getting easier, but I'm still here.