Blister bluster ...

This past month (5 weeks actually!) has been the roughest I've had in a while, and I'm SO glad it's over!

I woke up one morning with a sore spot on the side of my tongue. I figured I'd bitten it in the night, got a canker sore, it'll clear up in a few days. Nope. Instead of getting better, it got worse. WAY worse. It got bigger, for one thing, and more started showing up ... your regular run of the mill canker sores don't do that. I had various sizes of blisters all over the inside of my mouth ... on and under my tongue, inside my cheeks, on my gums, the roof of my mouth, and down my throat ... I couldn't eat or drink without severe pain; I could barely talk. I ate tiny bits of oatmeal when I could, sipped water when the pain wasn't too bad. 

 

I went to the outpatients department at the hospital twice (my dr was away) and they barely looked at me, said it's nothing, sent me home. I should own shares in Oragel by now, I've gone through dozens of tubes of the stuff to help ease the pain, but nothing helped solve the problem. When it finally started to get a little better, the blisters spread to my lips. I looked like I had the worst chapped lips ever, with crusted scabs on and all around my mouth. I barely left the house, it was so painful and embarrassing.

I spoke to pharmacists about it and then finally my dr, and it was suggested that it might have been caused by wearing a mask. When we had our last lockdown and some local cases, the stores got very strict and I forced myself to wear one whenever I had to. 

 

Asthma & breathing-wise, it's difficult. PTSD makes it even harder. But they say that masks keep the goobers out and keep your own goobers in, so I wore it. But what about if you're basically allergic to everything, and when you put on a mask you actually trap the allergens in there close to your face? The only thing anyone could come up with that could have caused this huge reaction I was dealing with was that I was exposed to an allergen that likely got trapped in my mask and I was repeatedly re-exposing myself to it every time I wore it, then it spread like wildfire and got out of control. I have no proof that this is what happened, but it's the only thing anyone could come up with that makes any sense.

 

After the blisters spread to my lips my dr got concerned that they were getting infected and wanted to prescribe me an antibiotic ointment. I'm allergic to antibiotics of all kinds. I've ended up in the hospital with anaphylaxis for using eyedrops for pinkeye. So of course she was really hesitant in even mentioning it to me. This was at the 5 week mark and I was desperate, so I said that in my experience with antibiotics, it takes 48 hours before the reaction is at its worst. I told her that I know I can survive 2 days for sure and that if she could hit me hard with antibiotics for that long, I would be ok. OMG the look on her face was priceless. But I know what I can handle and she knows that, so she went along with it with a few conditions. When I saw the name of the ointment when I picked it up I have to admit I got a little nervous. I've used it and reacted badly before. But I knew I had 2 days.

They were a miserable 2 days, and I did use 2 epipens and a lot of benedryl, but it worked. The mess didn't spread any further, and after the 2 days I tapered off using the ointment unless it felt absolutely necessary. 

 

Then I found an absolute miracle cure for the residual chapped lips. Once the crusty part was gone (yep - ick!) it was still raw and sore, but I got thinking about when my sister had told me to use Vitamin E on my arm when I burned it last month. (Yes, I'm a walking disaster). So I got the Vit E gelcaps ... I pierced a hole in the end of one and squeezed out the oil, spread it on my chapped lips off and on through the day, and within 3 DAYS it was cleared up completely. I will never be without this stuff in my house from now on. 

 

I had a couple of small blisters pop up inside my cheek the other day ... I literally felt them appear ... but I popped them and rinsed them out repeatedly and nothing more happened. 5 weeks of misery and no absolute definitive cause except for a theory. 

 

I get that masks are important and safe for many reasons and for many people. But if there's even a chance, and there is, that this is what caused my misery, I'm out. I can't and won't go through that again and I wouldn't wish it on anyone. Well, maybe a couple of people ....

 

PTSD and sound ...

A few years back I was explaining to my doctor some things that I had known about myself for a long time but was noticing that it was getting increasingly worse.  I have an intolerance to certain sounds.  It doesn't have to be a particularly annoying sound, or abnormally loud, and it's often things that are just written off as "background noise" and hardly even noticed by most people.  This intolerance developed about halfway into my first abusive relationship and has gotten incrementally worse over time.  The things that trigger me most are running taps and fans.  I cannot stand the sound of a running faucet or fan (mainly exhaust fans, like over a stove or the car heater) for more than a few seconds.  It becomes all I can hear, no matter what else is going on in the room.  It builds up to a deafening sound in my head so that I can't focus, can't think ... I'm disoriented, annoyed, easily irritated, I drop things, I can't carry out simple tasks or finish whatever it was I was doing when it was turned on.  Often I get a sharp pain, similar to a headache but not quite, way in the lower back of my head which doesn't go away until long after the sound is gone.  

When I described this to my doctor she had some tests run and I was diagnosed with Hyperacusis and Misophonia.  She was surprised I'd never heard of them before, expecting that I'd looked it up since I was able to so clearly describe the exact symptoms of it.  

So, what are they?  Here are a couple of simple definitions:

Hyperacusis is a condition where you have trouble tolerating sounds that do not seem loud to others, such as water running, fans, dogs barking, walking on leaves, household appliances, tapping fingers,rustling papers, even laughter.  The sounds that are your triggers (they are not the same for everyone) are amplified to unmanageable heights and cause reactions like I described above.  

Misophonia is similar but in this case the sound triggers an emotional or psychological response.

The two conditions are compared as Hyperacusis causes a physical response, while Misophonia causes an emotional reaction.  Both are fairly uncommon, but do occasionally coexist.  Neither are a definite indication of a hearing deficiency ... my hearing is fine.  They can be caused by head trauma and exacerbated by TMJ and PTSD ... yep, I check all those boxes.  

My most recent ex knew that I had this problem, particularly with running water.  Being who he is, he would sometimes turn on all the taps in the house with screaming instructions forbidding me to turn them off.  They often ran all night long, with me lying in bed wide awake, head pounding, anxiety through the roof, in a state of complete panic until long after they were finally turned off.  Times like those can make you feel like you are slowly going mad.  

In my years of dealing with ptsd, both on my own and in group or individual counselling sessions, I've become pretty good at recognizing and managing situations that I can anticipate being a problem for me, particularly where sound is involved.  I do have the exaggerated startle response too, which is a real treat when your autistic kid comes up behind you and presents you with a loud CLAP out of nowhere.  Some things can't be anticipated so much and you just suck it up and deal with it as best you can.  Other things can be managed more easily.  

I choose my phone's sounds very carefully.  I had a couple of "ding" sounds for when my sisters text me ... one ding for one, two for the other.  But if they got chatty, or even just sent more than 2 messages, the multiple dings would start me down the rabbit hole.  So I changed them to a gentle "whoosh" sound.  I also often just mute my phone completely.  

Often the dogs are in the kitchen when I'm cooking or doing dishes, with the tick tick tick of their toes on the floor, plus the faucet could be running, or the stove fan might be on, so the kitchen is a big trigger area.  I try to keep the dogs out of the kitchen completely, partly because I don't want them underfoot and possibly getting stepped on or tripped over, but also to keep that tick tick tick sound away from where I'm already dealing with the other sounds that I can't eliminate.  I run water minimally.  I use the ceiling fan and open a window to avoid using the cooktop fan.  I run the dishwasher when I'm completely finished everything else in the kitchen so I can leave the room.  

I have yet to figure out how to turn off the music that plays when the laundry machines finish their cycles but hopefully it's possible.

Multiple people in the house plus critters means that often the tv or tablet or whatever is playing a video or music or something is turned up so it can be heard above everyone.  If I can control the rest of the environment so that there are no other triggers, then I can sometimes tolerate this ok ... but if it's just me in the house I usually don't even have any on.  No tv, no computer, no videos, nothing.  I sometimes have music on in the kitchen when I'm cooking alone, but as soon as there are other noises added to the space it gets turned way down or off.  Unless I'm listening to music or playing a game, I don't have sounds turned on my phone or computer most of the time.  As soon as I download a game the first thing I do is shut off the sounds.

When I go for a walk, I wear headphones.  Then I do listen to music.  But this is my music, chosen by me, for me, nothing unexpected or annoying, and it helps block out unwelcome other sounds.

I'm writing this at 5am, the house is quiet, I'm the only one awake and my mind is at rest.  Soon, though, the day and its many sounds will begin and I'll get busy dealing with them as they come.  

So if I'm at your house, and it gets busy with people, critters, electronics, music .... don't be offended if I have to just step away for a bit.  I will come back.

** note ** It has been suggested by some good friends of mine that I try EMDR as a therapy for my PTSD.  I know they mean well, and I do appreciate that, but I've looked into it and spoken to many therapists about it over the years and it is not a viable option for me.  I have so many types of trauma spread out over so many years by multiple sources that it would take an impossible amount of time and money to even begin it, and because of all of that it's unlikely to be effective.  So I do thank them for their concern and suggestions, but it's not for me.