Chronic pain and other symptoms

I’ve had widespread joint pain since I was a child. It’s gotten much worse and more frequent over the decades. When my knee got so bad about three years ago that I was on crutches for five weeks, I mentioned to the doctor that I thought I had lupus, after much research. My normal doctor was on vacation, so I saw his colleague. He said he didn’t think it was lupus. About a year later, I talked to my normal doctor about my chronic pains and mentioned I thought I had lupus. He at first said the same thing, he didn’t think so. But then I told him more symptoms I’ve always had that made me think I had it and he partially changed his mind. He said he didn’t think it was lupus, but he wasn’t ruling it out. He said he thought I had a connective tissue disease. I’ve been researching this for a while. I was reading about several different CTDs and I was reading about one called SLE. It sounded just like what I have, all my symptoms. I started thinking that I have SLE. Then I read that SLE is more commonly known as lupus. Lupus is a connective tissue disease. It would explain so many of my symptoms.

Whatever I have, I’m pretty sure I’m in a flare-up right now because it’s more than just my tennis elbow that I’ve told people about and is noticeable. That’s just the most limiting symptom. Both my elbows are hurting, it’s the location of tennis elbow in both. My feet are hurting, my ankles, wrists, and knees. I’m having recurring diarrhea, even plain white rice made me sick. My thumbs are hurting, my big toes too. And my mouth is incredibly dry. I’ve had a rash too that’s just red but not bothersome. And I’ve had some pain in my upper chest and collar bones, and back. Sometimes I get random pains elsewhere too. My eye doctor always comments how dry my eyes are. I’m often dry in a lot of places. All of this is recurring and has been for decades. Currently, the most persistent is the right elbow.

My legs sometimes go weak all of the sudden and give out while I’m walking. I’ve never actually fallen though, I’ve always been able to catch myself. My arms have weakened so much in the last couple of years that I can no longer hold up my music in church choir, whether it’s the hymnal or just a single sheet of paper. I have to use a music stand. I can’t even hold up a lightweight candle at a candlelit vigil or just my arm holding nothing. I used to be able to do push-ups from my knees, but now struggle to push myself up at all.

I just want to stop hurting, regardless of what’s causing it. Because of the tennis elbow, I can’t do my own hair, I’m having trouble getting dressed, I’m having trouble doing things at work. Something hurts on me literally about 98% of the time. It’s pretty rare for nothing to hurt on me. Often, multiple things hurt simultaneously. When I was a kid, it was random and occasional, but it got more often and worse over time.

I can’t hand write more than like a short note anymore, even when my elbow doesn’t hurt. The last time I filled out my own ballot to vote, my hand hurt so much that I was in tears. My county stupidly no longer offers electronic voting unless you’re blind or deaf (which I don’t understand why being deaf would prevent someone from filling out a paper ballot). Last time I voted, my mom filled my ballot out for me and had to sign something saying she helped me and didn’t change my vote.

I have been diagnosed with hidradenitis suppurativa, which is a chronic disorder where you get infected sweat glands and it causes breakouts similar to acne and lumps similar to boils. This happens mostly on parts of the body where skin rubs against skin (underarms, under the breasts, inner thighs, bottom, pubic area). I’ve had lumps as large as golf balls before. They are usually very painful and uncomfortable. I just found out yesterday that HS is an autoimmune disorder, where your immune system attacks your body. CTD and lupus are also autoimmune disorders. It’s not uncommon for people to have multiple autoimmune disorders, and it’s also very common for autistics, like me, to have autoimmune disorders.

I put on a happy face and act like I’m fine. Most people have no clue how much pain I’m in and how often. OTC and prescription medications only do so much. I don’t often talk about everything, at least not historically, partially for reasons I’ve discussed in previous posts, and partially because no one wants to hear someone complain all the time. If you tell people about every little thing going on they think you’re lying, or exaggerating, or looking for pity. Also, if I complained every time I hurt, it would be constant and people would get sick of hearing it.

I go back to the doctor on Monday and we’ll see what he says. I think he’ll put me on steroids and maybe a shot.

Chronic pain and other symptoms

My Dyslexia Story

I always knew I was smart. People always told me so, and I just knew it. Everything, academically speaking, came so easily to me. Math, science, history, geography, even spelling and grammar — they were so simple to me. I never did what I would consider “studying.” I really wasn’t even sure until college what “studying” even was. I just went to class, paid attention and took notes, did my work, did the review, then passed the test — usually with an A, sometimes a B. I never understood what people meant by “studying,” or why it seemed that everyone was always doing it. It didn’t make sense to me why everyone needed to study all the time when I didn’t. I thought everyone was capable of just doing what I did, show up to class, do the work, take the test. So, I knew I must be smart because I understood most things academically and it was so easy for me — except reading comprehension or reading speed tests.

Although I knew I was smart, whenever we had to take reading tests, or read in class — either aloud or silently — I felt dumb. Reading and reading comprehension was always the one academic area that I struggled with. It never made sense to me. I didn’t understand why I was so good at everything else academically, but I was awful at reading. I knew people who had been identified as dyslexic, and I never thought I was. I didn’t have the same problems that they had. I always did perfectly fine with word problems in math, I did fine when having to read small, short sentences or paragraphs for history and geography and other classes too. I was an excellent speller and great at grammar. I also did not have issues writing, as proved by my blog. I always saw exactly what was printed on the page, no letters looked backwards or moved to me. Some dyslexics I know see lights and monitors flickering, I never did. So, in my mind, I must not be dyslexic. I just felt dumb.

I remember having trouble learning to read. I remember one instance when I was about 8 or 9 and listening to and watching a 3 or 4-year-old read a newspaper. I remember my mom being amazed that such a small child could read. I also remember that I was thinking that he probably didn’t know the meaning of what he was reading, but that it seemed he was in fact reading the words correctly — as my mom seemed to think he was. I remember thinking, “Gee, I’m 5 years older than he is and I can barely read a level 1 book. Here he is reading a newspaper!” I felt really dumb, and jealous.

I had what I later found out was a severe social phobia. I never told anyone I had trouble reading until probably high school. I went through all of preschool, elementary, and middle school “faking it” and not telling anyone I struggled. Even through high school and college, even though I had told a few family members, I still never told anyone else; and I never asked for and received any assistance or accommodations. If you read my other blog posts, I talk about my social phobia being so severe that I didn’t see doctors or tell people about other problems I had either. I went through most of my life just living quietly in my own world, just pushing through with all the anxiety.

In school, whenever I had to take a reading test, I was always one of the very last people finished. It was frustrating, physically and mentally painful, exhausting, and very time-consuming for me to read. None of the techniques that teachers would go over to help kids become better readers or to help kids be able to answer the comprehension questions ever helped. So, I started ignoring the lessons on that. I tried reading the questions first like they suggested. That didn’t work because I could never remember what I was supposed to be looking for — I couldn’t remember the questions as soon as I finished reading them. I tried highlighting what I thought was important information, but the stupid questions often didn’t ask what I highlighted. The questions often asked what I thought were obscure little facts from the piece. I learned after many years that, although it took me longer than most everyone else, what worked best for me was to read it first. Then, I would go through each question one at a time. After reading the question and the answer choices, I had to go back to the piece and find the answer. Reading the piece first, I got a general, overall gist of what it was about; but, I couldn’t remember any details. So, when I went back to look for the answers, I kinda knew the general idea, but I had to hunt for the answer. I often had to read and re-read sentences, paragraphs, or sometimes the entire piece multiple times to find the answer to the question. In this process of looking for the answer, I often forgot what I was looking for, I forgot the question; and I had to go back and re-read the question several times.

The worst questions were the hypothetical ones, or the ones that ask you to draw a conclusion or interpret meaning. They would ask, “What did this character probably mean when they said….” Well, I almost always got all those questions wrong. I now know that I’m autistic and that that’s why inferring meaning is hard for me. I’m extremely literal. When a character says something, I think they actually mean what they say. I had no idea it actually meant something else. I have trouble drawing conclusions because, being autistic, I can see a whole host of outcomes. I usually could see most of the answer choices being a possible outcome. I now know that I think outside of the box, and those tests test whether you can think inside of the box; that’s what they want, the in-the-box answer. I didn’t know that as a child though, so I agonized over every question. It took so long just to read the thing, then to find the answers, then I had to figure out all those stupid questions like that.

This process was very exhausting and frustrating. I know now that I’m hypersensitive in all my senses and I have General Anxiety Disorder. So, being one of the last ones done, I’d be subjected to all the other kids who were already finished making noises. Sometimes they’d talk, even if it was just a whisper; or, even if they weren’t talking, just people rustling around, getting out books to read or work to work on, or kids opening and closing the door to go to the bathroom. I hear everything, and I can’t concentrate. It makes me very anxious and even more frustrated. I need it completely silent. Looking back, what I really needed was to be in a room with just me and a teacher who read the story to me while I followed along. I needed to be in a study carrel and possibly have ear plugs or noise-canceling head phones on while answering questions. I needed the temperature to be just right and the lights to be dimmer than most people like them. For the ideal environment, I’d also need no odors in the room or coming through the air ducts. I need to not be in any pain or hungry. Even then, although my anxiety would be really low, if I had any at all, I still don’t know that I would remember the passage well enough to answer the questions. And, even still, I wouldn’t be able to answer the hypothetical and inferring questions.

We often graded/checked the questions in class. I always preferred to grade my own, which teachers sometimes did. When other students graded mine, it always gave me great anxiety and I was greatly embarrassed. I knew I didn’t do well, and sometimes my classmates would make comments about me not doing well and it just made me feel even dumber. When I handed it in to the teacher and she looked at it, I felt awful. Most of my teachers would look at my score and say, “Holly, I’m surprised! What happened?” I was mortified. I was embarrassed. I knew I had some kind of problem, but I didn’t know what it was and my social anxiety prevented me from telling anyone or asking for help.

Even though I had the same experience with every reading comprehension test, even though I had trouble learning to read, even though I could never tell a teacher what the story was about or what happened, none of my teachers ever took it upon themselves to intervene or to find out what was going on. I guess they didn’t think to because I was so good in every other area and made mostly A’s in everything else. I actually remember hoping that a teacher would realize I had trouble and get me some help, but that never happened. I don’t hold a grudge, it doesn’t bother me that they never did, though.

I made it through elementary school. In middle and high school, I was always in advanced placement English ironically. My older sister always was, and I looked up to her. I wanted to be like her. If she could do it, so could I. So, for 7 years, I was in advanced placement English, where they read novel after novel after novel and have to have discussions about them, write papers about them, and take tests over them. I didn’t admit this until just a few years ago, but I faked my way through 7 years of AP English. Honestly, I can probably count on one hand how many of those novels I actually read. I maintained mostly B’s and some A’s in English over those years. I took the AP exam at the end of high school to try for college credit and missed getting college credit by one grade level.

I’m now open about this; and, with a lot of therapy, my social phobia has diminished quite a bit. So, I now talk about it and tell people. They usually ask me, “How did you do that? How did you fake your way through 7 years of AP English without reading the novels but still making A’s and B’s?” Well, I guess what it comes down to is that my overall intelligence is high enough that I was able to find ways to cope and make accommodations for myself. With testing in the last couple years, my overall IQ tested in the 94th percentile. That means 6% of the population tests at a higher IQ than I did. For comparison, to become a member of Mensa, your IQ has to test in the 98th percentile.

I didn’t read those books. I would usually read the first sentence of every page to get the gist of what the book was about. When I didn’t get something or if something was confusing, I’d go back and read a little more before the first sentence or after. I paid attention in class and took notes. I paid attention anytime classmates were talking about the book outside of class. I read Cliff’s Notes or synopses or outlines or commentaries or anything I could find about the book online if I needed more help. I’d watch the movie of the book if there was one, realizing that movies are often not the same as the book. It did, however, give me the main idea of the book. I did reviews that the teacher gave us in class. All that culminated in me making good grades and faking my way through 7 years of AP English. Although reading is very difficult for me, non-fiction is often not nearly as difficult because it’s just giving straight information and I don’t have to follow a story or a sequence of events. So, reading a short passage about the book online was much easier for me than actually reading the book.

I did the same thing in my literature class in college. On a side note, I’ll always remember my literature professor, Dr. John Smith (seriously, that was his real name), who told us he was 83 I think it was. He was so proud of his stamp collection that he brought it in to show us in class. What I didn’t like about him was that he graded based on an old grammar handbook or whatever. He’d count off for things that grammatically were correct nowadays, but were once incorrect. There was no way for us to know what was correct 60 years ago. He’d count off for punctuation that I know for a fact I did correctly, but apparently it was different in his time.

Other symptoms I have of dyslexia that I didn’t connect to my reading difficulties until adulthood include getting opposites mixed up. I often will be shivering and say, “I’m hot.” Or, I’ll finish eating a big meal and say, “That was good, I’m hungry.” I also say things backwards; I’ll get the words mixed up and they’ll come out of my mouth in the wrong order. I’ll say things like, “The wall is painted on the tree,” when it’s actually that the tree is painted on the wall; or I’ll put the preposition in the wrong spot in my sentence. I also have trouble understanding meaning when there’s a homonym when I’m reading, or a homophone when listening. So, a simple example would be, if someone said, “I am present.” I very well might think, “That doesn’t make any sense. Why are they calling themselves a present?” while I’m picturing a wrapped birthday present. My favorite example of having trouble with homonyms is “ice cream floats.” I once read a flyer for an ice cream social being held at the fire station. The top of the flyer read, “Ice Cream Floats in the Bay.” I read it and said (aloud), “It does?” I was picturing a scoop of vanilla ice cream floating in the San Francisco Bay (because that was the only bay I could think of at the time). I concluded in my mind that ice cream most likely would float in the bay, but I couldn’t figure out what that had to do with eating ice cream at the fire station or why it would be on the flyer. It took me about 5 minutes to figure out it wasn’t even a sentence. It was a tagline for the event and it actually meant “ice cream floats” as a noun, the dessert, and “in the bay,” as in a fire station bay. It was saying that we would be eating ice cream floats in the fire station bay. That might have something to do with me being literal as well.

Some people ask me what it’s like for me to read. The closest comparison I can come up to is this. Sometimes it’s like reading a list of random vocabulary words. I see exactly what’s on the page. I can tell you what each word individually says and means. I can read to you each individual letter in order. But, when I combine those words into sentences, then paragraphs, then into a passage, it takes considerable effort to try and figure out what it means because it doesn’t seem to make any sense. So, for example, if you have the vocabulary list, “cat, dog, house, doctor, tree, car, book,” I can read each word to you and tell you what each word means. However, when I put those words into a sentence, “cat dog house doctor tree car book,” it doesn’t make any sense. To me, reading is often just reading individual words and knowing their individual meanings, but having trouble making sense of the sentence as a whole. It’s different, however, if it’s something I wrote myself. I already know the meaning, I wrote it, so I don’t have any trouble. I also get letters, and sometimes entire words, out of order when I read. Even though I see exactly what’s printed on the page most of the time and am able to read the individual letters to you in the order that they appear, I sometimes will read the entire word as if the letters are out of order. I will sometimes do the same thing with reading words out of order, just like I do when I speak and get words out of order sometimes. For example, the most common words I read wrong are “scared” and “sacred.” I almost always read those wrong. I’ll read one when it’s the other. If the book says, “The scared little kitty,” I will almost always read, “The sacred little kitty.” I see that the word is spelt s-c-a-r-e-d, and I am able to read those letters off the page individually in order, but when I try to read the entire word, my brain tells me it says ‘sacred,’ even though I know that’s not how you spell ‘sacred.’ I actually just had trouble typing out ‘sacred.’ I first type ‘scared’ and had to backspace and fix it. Those two words I mix up more than any others.

So, when I read, I first have to concentrate very hard on making sure I read the word correctly, it’s ‘scared’ and not ‘sacred.’ I then have to understand the meaning of the word, which is not usually difficult, I then have to put each word in the sentence together and consciously think about the meaning of the sentence with all the words put together in that particular order. If there are homonyms, it’s particularly challenging and takes more time to think about and figure it out. By the time I get to the next sentence, I forget what the previous sentence said and what I finally figured out it meant. So, I often have to re-read it. That’s just the first sentence. As I go through each sentence in this way, I also have to keep thinking about the meaning of the paragraph and how each sentence affects the other sentences’ meanings to arrive at the meaning of the paragraph. So, I’m trying to figure out each individual word, then each individual sentence, then put them together to get the meaning of the paragraph. I have to consciously do all of this. It’s very time-consuming; frustrating; and exhausting, both physically and mentally — and that’s just the first paragraph. I have to do this with each paragraph and figure out what the passage is telling me by combining the paragraphs. Again, if there are homonyms or things that I have to interpret because they’re figurative, it’s even more difficult. So, by the time I get all the way through the passage, I’ve forgotten most of what I read and I only have a basic gist of what the passage was about — and that’s just the reading part, if I have to answer questions, it’s even harder.

In my testing as an adult at the doctor’s office, my reading speed tested in the 1st percentile. That means that 99% of people test at a faster reading speed than I did. My reading comprehension tested in the 8th percentile, 92% of people test at better reading comprehension than I did. When I went in to take the test and the proctor told me that I would have however many minutes to read the passage and answer the questions, I told her, “I’m not going to finish.” She then said that if I’m not finished, I’ll get a certain number of extra minutes. I took one glance at how many questions there were and replied again, “I’m not going to finish.” She told me to do the best I can and it’s okay if I don’t finish.

I, of course, only got through about two-thirds of the passages and questions, even with the extra time. When she told me to stop, I told her that, “I told you I wouldn’t finish.” My anxiety and frustration and exhaustion was so high that I started crying. We took a break from testing and I told her about my problems and some of the things I’ve talked about in this blog post. I think she was surprised. I don’t think she really believed me how bad my reading problems were that I had told her about before the test. I could see that she then saw that I really did have reading problems as bad as I said.

So, I was officially diagnosed with “Specific Reading Disorder,” aka dyslexia. My doctor says that the reason I don’t have the same symptoms as other people I know with dyslexia is because I have a different type. I have a language processing problem, whereas some people have a visual processing problem. My doctor was surprised as well at the test results. He could see I was smart, but didn’t expect my overall IQ to be as high as it was. He also believed me that I had trouble reading, but I don’t think he expected it to be as bad as it was. We determined that the reason I was able to “fake my way through” so many years without accommodations is because of my overall IQ compensating for my reading difficulties.  My doctor says that I have a bad working memory (aka short-term memory), and that’s affecting my reading as well. That’s why I forget what the previous sentence said as soon as I finish figuring out its meaning. My short-term memory is bad enough that he sent me to be checked out by a neurologist. Turns out, I’m fine and it’s just a characteristic associated with the autism. I also have a slow processing speed.

Getting my test results finally made everything make sense to me. I now understand why most academics came so easily me. I now understand why I have such great difficulty in reading. I now realize that I really am smart, and I no longer feel dumb when I have trouble reading. Learning my test scores also proved to me that reading ability doesn’t necessarily reflect a person’s intelligence. Just because a person has trouble reading doesn’t mean they are dumb. My doctor has made me realize that, even though I have a high IQ and was able to graduate college cum laude, that doesn’t mean I shouldn’t have accommodations for reading when I need them. Imagine what I could have accomplished if I had the proper accommodations for my dyslexia. I might have graduated summa cum laude! There’s also a thought by some that accommodations are cheating. That couldn’t be farther from the truth. Cheating would be if someone did it for me, or told me the answers; but, just taking a test in the proper environment so that I can concentrate, or having someone read it to me, is not cheating. It’s just leveling the playing field.

My doctor is still baffled I think as to why I’m so good at spelling, grammar, writing, and handwriting. He said that many, if not most, dyslexics have trouble in those areas as well. I think that the reason I’m good at spelling and grammar is because they have rules and I’m good at remembering and adhering to the rules. I also have an excellent visual memory, so I see a word spelt out once and remember it forever. (Except for independence for some reason. I always have to stop and think whether it’s ‘dence’ or ‘dance.’) For example, I looked up the word ‘Fahrenheit’ in the the dictionary one time in 3rd grade and have never forgotten how to spell it. I think the reason I don’t have trouble writing is because it’s my own thoughts. To me, writing is different than reading. With reading, I have to figure out what someone else means; but in writing, it’s my own thoughts. I do often write or type out the words wrong, but I just fix it because I’m able to realize that it’s wrong. For handwriting, I think it goes back to the visual memory thing. I was always good at copying. When I was learning handwriting, I copied the letters. Many people over the years have complimented me on my handwriting.

I have a problem with people, the vast majority of our society, thinking that reading is the most important thing in life. I read almost exclusively for information. I read quite a bit actually, it’s almost entirely non-fiction, and usually news articles or articles about science or technology or space. Those are probably my biggest interests. I read scholarly journal articles about my rare form of endometriosis. I research anything and everything that I want to know more about, which is quite random sometimes. I’m not illiterate. I can read. It just takes me a lot longer and is much more difficult for me than most people. For me to read something of my own choosing, I have to really want to read it. It is by no means fun or entertaining for me; it’s hard work for me. It has to be worth the immense frustration and exhaustion reading causes me. It has to be worth the vast amount of time it takes me. Whenever I start reading something and it becomes too difficult for me, or it isn’t worth it to me, I say, “Too many words” and stop reading it. I’ve always said that, even before I knew I was dyslexic. I still say that.

Reading isn’t the most important thing in the word. There are other forms of entertainment, there are other forms of learning and gaining knowledge. You don’t have to read; and just because someone chooses not to read doesn’t mean they can’t read when it’s worth it to them or necessary. Even if someone is unable to read at all, that doesn’t mean that they aren’t intelligent. I think that it’s true for some that reading more makes them a better reader; but I don’t believe that reading more could ever make me a better reader. It’s not going to change how my brain works. It’s not going to make my brain suddenly be able to comprehend better. There is nothing wrong with audio books or being read to. There is nothing wrong with watching a movie. There is nothing wrong with learning things by experimenting or doing things or watching them be done. There is nothing wrong with learning about places by traveling and talking to people. I’m a visual learner. I never had any problem watching something and answering questions in class. You don’t have to read for those things. It’s not the most important thing in the world. I understand that it’s important for people to be literate to be able to read when necessary, I’m just saying that you don’t have to read for entertainment or to learn things. There are other ways that work better for some. We, as a society, need to start teaching people, and children in particular, the way they learn. Too often, kids are expected to learn by reading, sometimes exclusively. Not everyone learns by reading. Not everyone is able to comprehend what’s written, and that’s okay. We need to stop acting like it’s not.

My Dyslexia Story

The Rare Case of Endometriosis

Just my luck, of all people to have endometriosis-and not just endometriosis, but a rare form, thoracic endometriosis-it’s me, the hypersensitive, extremely modest autistic with General Anxiety Disorder, social phobia, and agoraphobia.  Any of those things would be plenty for me to handle, but of course I get them all.

A quick lesson: endometriosis is when the endometrium (the lining of the uterus) grows outside of the uterus.  It’s very common, but typically grows in the abdomen area, below the diaphragm.  Thoracic endometriosis is when it grows in the thorax (chest), on or above the diaphragm.  Thoracic endometriosis is extremely rare.

This is the story of my endometriosis.

I first started having symptoms of endometriosis when I was about 12.  I hurt from my head to my toes, my whole body hurt.  I had diarrhea and I was vomiting.  I was in cold sweats.  I was lethargic.  My skin was clammy.  I was dizzy and lightheaded.  Sometimes all simultaneously.  This was not a unique event, it happened quite frequently, cyclically.  I knew it had to do with my cycle.  I thought it was normal.  I mean, I knew that not every woman had that much pain and was that sick monthly, but I thought that surely it wasn’t all that unusually.  It actually didn’t occur to me at first that something might be wrong.  Of course, later it was mainly because my anxiety was so severe that I would rather suffer through that than see a doctor.  I knew it wasn’t literally going to kill me, so I just dealt with it.  I learnt that if I took 2 extra strength ibuprofen at the very first sign of this coming on, then I would have little to know symptoms at all.  I had to keep the ibuprofen going as much as I could for the week.  I had to take it before it got bad to prevent it; because I learned that, if I waited until I actually started hurting, the ibuprofen wouldn’t do a thing to stop it and I would just get worse and worse.  I also learnt that ibuprofen worked better for me than acetaminophen for this.

I don’t know exactly when, but around this time too I started having asthma-like symptoms.  I assumed I had asthma, like my sister.  Although, again, I never got it checked out because of my anxiety.  I just wheezed and coughed and suffered through it.

So, fast forward about 13 years.  I’ve coughed since around age 12; but I now had a constant cough I couldn’t get rid of, for over 6 months.  I was about to get on a plane to Prague, so I went to my GP to figure out my cough because I was terrified that they wouldn’t let me on the plane because of the cough.  He tells me that it’s probably asthma and puts me on an everyday inhaler.  It takes care of my cough.  Over the next 4 years, I’m on that inhaler.  My cough wasn’t constant as it once had been, but it started getting worse and worse.

In January 2014, my cough was getting worse again and it was clear that my everyday inhaler wasn’t working so well anymore, so my doctor gave me a rescue inhaler to help out.  My coughing, and my breathing, continued to get worse and worse.  In February, was when my chest pains started.

Actually, thinking back, I had had little tiny pains in my chest for over a year.  They were very small and very infrequent, so I didn’t think much of them.  In February 2014, however, my chest pain became worrisome.  Still not remembering those little chest pains I’d had occasionally, I thought the pain was new and a result of something that had changed recently.  The only thing that had changed was the rescue inhaler, so I read about it.  Listed as a rare side effect was chest pain.  That must be it.  So I call the doctor and tell them.  It took all day for his nurse to call me back.  She said that it took so long because the doctor was thinking about it all day long.  It’s such a rare side effect that he didn’t think that the inhaler was what was actually causing the chest pain.  So, they told me to do an experiment.  Go off the rescue inhaler for a week and see if the chest pain gets better.

So, I did–and the pain got worse.  So I call back and now they’re convinced it’s not the inhaler.  So, I schedule an appointment to come get checked out.  A day before going in is when I had this one memorable attack.  The pain was sudden and incredibly sharp.  It was in the same spot, right over my heart.  The pain was so intense, it literally knocked me to my knees and knocked the wind out of me.  It felt how I imagine it’d feel for someone to stab a dagger as hard as they possibly can through your heart.  I laid there on the floor for a little bit, staring at the bathroom door across the hall, where the ibuprofen was.  It was excruciating and it took just about all the energy I had to crawl across the hall to the bathroom.  When I was able to pull myself up to my feet in the bathroom, the pain became tolerable again.  I took the medicine and went back to lay down on my bed.

At the doctor, they ran all kinds of tests, including an EKG on my heart.  My heart was perfectly fine.  It wasn’t my heart.  The doctor went ahead and gave me an alternative rescue inhaler, just in case, and told me to not use the other one.  He also told me that my asthma wasn’t under control and upped my dosage on my everyday inhaler.  They couldn’t find anything physically wrong.  My blood work showed I was anemic, but everything else was fine.  They said the pain was “musculoskeletal,” or costochondritis (inflamed cartilage in the rib cage).  He prescribed hydrocodone and told me to take iron.  He said there was nothing else they could do, just wait for it to get better.

I found out real quick that the hydrocodone doesn’t do one thing for me.  It has absolutely no effect on me, good or bad.  It doesn’t work.  I was still in excruciating pain while on Vicodin and ibuprofen, even with ice or heat as well.  I continued to get worse, not better.  Since it was on my left side and it seemed to be worse when I moved my arm, I wore my left arm in a sling.  It helped a bit, but it was still excruciating.

I went back to the doctor.  He did all kinds physical tests to see if he could make it hurt.  He had me press his hand and move in different directions in different ways.  They had done all of this before, but they did even more this time.  He was only able to make it hurt once out of all the tests.  He said that it was odd that he couldn’t make it hurt.  I did start hurting after all of that was over however.  I told him the pain had gotten worse and asked if the iron could have made it worse since I had just started that.  He didn’t think so.  I was already beginning to notice that I seemed to hurt worse cyclically and told him so.  He dismissed this, it didn’t make sense to him.  He thought it was a coincidence.  Since the hydrocodone was working, he gave me tramadol (pain med) and meloxicam (anti-inflammatory) and told me I could also take extra strength acetaminophen if I needed.

So, over the next couple months, it continued to get worse instead of better.  I was wearing my arm in a sling, which seemed to help a bit.  I couldn’t drive.  I couldn’t brush my hair at times.  I couldn’t brush my teeth at times.  I had trouble dressing myself.  I physically couldn’t get out of bed some days the pain was so bad.  I was in pain most of the time, but it became excruciating cyclically.  It got so bad that it was excruciating to breathe normally–much less to take a deep breath.  I actually started holding my breath for moments of relief from the pain.  At its worst, all I could do was lay in bed and literally not move a muscle above the waist.  I couldn’t laugh, I couldn’t cry, I couldn’t talk, I couldn’t sneeze or cough.  It was too excruciating.  I would lay there not moving and holding my breath for brief moments of relief from the pain.  I was taking the tramadol, meloxicam, and extra strength acetaminophen, along with ice or heat or Baltic amber, I even tried kombo butter (which I stopped using after an allergic reaction).  All that did lessen the pain a little bit, but it was still excruciating at times.

Then my voice went.  So, I have my arm in a sling, I’m in excruciating pain, and I have no voice.  The voice thing was not uncommon for me.  For a few years, I’d gotten laryngitis and was always told it was due to my asthma, allergies, and acid reflux.  Gargle with salt water and it gets better, it always did before.  Well, this time the salt water didn’t work.  After a month with no voice, I went back to the doctor.  I had absolutely no idea that the laryngitis was connected in any way to the chest pain–neither did my doctor at that time.

My doctor predicted that the laryngitis was fungal, a yeast infection in my throat caused by the asthma inhalers.  So, he took me off the asthma inhalers (and my nasal inhaler for my allergies, which was the same medication as my asthma inhaler), gave me prednisone to help with the asthma instead, and prescribed “several tablespoons of yogurt daily.”  I was to go back in a month if I wasn’t better.  I returned to my GP a month later, in July.

I saw him for my voice, but we were also still trying to figure out my chest pain since it continued to get worse.  I again told him that I hurt all the time, but that it’s at its absolute worse cyclically.  He looked at me thoughtfully and said, “You know what?  It might actually be endometriosis.”  That was the first time I heard anyone mention that.  I kind of knew what it was, but not really.  He said that it was “incredibly rare” in the chest, but that it does happen.  He said that it’s very astute of me to realize that it was cyclic and to connect the chest pain to my cycle.  He said that most women, or doctors, would not make that connection.  He said that it didn’t make sense for anything else to coincide with my cycle, except endometriosis.  Especially since I then told him my history of other symptoms related to my cycle.  He offered to put me on hormonal birth control to see if it helped as a test, but I was reluctant at first.  So I told him I’d wait and see.  For the voice, he wanted to continue a little longer with the yogurt.

By the third month with laryngitis (August), I had lost my voice completely.  I would open my mouth and try to speak and no sound would come out.  Also, at this same time, my chest pain was so bad that I decided to try the birth control.  I figured it was worth a shot.  I called the doctor and he gave me a prescription for the birth control and told me to go to an otolaryngologist (ENT).

The ENT saw no signs of fungus in my larynx.  He instead thought I had vocal cord dysfunction.  He predicted that I actually did not have asthma at all, but that it was actually the vocal cord dysfunction causing the asthma-like symptoms.  So, I’ve been treated for asthma for 4 years and now I’m told I probably don’t have asthma at all.  It kind of makes sense.  The inhalers didn’t work so well anyway.  The last month I used the inhalers, I used the rescue inhaler 34 times in 31 days!  That’s definitely not good.  My “asthma” was obviously not under control, so it makes sense that the asthma inhalers might not be working because it’s not asthma.  No one at this point mentioned that either the asthma-like symptoms or the laryngitis were in any way related to my chest pain, which may or may not be endometriosis.  The ENT sent me to a speech pathologist to learn vocal and breathing exercises for vocal cord dysfunction.  I also stopped the prednisone at this point.  I went to the speech pathologist and learnt the exercises.  They really do help.  I still do them daily.

Within the next month, my voice got better, and my chest pain also started to get better.  Late in 2014, I returned to the doctor and reported that my voice was completely better and that I was still in a lot of pain, but that it had noticeably started to get better for the first time all year.  My doctor then told me that he thought that the chest pain was in fact a rare case of thoracic endometriosis, but I was still thinking that the laryngitis and asthma-like symptoms were vocal cord dysfunction.  My doctor told me, however, that both of those can also be from thoracic endometriosis.  In fact, it’s common for people with thoracic endometriosis to have asthma-like symptoms.  So, he thinks that all of it was connected, it was all caused by the thoracic endometriosis and I don’t have vocal cord dysfunction, or asthma, after all.  Based on where I have pain and other symptoms, it’s predicted that I have endometriosis in the left side of my chest, on the surface of my left lung, and on the left side of my diaphragm (or in that area).  At least in the thorax.  I probably have it in my abdomen as well.

So, now, 29 months after I first went to the doctor for chest pain, my chest pain and breathing are still slowly improving.  It’s slower than a snail, slower than a sloth, but it is noticeably improving.  I love baseball and I used to go to a Major League game every month, for years I went.  For the last two seasons, I was hurting so badly that I was not able to go to any games.  I’m so excited because for the first time in over 2 years I actually feel well enough to go to a Major League game.  I’m going over Memorial Day weekend.  I’m excited about going to the game, but I’m also excited because the fact that I’m able to go proves that I’m improving.  I still do the breathing and vocal exercises.  Even though they don’t think any longer that I have vocal cord dysfunction, they still help.  In fact, oftentimes it’s the only way I can get through the day with my breathing.  I’ve been off asthma and nasal inhalers for almost 2 years.  I haven’t needed an asthma inhaler since I started the birth control, and I found that irrigating my sinuses works just as well as the steroids in the nasal inhaler.  I’m also well enough now that I’ve started doing push-ups daily.  A few months ago, it hurt just moving my arm.

I later found out, after I started going to the psychologist, that it’s common for pain meds to work differently or not at all for autistics.  It makes sense.  The way pain meds work is by tricking the brain, but they’re designed to work on a typical brain.  Autistic brains work differently.  So, I now know that hydrocodone has no effect on me.  When I’m hurting, I haven’t found anything that takes the pain away completely.  Therefore, my aim is to get the pain to a tolerable status.  Now, usually just 2 extra strength acetaminophen will get it to that point.  If it doesn’t, I take a meloxicam; if I’m still hurting, I take a tramadol.  I still occasionally have to use ice or heat on my chest, but it’s so much better now.  I also learnt that the reason I was in so much pain when the doctors and everything I read said it should be “mild to moderate pain” is because of the autism.  Apparently I feel pain differently.  Some things that should hurt a lot don’t hurt much or at all, like when I stepped on what my dad called a 16 penny nail. It never hurt at all, although I did feel it go into my foot and come out; the doctor and nurses couldn’t believe it.  Or when the dentist and dental hygienist were amazed I didn’t have any pain whatsoever when they found 19 cavities–bad, deep cavities–caused by some of my medication.  Some things that should only be mild or moderate pain, or shouldn’t hurt at all, however, are excruciating–like the endometriosis apparently.

People sometimes ask me what it feels like, the chest pain.  I tell them, if they’re women, to imagine their absolute worst menstrual cramp, but in their chest.  It’s actually the exact same thing.  Menstrual cramps are the endometrium stripping away.  When I’m hurting, the cyclic pain, not the everyday pain, it’s exactly that–the endometrium is stripping away.  It just happens to be in my chest.  I think the pain is worse in the chest because of the location and other symptoms it causes.  I think the reason I have everyday pain that’s not as bad as the cyclic pain is because there’s something there that’s not supposed to be there.

2014 was the year I went through my journey to get my endometriosis diagnosed.  It was probably the worst year of my life; but it was followed by 2015.  2015 was the year I went through my journey to get my autism, anxiety disorder, phobias, and dyslexia diagnosed.  2015 was probably the best year of my life.

The Rare Case of Endometriosis

Silverware tasting

So, since about high school, maybe earlier, I’ve been able to taste the metal in silverware. I thought it was because our silverware was old and the finish was coming off. No one else in my family could taste it though. It’s absolutely disgusting and ruins the taste of my food. I had to go through several forks and spoons before finding one I could use. So, fast forward about 15-20 years to now. We get rid of all of our old silverware and finally get new stuff. We have 2 brand new sets of silverware. I grab a fork and it’s absolutely disgusting! It’s the worst fork I’ve ever tasted in my life. I grab another fork and I can taste it, but barely, so I use it. I now realize that it’s not that the silverware is old, it’s because I’m hypersensitive. I learn that the ones that taste disgusting are cheaper without much of a coating, if any. The ones that I can just barely taste and can tolerate are more expensive with more of a coating. So, of course I research this and a lot of people have this issue, even that they start tasting them later in life like I did. I don’t remember being able to taste them as a child. It’s common in autistics, but some non-autistics can taste them too. I now know that I need to use more expensive silverware. Thankfully, our more expensive set looks different, so I have to go through the forks or spoons to I find one that’s good for me.

Silverware tasting

Why I’m going to the neurologist

I’m kind of nervous and excited both about going to the neurologist’s today for the first time. It’s not anything dire, but my psychologist recommended I go to get a neurological evaluation; mostly because my long-term memory is very good, but my short-term memory is not so good. This is common for autistics and I’ve always told people that this happens to me, but he wants to make sure there’s not something going on neurologically affecting my memory. I also get pinched nerves very easily throughout my entire body, which I have for as long as I can remember. My GP doesn’t seem too concerned about it, I just take anti-inflammatories and ice it; but I’m going to ask the neurologist about it. I’m also interesting in hearing what the neurologist has to say about the mixed-signals my brain sends, which my psychologist says is also common for autistics. My brain has trouble distinguishing temperature. I’m typically cold when everyone else in the room is hot, or vice versa. I’ll be covering up and shivering, while everyone else is turning on fans and sweating, or vice versa. A bath of hot water feels both hot and cold to me simultaneously, and I get goose bumps in a hot bath. Likewise, ice feels hot and cold to me simultaneously. I logically know the bath is hot and the ice is cold, but I actually get both sensations at the same time. It’s always been weird to me, even though it’s my norm. My brain also has trouble knowing when I’m in pain and how much. Things that I’m told should hurt a lot don’t hurt at all, or very little. Like when I stepped on a huge nail. I felt it go through my shoe, I felt it go into my foot, I felt it come back out of my foot and through my shoe, it never hurt. The nurse and doctor were amazed. I’ve gotten deep gashes before that just stung a bit. Likewise, things that shouldn’t hurt at all or not much are sometimes excruciating. Doctors don’t believe me how much pain I’m in because they say it shouldn’t hurt that bad. Because of this, a lot of pain killers don’t work for me; and the ones that do only lessen the pain. Hydrocodone has no affect on me whatsoever, good or bad. So, I’m excited to find out what the neurologist has to say, but I’m nervous too.

Why I’m going to the neurologist

Not knowing how to play

I always knew I was different.  I always knew that I had trouble making friends and that I didn’t know how to play with other kids.  I always knew that I was often left out and I didn’t really know why.  I always knew that I didn’t understand other kids, or people in general, and what they did and why.  Like I said in a previous post, it’s always felt to me like I was an alien from another planet trying to figure out an unfamiliar species.  Although, that’s an analogy I’ve just recently come up with.

I think in pictures.  I thought that everyone thinks in pictures, but apparently not.  Most all thoughts in my mind are visual, including memories.  Memories are like movies to me, I can actually watch them play out in my mind.  Again, I thought everyone’s mind worked this way, but I’m told that they don’t.

I don’t remember most of my childhood, and almost all of the memories I do have of my childhood are bad.  One of my earliest memories is of kindergarten, the only memory I have that I know for sure is of kindergarten.  In this memory I have of kindergarten, I’m standing in the classroom’s play kitchen area holding some kind of play food.  What exactly it is is not clear to me.  I’m silent, and I’m just standing in the center of the play kitchen area holding it and watching 2 or 3 other children (I think at least 1 boy and 1 girl) play together.  They are talking to each other and setting the table and I’m just standing there watching them and holding whatever I’m holding silently.

At that age, I had a severe speech impediment; everything that came out of my mouth sounded like baby babble.  So, I never spoke unless I absolutely had to because it was always a guessing game for the other person as to what I was trying to say and it was extremely frustrating for me.

I’m standing there watching the other kids play, silently.  I want to play with them; I want to interact with them.  I don’t know how.  I can’t speak; but even if I could, I don’t know what I am supposed to say or do.  Am I supposed to get things for the table?  Am I supposed to sit at the table?  Am I supposed to get food?  Am I supposed to serve food?  Even at that age, I already experienced anxiety, although I didn’t know that’s what it was called.  I have anxiety over the fact that if I attempt to play with them that they will reject me, that they will tell me to go away or that I am doing something wrong.  The other kids just all seem to automatically know how to play and what to do like it’s no big deal; it’s natural for them.  I want to join in, but I don’t know how, so I just stand there watching them and thinking.  A boy then comes up to me and says something like, “I need that,” as he takes whatever I’m holding from my hands.  I flinch because he surprised me, but I don’t really react.  I don’t say anything or do anything.  That’s where this memory ends.

I also remember, generally, that I hated recess as a child.  It was boring.  It was unstructured, I like structure.  I had no friends to play with.  I would spend the entire recess on the swings if I could.  Or, on the merry-go-round, or going down the tall slide.  Sometimes I would just sit and watch other kids plays.  I was always alone.  I remember one time when my entire class got time out at recess because the teacher was punishing the entire class for something that most of the class, but not all, were doing.  I don’t remember exactly what it was, but it was probably talking when we weren’t supposed to.  Considering I hardly talked, I’m quite sure I wasn’t talking; but I was part of the class and the whole class got time out, so I got time out.  I was actually happy about it.  I actually smiled and thought, “Good, I have a reason to sit on the wall and not play.”  I was thinking, “I don’t have any friends and I don’t like recess, so this is good.”  I even remember being disappointed when the teacher told us to go play after a while, I wanted to continue sitting on the wall.  I even tried to continue sitting on the wall, but the teacher made me go to the playground.  I then just sadly sauntered over to the playground to sit and watch the kids alone like I usually did.  At least on the wall I would have been farther removed from the rest of the kids, thereby being less noticeable.  Although I wanted friends and I wanted to play, since I didn’t, I would rather not be seen at all.  I guess I didn’t want them to see my sulking like I always did watching them.

At some point in my childhood, I heard some girls ask the teacher if they could stay in at recess and help her.  I thought, “Oooo, that’s a good idea.  I hate recess.”  So, I managed to ask her if I could stay in too.  I remember I had a lot of anxiety asking her, as I did anytime I spoke.  I was so happy she let me stay in and grade papers or take things down off the wall, or clean up trash in the classroom, or anything else she needed help with.  I guess she thought I did it too often, because eventually she made me start going outside to recess where I went back to swinging by myself and watching the other kids.

I remember from my childhood countless nights crying and saying to myself that I don’t have any friends, no one likes me, and wondering if they’d even notice, much less care, if I wasn’t even around.  I always shared a bedroom with one of my siblings, so I learned from a very early age how to master the art of crying silently so that they didn’t even know I was crying.  My social anxiety was so severe, probably partly because of my speech impediment, that I never confided in anyone, not even my parents or siblings.  I don’t think I ever told anyone my issues until adulthood.  I just lived my life one day at a time, feeling like I was barely keeping my head above water.  I don’t think I enjoyed life much, and I still don’t  much of the time.  I was just surviving the best I could, and I still feel like that most of the time.  Looking back, I now realize that I was having autistic meltdowns.  I knew I was different, but I didn’t know how or why.

When I was a kid, I now realized, I was depressed and anxious most of the time.  Now, I’m still anxious most of the time, but I’ve learned how to take care of it better; and I still have bouts of depression, but it doesn’t seem as bad or as long-lasting as when I was a child.  As a child, I remember thinking over and over again that one day I’d grow up and be an adult and my life would be better.  I thought that at some point I would learn how to make friends and how to interact with people and that I would be just like anyone else when I grow up.  I thought that I was just slow at learning these skills and that I’d eventually catch on.  Well, I didn’t know that I was autistic, that my brain doesn’t work the same way other people’s do and that it never would.  I was half-way right though.  I have learned over the years how to communicate better and how to assimilate into “their” world, but it’s still foreign to me.  I still struggle every day, I still have great anxiety as to whether I’m going to be accepted and whether I will mess up, and it’s all absolutely exhausting.

Throughout my childhood, I wanted to have friends and I was always jealous of my siblings, who did have friends.  I tried to be included whenever they had friends over; but I usually got the door slammed in my face, sometimes literally.  I understand it now.  They wanted to be with their friends and get away from their sister with whom they had to deal all the time.

I think I may have a different definition of the word “friend” than others.  As a child, I “played” with the neighborhood kids.  Although, I felt left out much of the time and was always the follower, never the leader.  I was in Girl Scouts and would do Girl Scouts events with the girls in my troop; but again, I usually felt left out and alienated.  I realize now that it wasn’t their fault; it’s just that I didn’t know how to interact with them because my brain doesn’t work the same way as theirs do.  I guess that, technically, the neighborhood kids and the girls in my troop could be considered my “friends;” but I never truly used that word for them.  By “friend” I meant that I wanted someone outside of my family with whom I would not feel left out and that we could do things together, without either of us really leading or following.  I wanted someone with whom I could truly play, which was hard since I didn’t know how to play.

By this definition, I got my first friend in 2nd grade.  We actually would hang out together on the playground and I even went with her family to a pizza restaurant.  I was so excited that I actually had a friend with whom I could play and do things, someone who met my then definition of the word “friend.”  It didn’t last long though because we went to different schools the next year.

Today, my definition of “friend” is someone outside of my family with whom I feel comfortable, means a lot to me, and with whom I actually go and do things occasionally.  Today, a true “friend” to me is someone with whom I can be truly honest and who won’t leave me behind or make me feel bad when I’m having trouble living in their world.  It’s someone who doesn’t care that I’m different and accepts me completely for who I am.  Today, there is only one person whom I consider a true friend.  Sure, we have family friends and I have Facebook friends and co-workers with whom I’m friendly, but there is only one person who fits my definition of a true friend to me.  It took me decades to be okay with only having one friend.  I used to want to have lots of friends.  But now, I realize that it’s okay that I only have one friend.

I still don’t know how to play.  When I’m with my 4-year-old nephew, I’m happy just to watch him play.  But, he usually hands me a toy and I just hold it and not know what to do with it, much like when I was a child.  Sometimes I’ll come up with my own way to “play” with the toy, but he usually finds my way “wrong.”  My way of “playing” is usually by myself and sensory.  I’ll be rolling a toy car along my arm or leg because I’m very tactile and like the texture and feeling, or I’ll be feeling the bristles or hair or fur on whatever toy or doll.  With blocks or Legos and things like that, I usually put them in some kind of pattern, by size or color.  I like to watch how things move and listen for patterns in sounds, so I’ll be doing that with toys as well.  He thinks that’s wrong.  He wants me to use the car to pretend to drive on the ground, I’m not so good at pretending.  He wants me to use the doll to talk to his doll, I don’t know what to make it say.  He wants me to build something with the blocks, but I usually want to build something that he doesn’t or I put blocks in the wrong places.  I try to indulge him because he’s a kid, but it’s actually hard for me even today as an adult.  I still don’t really know how to play “the right way.”

Not knowing how to play

Why I Can’t Go to Your Event

I’m agoraphobic.  I never considered myself to be agoraphobic.  I really didn’t know what it was.  I thought I knew.  I thought it was the opposite of claustrophobia, closed-in places.  I thought agoraphobia was when someone was afraid of wide-open places.  Well, I was wrong.  At the second visit to my psychologist, he had me do a 2-hour questionnaire.  The questionnaire was to determine a basic, overall look at what issues I have and what we need to work on.  Based on my answers to the questions, he determined I was agoraphobic.  I didn’t admit to him that I didn’t truly know what that meant.  I would today; but at that time, I hardly knew him and didn’t quite feel comfortable with him yet.

Dictionary.com defines agoraphobia this way, “An abnormal fear of being in crowds, public places, or open areas, sometimes accompanied by anxiety attacks.”  If you Google the word “Agoraphobia,” you get this definition, “Fear of places and situations that might cause panic, helplessness, or embarrassment.”  When I looked up the word, and then did some research on agoraphobia, I realized that I am, in fact, agoraphobic.  Although I really never realized it, I do have this fear.  I never realized that I was actually afraid, I just knew I didn’t want to go; I’d rather stay at home at any cost.  Now, I realize that the fact that every day it takes a considerable effort to mentally prepare myself to leave the house and it’s usually physically difficult to make myself get out of bed and leave the house, means that I am, in fact, agoraphobic.  I mostly have the fear of embarrassment, but also of being in public places because I don’t like the way I feel in public.  I feel anxious, overstimulated, and exhausted.

People think that I am just lazy, or boring, or just being difficult when I don’t want to go places; or, they think that I am being rude not going places.  What I couldn’t explain before, but I’m getting better at explaining now, is that I often truly do want to go.  Any time I’m invited somewhere, I truly struggle with whether I’m going to go.  I usually do want to go.  It’s just incredibly hard for me.  People don’t get it.  They say, “Well, if you want to go, go.”  It’s not that simple.  I know that going means that I have to leave my house.  My house is my comfort zone.  It’s my safe place.  It’s where I feel the most comfortable and where I can go into my bedroom with my black-out curtains (I can’t see my hand in front of my face for about 20 hours out of the day it’s so dark) and get beneath my 22 pound weighted blanket, put my ear plugs in and sleep when I need to; or listen to my “feel good songs” playlist on YouTube to calm me down. Or, I can take a chamomile bath, which sometimes works the best.  I have the ability to do what I need to do at my house to reduce my anxiety.

When I leave my house, not only am I out of my comfort zone and don’t have the tools that help me the most; but, I know that anytime I leave the house, it means that I have to deal with people.  I don’t like people, in general.  I much prefer other animal species.  I mean, of course there are specific people I like–some more than others; but, in general, I don’t like the Homo sapien species.  People are too judgmental, too illogical.  They are too complex for me.  Their feelings and emotions; their thoughts and facial expressions; their rituals and actions and things.  I often don’t understand them; much like they probably don’t understand me.  I often feel like an alien from another planet, quizzically observing a fascinating species.  Sure, I have feelings and emotions and thoughts and facial expressions too; but, mine may not be the same as theirs, and it’s hard for me to understand others’ that are not mine.  I do realize that people can be compassionate and caring and not everyone is the same.  There are logical people.  I just mean, as a whole, in general.  However, I always try to be kind and courteous and friendly.  I’m terrified of someone thinking I’m not.

I feel, though, that I understand other animals much better.  Animals, such as a dog, are loyal; they are caring; they make much more sense to me.  I understand why my dog always has to run and get a toy whenever you call him.  He’s anxious, the toy comforts him.  I identify with that.  Animals also don’t judge, for the most part.  Sure, an animal can sense when a person is dangerous, but they don’t care if you have an “odd” expression on your face or if you say something “odd” to them.  They also don’t talk about “weird people” behind their backs; or, at least, I can’t understand their language if they do, so it doesn’t make me anxious.  Animals have actually been proven to comfort people, make people less anxious.  It’s true.  When I’m anxious, hugging my dog helps.  It’s nice that at the first sign of a whimper out of me, my dog perks up and looks at me, concerned.  He will then come over to me and just calmly sit in my lap (after grabbing his toy to help his own anxiety of course).

I love people watching, as long as they don’t notice me and I don’t have to interact with them.  I analyze everything in my life, so I’ll analyze their behavior.  I’ll try to think of why they said something they did or why they act the way they do or why they have that facial expression.  It’s difficult for me, but I think it helps me to understand them better.  I’ve been doing it all my life.  I mean, isn’t that how babies and children learn, by watching.  I still do that, honestly.  I still, at the age of 31, watch people to figure out what I’m supposed to do, or what I’m supposed to say–how I’m supposed to react.

I much prefer to be alone and to be left alone so that I don’t get thrown into the neurotypical world.  But, since autistics are in the minority and we all live on this planet together, we have to often interact with neurotypicals; and it isn’t usually easy.  We’re different.  We think differently, we behave differently.  Even though, at least in my case, it isn’t always noticeable that I’m thinking differently or that I don’t understand.  Almost everyone is shocked that I’m even autistic when they find out.  I’ve lived 31 years “pretending to be normal” and watching and learning how to do just that; I’ve gotten pretty good at it by now, but it’s still difficult and causes great stress and anxiety.  I’m now learning how to ask when I don’t understand things, whatever that may be.  Being tossed into this world that I don’t really understand is hard, it always has been.

If I say something “odd,” if I have an “odd” look on my face, if my clothing is perceived as that of a “slob,” if I don’t understand something–these are all things that cause great anxiety when I leave my house.  I’m learning to not care if I’m “odd” or different; I’m learning to not only accept who I am, but to embrace it.  But, that being said, it is still extremely difficult if someone reacts to me being “odd.”  They usually don’t even notice that they’re offending me or hurting my feelings.  I went from being a child who hardly ever spoke to anyone, to now having conversations with customers I don’t even know at work.  I’ve gotten pretty good through my observations at knowing how to act and stuff; but if and when I slip up, it’s incredibly embarrassing for me.  I try my hardest not to show it, but it’s there.  And the anxiety, it’s almost always there.  Sometimes the anxiety is a little better than other times, but it’s almost always there.

I’m also hypersensitive, in every sense of the word (no pun intended, honestly).  But literally, all my senses (hearing, vision, smell, touch, and taste) are all hypersensitive.  I’m also hypersensitive in my emotions.  It doesn’t take much to “set me off,” in any emotion really.  In my house, my comfort zone, I can control the noise (usually), I can control the lights, etc.  When I go out, the lights are too bright, the sounds are too loud, there are smells that bother me, people who don’t know about my hypersensitivity touch me on the arm or back or something without even thinking.  These things all contribute to my anxiety.

Here is a typical day for me.  At work, the lights are way too bright for me, there may be lots of customers there and so there’s lots of people talking or just moving about, they may be cooking something in the break room and the smell is coming through the air ducts, then someone may touch me on the shoulder without thinking.  All that sensory input is enough to make my skin crawl and make me incredibly anxious, but then you add the fact that I’m surrounded by people whom I have trouble understanding and don’t truly understand me, I have the constant fear that I’ll do or say something “odd,” and I’m not in my comfort zone where I can escape and do what I need to do with the tools I need.  Sometimes it’s unbearable.  I manage, I cope, I “pretend to be normal;” but I can’t wait to get out of there and get home–back to my comfort zone.  It’s absolutely exhausting; nearly every single day, I go home, eat, then fall asleep.  Then, I have to go and do it all again the next day.  It seemingly never ends.

This is why I need extra days off.  My psychologist recommended it; but even before he did, I knew I did.  When I say “off,” I don’t mean just from work; I mean, I need extra days “off” from “pretending to be normal.”  I need days at home to rest and not have to deal with all that over-stimulation and anxiety.  At home, it’s still there; it never goes away.  It’s just a whole lot better.

So, one of the reasons I haven’t been to church in so long is the same reason why I have to think long and hard as to whether I’ll go somewhere I’m invited.  I only have 2 days in the week that I can stay at home and relax, Thursday and Sunday.  Every other day of the week, I have to go out of my comfort zone and pretend to be normal and deal with everything.  Over time, the anxiety and stress build up in my body.  By taking a day off from the world after 2 or 3 days, I’m able to decompress without letting the anxiety and stress build up as much.  I can let that anxiety and stress go down some before inevitably having to build it back up.  If I don’t get that day off,  it keeps building up more and more until I can’t hold anymore and I have a meltdown.  More days off more frequently equals fewer meltdowns; and the meltdowns I do have aren’t as bad.

I’m learning that I can only handle being out of my house for short periods of time over only a few days at a time.  When I travel, it’s especially hard.  I try to duplicate my comfort zone wherever I’m staying, whether it’s a relative’s house or a hotel; but it’s never the same.  I do the best I can, but it’s always hard.  I typically will have a meltdown, either while still travelling, or when I get home.

So, please know that I truly do want to go to your birthday party or baby shower or wedding or funeral or whatever the event is.  I truly do want to go to dinner or to the movies or to that sporting event or concert.  It’s actually really hard for me to say no and it often makes me feel guilty not going, but I have to decide if going is worth what I know is inevitable if I do.  Is going worth the anxiety; is it worth having a meltdown later?  Going often depends on my schedule.  How many days in a row do I have to go out in to the world before I get a rest day at home?

I’ve spent 31 years ignoring this and I have had 31 years of seeing the result.  It’s only in the last year that I’m learning what causes my meltdowns and how to help reduce them.  So now, I’m trying to truly control them to the best of my ability.  I’m learning what I need to do.  I’ve always not wanted to go places, but I often went anyway not really understanding this whole process I’ve tried to explain to you in this blog post.  I’ve paid for it with constant meltdowns most of my life.  When I worked 5 days a week without a day off in the middle, I’d go home and have a meltdown nearly every single day.  I even had a handful of meltdowns at work.  Now that I’ve learned how to better control them, I typically have 1 meltdown a week; although, it’s typically not nearly as bad as before.  I’m learning how to handle it, so please don’t be offended if I can’t leave my comfort zone for you.  I only do what I know is best for me.

Why I Can’t Go to Your Event