PANS in the time of the coronavirus–Part 2

In the last post, I described my thoughts on COVID-19 itself and how it may or may not affect people with PANS-like conditions. This post, in contrast, will focus on how the changes to my routine caused by the world’s response to the threat of COVID-19 has impacted my progress.

While there is never a good time for a pandemic, I feel that this one has almost come at the best possible time for me and where I needed to get to. I had recently discovered some important new food sensitivities and come to grips with the extent to which my brain dysfunction was impairing my ability to focus on the details of, and therefore to get anything concrete done in, not only the areas of my life where I knew I struggled, but also in my passion–science.

Getting to the bottom of this didn’t just require knowledge, though, it required me to focus on very subtle signs of improvement or worsening in moods and overall functioning. Waiting until anxiety, anger, or unfocusedness got quite severe meant going far beyond the point where I could still reverse the effect of an action (e.g. eating a food) before the effect got worse. Furthermore, the changes that had dramatic, immediate effects were often not the ones that ended up producing lasting effects.

Going out and doing things was a double-edged sword. It allowed me to experience something more of life and feel less trapped in a hole, but at the same time I had started using it as a way to “cover up” feeling very uncomfortable and restless inside. When I started making a turn for the worse, it was easier to just reflexively get out there and try to distract myself rather than actually be conscious of the worsening–and let’s face it, nobody wants to constantly be reminded of backsliding in progress. However, it is an often-stated truth that wherever you go or whatever you do it’s impossible to escape your own mind, and being literally stuck for days between my house and my neighborhood made this more tangible.

As a result, I began to focus more on the immediate way I felt in a given moment and how to make it better. I wasn’t waiting to suddenly be full of energy and be able to achieve all my ambitions–and not even to have a “magically” good time out doing something. I became more conscious of trying to avoid “lows” rather than always chasing “highs”. And the lows around the beginning of our shelter-in-place order were very low indeed–I had bad pain in my gastrointestinal tract after eating almost anything. Slowly but surely, I eliminated the foods that were causing the lowest lows (in particular, carrots were one of the worst offenders–something I hadn’t expected since the effect came on slowly and gradually), and discovered that some I’d avoided for years I could then tolerate perfectly fine again. I’m still not where I want to be, but I look at where I was and am amazed I’ve come this far.

I also discovered that while I wasn’t going regularly to places as interesting as the ones I used to go before COVID-19, there were places even near my neighborhood that I had never explored before, and that I could experience some kind of novelty and interest in those, provided that I wasn’t in too deep a mental health hole. I also rediscovered biking, and found some neighborhoods to bike to that I will likely continue going to long after the pandemic. Now that things have mostly reopened, I feel I have a more realistic feel for the amount of power (or lack thereof) my surroundings have on my state of being. They are far from UNimportant, I still ultimately depend a lot on surroundings to have a positive mood, but there are times when the only way out is to look inside. And I know that if I could find things to be interested in walking around my neighborhood, I know I can do so when I can go anywhere, provided I’m in the right frame of mind.

Another thing that has struck me through this pandemic is how NOT surreal things feel. After years of feeling that everything was surreal with the strange states my mind was prone to, the odd anxieties, the feeling that I was living in a time warp, the idea of wearing a mask to go to a store feels really mundane in so many ways. My mental state is still not “normal” (i.e. how it was before PANS) by any stretch of the imagination, but comparatively this spring has been one of the more “normal-feeling” parts of my life, second only perhaps to when I was in graduate school. Then my emotional outlook was actually considerably worse than it is now, but I was also more “wrapped up in life”. It’s been really odd in a way to see others freaking out when I’m more optimistic than I’ve been in quite a while.

This all makes me think about something a therapist said before I went away to graduate school, when I was trying to decide whether to go. She said that I seemed like a kind of person who is really drawn to and needs adventure, and that moving away to another part of the country would be good for me for this reason. It’s true that I am that way, but what it means is that I can be carried along by a sense of anticipation and adventure even when I’m actually just holding on. And life isn’t one long adventure, there are a lot of “boring parts” too. Even when engaging in one’s passion, there’s a patience needed to accomplish things and not just anticipate or think about accomplishing them. And that’s where I get stuck–I can’t get through those lulls in the adventure without falling apart–and where I need support the most.

PANS in the time of the coronavirus–Part 1

The experience since the start of the coronavirus pandemic has felt unique–as I’m sure it has been for almost everyone. It feels as though the world is reacting to *this* virus the way our bodies (as people with PANS-type health issues) react to *most* viruses.

I actually suspect I had COVID-19 back in early March. There was a “bug” going around at work, with the first people already having it around mid-February, and when I got it in early March, the severity was similar to a typical cold or flu, but there were some really unusual aspects of the symptoms. In particular, there was absolutely none of the congestion that I always get very prominently with a cold, and a dry burning tickle in the lower airway. I will not know for sure what it was unless someday antibody tests become widely available in my area.

Back at that time, the official word was that the only cases anywhere near my area involved people who had traveled internationally or those who had close contact with a symptomatic person who had been abroad. By the time an order to stay home went into effect in my area, I had already almost completely recovered from this illness. It’s clear to me from the way things unfolded that at the beginning, the response was very much “barking up the wrong tree” because people didn’t know what to look for with this virus. I wouldn’t be surprised if a while down the road, once we know better how COVID-19 presents in people who don’t get the typical pneumonia, parent groups across the US and even the world will all be realizing that their kids all had something along those lines before or around the time the first official cases showed up. Especially in the PANS community, I think it’s very likely that there are many whose only sign of exposure was a certain kind of autoimmune response that turns out only in hindsight to be typical for this virus.

Whatever it was, it’s the only flulike illness my body has felt like it was dealing with so far in 2020.The PANS-related effects of this illness were more than with a cold (which usually doesn’t cause much of a flare for me), but probably similar in severity to a typical flu–yet again somewhat different in quality. It’s also very difficult to separate anything I felt mentally back then from the effects of my food sensitivities, and from the weirdness of having everyone up to the president of the United States on TV talking about how they don’t want to get a bug I might have!

What is unusual about COVID-19, though, is that there’s enough of a possibility of (non-PANS-related) complications that it seems wise for those who have it to give at least somewhat of a priority to making sure the illness itself resolves rather than focusing entirely on the mental health aspect. In the case of a normal cold or flu, ANY immune reaction that threatens one’s mental health is basically by definition an OVERreaction, so whatever needs to be done to decrease the burden on the brain is a good idea, whether or not it makes the sickness drag on for a few more days. The same is true with a typical flu unless you are in a very high risk group. However, with how little is known about this virus, it’s difficult to tell what an “appropriately strong” immune response looks like.

Though I was not anti-vaccine before this, the situation now with this virus really makes me appreciate the value of being able to achieve immunity in a controlled manner. When exposed to a disease “in the wild”, one doesn’t get to choose when to get exposed, to what strain, and to how much of a dose. Humanity has worked hard to gain the power to do this, and this is something to feel grateful for. Just a generation or two ago, everyone growing up was exposed to diseases with potential complications, and there was no assumption that anything could be done about it.

As for the response of society to the virus, there are things I’ve felt went well, and things that haven’t. As I said up above, it’s clear to me that the initial response at least in the US really missed the mark, and that this led to a rapidly evolving situation that prompted shelter-in-place/stay home orders. While these were successful in flattening the curve, which is a great success, and while health is a cause to which I am normally quite sympathetic, I question whether this evolved into a something based more on fear and people in charge not wanting to stick their necks out than on actually making the most progress.

From my own experience with chronic illness, I know that living for long periods of time in a state of limbo, where one is “holding one’s breath” for fear of things falling apart, is very detrimental, in fact downright dangerous, to mental health. One of my therapists called it “learned helplessness”–a kind of feeling of futility that discourages taking active, decisive steps to address the obstacles in all areas of life. It often seems many people are no closer to actually feeling like they have more power to fight this disease, rather than just hide and hope it goes away. There’s often a debate about how the response to the virus is affecting the economy, but I believe that at least as important a reason to get somewhat back to normal is to prevent this mental state of helplessness from getting too out of hand.

In my second post about the virus situation, I will talk about how I have used this time to make changes in my personal life.

A major dietary piece discovered

In the past three months, I have made a discovery about my gut sensitivity that seems it will turn out to be a huge piece of the puzzle–namely a sensitivity to nuts, seeds, and certain forms of grains. In particular, it seems to relate to the lectin content of the seeds, and explains a great majority of reactions I’ve had throughout the years to many plant-derived foods (Aside from dairy, I’ve always been reactive to a MUCH greater variety of plant than animal foods).

This sensitivity is much more like FODMAP sensitivity (which I also have) than a typical allergy, even if the symptoms have often been allergy-like, in that it involves a large class of foods with a “common thread”–namely being derived from plant seeds–rather than to one specific food, i.e. derived from a particular species of plant or animal. Like with FODMAPs, it’s also cumulative, i.e. having more of one lectin-rich “seed-food” reduces tolerance to others if they are eaten too close together. Plus, after chronic overconsumption of these foods, the inflammation seems to be able to “rub off” onto other things, like the oils that come from seeds, or to eggs (apparently a common one to develop). This “diffuse” quality, of reacting some of the time to a wide range of things rather than strongly and predictably to one or two, is a significant part of the reason it took me so long to discover this problem, even though I believe it has been going on for many years, possibly since my Lyme treatment.

So how DID I come to discover this, fittingly in 2020 (the “year of hindsight”)? Well, throughout 2019 I got stomach/intestinal pains more and more frequently, that felt almost like a combination of a “pulled muscle in the gut” type sensation and a burning. I noticed that drinking beer made them worse, but they often had already started prior–in fact I had gotten into a sort of cycle where I drank beer to get my mind off how crappy I felt from my gut being out of whack, and yet it only made my gut MORE out of whack. Then in December I discovered that energy bars made me feel lousy, as I mentioned in another post. In February, after having completely eliminated energy bars AND beer from my diet, I noticed that then French bread gave me horrible gut pain, and hazelnuts gave me a headache. Then it finally “clicked”. And in hindsight, there had been many signs. Some of the following are here:

-Back in 2015-2016, I sometimes shared bags of hazelnuts with my parents, and I had become convinced that one of them (who both eat dairy) had transferred some dairy to some of the bags, because sometimes all of a sudden I’d get a runny nose after eating hazelnuts, whereas other times I wouldn’t.

-Peanut butter and cashews gave me a runny nose even before hazelnuts did.

-As early as 2013, when eating legumes as vegetables that I didn’t usually eat (e.g. sugar snap peas), I’d get a tingling in my throat and a headache.

-While in graduate school, I noticed that some days my gut felt worse after eating brown rice than white rice (lectins are mainly in the husk, i.e. the “brown part” of grains).

-In the past year, I’ve noticed that I never, ever get allergic symptoms when eating potatoes that are peeled before cooking, but often do from potatoes that are cooked with the skin on, especially if baked rather than boiled or steamed–even if they’re the exact same type of potato (see above, and hot water destroys lectins whereas dry heat doesn’t).

The closest I was to discovering this was back in 2015, after I had my fecal transplant (FMT) for C. diff. It was a “hard reset” for my gut, and afterwards I noticed my symptoms coming back after certain foods. In particular, after snacks (which often contained bread or nuts at the time), I’d have a flare. I suspected gluten sensitivity, and went gluten-free for several months before figuring out that gluten-free foods made me flare MORE than regular bread did. In hindsight, it’s clear why I was so flare-prone with regards to food then… not only was I recovering from C. diff, but I’d just been back from visiting grad schools, and in order to have food with me I could eat, I had taken lots of snacks with me, most of which were seed-derived in some form. In hindsight it’s clear that this didn’t take care of the actual problem, which was seed-derived, “lectiny” things. In fact, now, I find that pasta is one of the grain derived things I tolerate the best, probably because nearly all the seed coating is removed when the pasta is made.

Since I’ve drastically reduced my seed/grain/nut intake, things have started to go in the right direction. However, the fact that it took me so long to realize this means a lot of damage was done to my gut. I now am really prone to an intense, heartburn-like pain in my gut that has been REALLY hard to get rid of, having required a course of Prilosec, periods of going completely off caffeine, and just very, VERY close monitoring of my diet, not JUST the things I had problems with before. However, there are days when it’s virtually gone, and then I realize how much other stuff has improved as well.

I will end this post with a link I found years back, that I lost for months and finally found again a few months ago when I had to reinstall my browser due to a glitch and sorted through all my old bookmarks. It had gotten saved with a really obscure title and that’s why I hadn’t been able to find it before. This woman’s experience with food sensitivities, and their extreme effects on mood and mental state, very closely parallel mine, even though we probably aren’t sensitive to the same foods. I have to believe that there’s a whole group of us with these issues, all having wondered for years if we’re the only one: http://camoo.freeshell.org/why.html. She has had other issues, like an unhappy childhood, that I can’t relate to, but the gut-brain connection I haven’t seen described in more detail and with as much clarity anywhere else.

 

Needing social connections

Ever since I got Lyme, or rather since Lyme became chronic, I’ve felt socially isolated. In truth (as I’ve said before on this blog), I was socially isolated even BEFORE Lyme, because I’m on the autism spectrum and never really wanted friends growing up. Around the time I got Lyme was when I started to get interested in connecting with others, and that need became much more pressing when I started to feel trapped in my own “personal hell”, dealing with something my peers couldn’t understand, and that kept me from enjoying life the way I wanted to as an adolescent.

Very close to a year ago, I had the first romantic relationship of my life. I’m actually wondering whether, looking back, I will in fact consider it a romantic relationship, because not only did it only last a little over a month, but less than halfway into it there were already signs that we weren’t compatible. As soon as the excitement of “I finally have a girlfriend!” from our first date began to wane, the clashes started showing up. It was in any case far more of a romantic relationship than anything else I’ve ever had, as in middle and high school I didn’t date at all, and then by college I was already deep into Lyme. When I started to go to aspie groups, there were a few girls who were interested enough in me to try dating, but I was playing along just because I was desperate to try and not because I found them at all attractive. Conversely, all the girls I had crushes on showed no interest back.

From the ways we weren’t compatible, I learned some things. Firstly, I learned that I don’t do well in a relationship with another person who also has what I would call “control issues”. What I mean by that is a need to constantly be in control and/or to self-direct things to an extent that it sometimes gets in the way, when getting true strength and confidence means being open and/or vulnerable enough to truly self-examine and/or to seek and accept help. These are the people who stay up even when they feel tired because of all the things they want to do, who hold in natural bodily functions, who always insist on doing things their own way, who always have to “be right”, etc.

I myself often have real difficulty accepting guidance in my life from anyone who I feel (whether or not it is actually true) is not aligned with how I already see myself and where I need to go. While this has helped me avoid things like peer pressure and enabled me to remain “true to myself”, there have been cases where my inability to even slightly question my own self-chosen path kept me from solving certain problems relating to PANS and life in general. Therefore, I benefit from being around people who appreciate my need to be self-directed, but who can help me learn to let go and step into the unknown more, and can allow me to see that accepting the direction and help of others sometimes doesn’t mean I can’t still be myself.

This girl I dated has some of those same control issues, and it drove me crazy because I felt like I was fighting both her and myself at the same time. Plus, I tend to gravitate toward the “teacher” role in life in general (I tutored math before I got my current job), and being around people who seem “unteachable” doesn’t help me feel secure in my own identity. She constantly told me how smart she thought I was, yet I would have *felt* much smarter if instead of the constant lip service, she actually followed in my footsteps and took my advice once in a while. I have found that it’s common among autistic people to have these issues, and she’s also on the spectrum, but I hope there are some who aren’t like that.

Just as importantly–if not more so–I need people who respect all I have been through in my struggle with Lyme/PANS. There was a time where I pointed out to her something that I thought she needed to get checked out about her own body, and eventually she agreed to do it, but after the first appointment where a doctor told her it was “nothing”, she gave up and refused to continue. She had no clue of the perseverance I’ve had to have to get as far as I have with my own health issues. It became so clear when I went to a Lyme group, and was talking to another guy about my age who also has Lyme. He actually found my theories about how my Lyme is affecting me interesting, even if they were different than his own–he was in no way dismissive and he made me feel validated in having taken the time to figure this all out. Whether in a romantic relationship or just a friendship, this is something I really need.

This brings me back to the lack of opportunities to meet others in a purely social context who are also dealing with PANS/PANDAS/Lyme. I have been to Lyme groups in person, but all anyone ever does there is talk about their Lyme, what medications or herbs they are using, and what doctors they are seeing. I’ve only been involved with PANS/PANDAS groups online, never in real life, but they are the same way. And just typing text is nothing like seeing a face, and having someone you can actually hang out with and do something fun when discouraged by chronic health issues.

The mental health issues that come with something like PANS aren’t like lower back pain or skin rashes, one’s personality and cognitive and emotional traits going in have a LOT to do with how brain inflammation manifests itself in emotions, bad habits, etc. Even though PANS can change one’s personality, it also acts as a magnifying lens to one’s own mental weaknesses and brings out pre-existing tendencies big time. So the fact that I was a huge loner math and science nerd before PANS makes my experience fundamentally different, and gives me very different issues, from that of a social butterfly who had a wide circle of friends, or that of an athlete who derived confidence from pushing his or her own physical body. So I don’t just need help with PANS treatment, I need people who understand my bad days but who also can be friends in helping me through the mental/emotional issues around life more broadly.

Back after a break

Here is the big “What’s new” post I referred to in my last post. A lot has changed in the past two years–in particular I graduated with a Master’s degree from the university where I was for graduate school, and I moved back to my hometown. I’m working part-time in a research position now, and have made some significant strides in understanding some of the mental traps I was stuck in.

One big mental knot I was tied in had to do with my perception of my own capacity for work. Somewhere back in my whole Lyme journey, it became much more difficult for me to remain focused on the details of work for extended periods of time–I guess you could sum it up with the phrase “executive function”. I retained the ability to think in “big ideas”, and the ability to for instance process a complex diagram (these visual things I had always absorbed in a “gestalt” sort of way), but painstaking details like grinding through many steps of algebra, writing complex code, things like that, it would take me forever to sit down and actually start doing them, and then I was very easily distracted. After I went on 5-HTP, this improved considerably, and in my master’s work I got a lot of practice overcoming this, at least as it pertained to more routine work. It’s still not where I ultimately want it to be, though.

Having absorbed this fact about myself into my subconscious profoundly influenced the attitude with which I approached finding research groups to work in, even once it was becoming less true. I would immediately analyze their approach to work, looking for things I thought they were doing “right” and things they were doing “wrong”. Then on some level I saw my main role being to tell them what they were doing wrong, because anything they were doing right they were probably already doing better than me anyway, whereas by taking things in a new direction I would get credit for that. While some scientists in fact found my ideas interesting, needless to say, not many groups like to be told what they are doing wrong, especially by someone who just talks and doesn’t get much done.

I also have a tendency to be hyper-ambitious and try to do things that “no mere mortal” could actually accomplish, and then when they don’t work out, place the blame on things outside of myself for my inability to get anywhere, not realizing it’s partly or even mostly my fault. I’ve always had this to *some* degree, but PANS has made it *much* worse, to where it has practically been the central thread of my life.

My current research position is doing work that is far below my ability, knowledge-wise. It can be depressing because even the people highest up in the lab don’t seem to be doing work that could really use my skills. On the other hand, while at times it can be quite time-consuming, I can get it done–and this in and of itself has been quite helpful for me. Just the act of finishing work chips away at that dread that has kept me from actually *doing* things rather than just *thinking* about doing them. That has helped me in my spare time as well, when working on my own projects.

I have gotten to the point now where I am more self-aware of when I’m unable to complete something because of my own block around getting things done, or when I have chosen something too hard, and rather than lay blame, I work to get through my own blocks. I have begun to see how many times in the past when I felt ready to take on large challenges, it was more that I was in a mood where *imagining* doing work was easy, than it was that I was in a state of mind where I actually could get it done.

I’ve also discovered a bad habit I got into that was making things quite a bit worse, and that is eating sweetened energy bars. I started eating them not too long after I started my current job, because sometimes I was still very hungry after eating the lunch I brought that satisfied my dietary restrictions, and I didn’t want to leave early, so I would pick up an energy bar in the cafeteria. I recently discovered that they make me much crankier and easily frustrated by things.

They also interact with other stuff–like I often drink a beer or two in the afternoon/evening (I’ve gotten in that habit as a means to get away from feeling lousy), and after those bars I noticed that alcohol would in fact make me feel much *worse*. I would often drink more to try and compensate, but it would only compound the problem, since it also has carbs. Once I cut out these bars I felt better within just a few days. I also discovered that of many of the other vegetables and starches that I began to tolerate last fall, I still have to limit them or else the natural carbs in those do the same thing, but to a lesser extent than the energy bars. Now that I’ve identified this, I hope my executive function gets better still.

 

 

Expectations

I know it’s been a long time since I’ve posted. I’m actually in the process of writing a new post that discusses all the things that have happened since I took a break from this blog–which is a lot. However, just today something specific happened that I want to write about. There’s a town not too far from where I live that has a yearly gingerbread house contest in December, where one walks from business to business looking at elaborately made gingerbread houses. I just discovered this last year. Of course, everything in town is decorated so the walk is nice just for that. Also, on one day they have a parade of decorated boats, and that happened to be today.

First a little background about the holidays, and my feelings about them. I feel that since having Lyme, since there has been so much that seems to have been taken *away* from my life and so many “little things” that I can’t enjoy in the same way, there is this need I’ve developed to deliberately do things to escape into a world of “holiday magic” around Christmas time, and have things “be like the old days” as much as possible. With this comes putting more importance and meaning on being happy around that time of year, on having things be “perfect”, and therefore also more potential for disappointment when they don’t happen the way I had planned them.

Last year, despite the fact that I was in a better place healthwise than I’d been for many years, the holiday season brought on such a feeling of “lackingness” that I regressed in my outlook for many months. I just focused on the negative and did things like drinking more even when it made my gastrointestinal issues worse just in an effort to try and feel more in the mood for the holidays–and then due to other things happening, I stayed stuck in this negative pattern for many months after.

With that background, you can understand that I was both excited and apprehensive having a “second chance” with the gingerbread house contest–although last year’s visit to the contest was one of the best days of the holiday season. Last year, when I told my parents about the event, they invited some friends of their own, and not only were some of the gingerbread houses very creative, it was great to for once experience being with “normal people” and actually having a common purpose.

This time it was just my parents and I, yet I knew very well to drive in separate cars so I could do whatever else along the way that I wanted to do and they could do what they wanted–we would only get together when we were ready. I stopped in the town where I grew up and saw a few old places. They stopped to get something to eat at a restaurant, something I still can’t do with my food sensitivities.

Then right after seeing the first gingerbread house, it started to rain. I have always liked rain, and there have been times I have been disappointed at the lack of it. I don’t mean that I like walking for half an hour in a nonstop heavy downpour, especially not without an umbrella–I mean like a light rain when walking in an area with some trees or buildings overhead, or a heavier rain that starts a few minutes before I get indoors when I have an umbrella, just enough to make it feel like an “adventure”. I hadn’t expected rain for today, it was actually supposed to be the first dry day this week, but when it started it was a pleasant surprise because it was just enough to make the atmosphere feel that much more special.

On the other hand, my parents were less than thrilled about walking in the rain. My dad wanted to get an umbrella before the parade, and my mom insisted on waiting for him, meaning I was alone walking to see the remaining gingerbread houses. Furthermore, due to my parents having taken a long time to eat, half of the places participating in the contest were closed already. In hindsight, I should have gone to see the gingerbread houses while waiting for them to eat. But most of all it might not have mattered, because half of the ones I DID get to see were VERY underwhelming–nothing like last year.

I did get to see the boat parade, which I didn’t see last year because I had to leave early for work, and got some nice pictures. Although, I spent a lot of the time trying to call them to meet back up and my dad didn’t answer–I often wonder why he even has a cell phone because he never can be reached on it.

After this I spent a long time thinking about expectations. The best part, other than the parade, was when it started raining, and that wasn’t something I had expected. That experience–of getting to walk around and look at gingerbread houses in the rain–is something nobody can ever take away from me, that I can’t ever be disappointed about NOT having. The same is true about having seen the good gingerbread houses last year, and having seen the parade today. What is too much to ask is that everyone else share my idea of what experiences are fine to skip and which are must-haves, as they have their own expectations and ideas as to what makes a perfect evening. Coincidentally, when I logged in to start writing this post I saw this one from “the aspie girl blog”, which is about the same concept: https://wordpress.com/read/blogs/110971437/posts/509

The thing is, that even if my parents HAD been the type who would have walked fifty yards across flaming coals barefoot in order to see gingerbread houses, that still wouldn’t have changed how underwhelming many of the year’s entries were–yet somehow it *felt* in my mind like they were responsible for “ruining it”. I had a similar experience again on the way home–I had stopped back in the town where I grew up to see their downtown Christmas lights, and was very irked to find that the town was SUPER crowded and I had to go far away to find a parking space. Yet when I got out of the car, it was too cold and windy there and I ended up going to another town where there were also more lights and parking was easy. In addition, it occurred to me that I was only in some sense *able* to feel so picky about how the day at the gingerbread house contest turned out because in general I was doing better than was years ago. I wasn’t full of anxiety, I sleep quite well these days, etc.–in the past, the absence of those would have been “special” in themselves.

More generally, this seems like a metaphor for much of living with Lyme/PANS/etc.–it’s easy to get “greedy” when one starts to feel better and expect “miracles”–however this tends to lead to disappointment and dysfunctional coping strategies that end up setting one back again. I don’t mean one should stop fighting and accept never getting better, but rather that celebrating the improvements that DO happen is often more helpful than stressing out over those that don’t. And there have been a LOT of improvements in the past year, some of which I will go over in my next post.

 

Is nihilism is the true core of 2A?

 

I just saw this video because a Facebook friend posted it. It shows a world in which everyone carries a gun, where trifling disputes end in everyone pointing weapons at everyone else. And at the end, someone’s gun accidentally fires, which results in a bystander getting wounded. The others say this is “the price of freedom”. Obviously this is supposed to be funny, but I couldn’t quite laugh at it, and a little thinking got me to the reason why.

I’ve noticed before that after every school shooting, I can’t bring myself to feel angry at the shooter. It’s not that I like violence or anything of that nature, it’s more that growing up, I had quite a few behavioral issues that, had I not overcome them, could have led to me “snapping” in this sort of way. So I feel a great deal of empathy for the shooters.

Yes, I feel empathy for the victims, too, but my capacity to empathize with them is very much strained by the hateful comments I hear from the victims and their allies about the shooters, and about people with mental illness in general (or at least, people who could be considered to have one). This “villainizing thinking” erodes my sympathy for the victims, yet the shooters rarely villainize the victims after the event is over, no matter how angry they were when they snapped.

Also, there’s sometimes talk of how the souls of the dead are begging us to do something about what happened, and part of me says “how do you know that?” Even if you could prove there are such things as souls, you don’t know that wherever they are they even care.

On the other hand, if I follow my “gut feeling” to its conclusion, then you ultimately get to a situation where someone with a mental health issue (due to something like PANS, Lyme, or whatever) can never be blamed for anything. And of course I don’t want a world where the state has total control over such people, and can lock them up whenever it feels like, can monitor their every move, etc. So putting these together logically, you arrive at a world where when someone with mental health issues harms or even kills people, the official response to the survivors, the families, etc., is “Well, I’m sorry for what happened to you, but that’s just the price of living in a world where people can ‘snap'”.

It would be a sort of “mental socialism”, where everyone has to equally bear the brunt of everyone’s mental issues, yet nobody has any real power to do anything about it. And in fact, like the guy without a gun being blamed in the video, the blame for something like a school shooting might be placed on someone we would consider “healthy”, for provoking the person. It would be a world where everyone is always walking on eggshells, yet uncritically accepts this and never does anything about it.

And the weird thing is, on a raw emotional level the idea of such a world actually feels kind of normal and acceptable to me. I’ve even wondered before if I could be a psychopath because of this, but I’ve heard that actual psychopaths don’t ask themselves if they are one. I think it’s more that being 2A, I’ve been emotionally isolated from others so much of my life that I never developed the same emotional responses that others have to things. This is further amplified by the KBS-like way that neuro-immune issues show up in people like us.

Even when I’m not particularly anxious or even depressed, this “blankness” is still there. And it’s not total absence of any meaning–things like the beauty of the universe and nature hold deep significance for me. It’s just that within the world of people, I feel there is this void there, that never completely goes away even when my PANS symptoms are at there mildest, and even when I’m the most motivated in my own life. I’m wondering if any others feel the same way.

 

I need a chronic illness Skype/video chat group

I’m not a person who likes written text. Not when it comes to providing emotional support–for reading scientific results and the news it’s fine (though even in science I’m a very visual person). Despite being on the spectrum and missing a lot of cues, I’m an intuitive person, who “resonates” with certain people and not others.

I have a recurring experience in chronic illness-related Facebook groups and the like. I’ll exchange a bunch of messages with someone, and then ask if they are willing to video chat somehow. That’s about when most people stop responding.

I think part of it is that people compartmentalize their lives. Quite a few have full “real life lives” even despite their illness, and then come to chronic illness groups and start acting like walking illnesses that just happen to have people attached to them. Whereas I’m there primarily for a completely different reason. I’m there for human connection with someone who understands what it’s like to have over a decade of one’s formative years “stolen” from you. I’m looking for a connection that, even if it’s with someone on the other side of the world, might become closer than any connection I have with anyone in real life, because that person “gets it”. And to feel that, I need more than words on a page.

I’m looking for people who will actually “be there” with and for me–not as some kind of case studies in chronic illness like in a doctor’s office, but as actual, rounded human beings. Human beings who have seen their old friends grow up, progress in their careers, and in some cases get married or even have children, while they are still living at home with parents or trying time after time to finish college. People who “dropped out of life” for years at a time, but are still searching for meaning. People who at times feel so “invisible” in the world of healthy people, their “real life lives” are mostly devoid of emotional sustenance, and so are happy to pursue something close to friendship with people who are in the same boat, by whatever medium is necessary, even if it’s a bit awkward at first.

Some things have changed, others stay the same

Early last winter, I made an important discovery. My body seems like it almost certainly had a severe difficulty converting tryptophan to serotonin, which had profound effects on my gastrointestinal function and my emotional/cognitive functioning. I am now taking 5-HTP, which is more readily converted to serotonin, and within less than a day after starting it, I already noticed significant changes, in particular my attention span dramatically lengthened.

When reading, I used to have to get up and pace around every few minutes, almost couldn’t focus on something without having music playing, and was perpetually antsy. I have realized that this was contributing significantly to some of the difficulties I’ve had in my academic program. I have always had lots of ideas, but never got much concretely accomplished. I attributed this to my thinking style and personality, that I’m creative and imaginative and have never liked mundane activities. I also attributed it in part to all the things I am frustrated about in my life, i.e. when there feels like so much missing, I don’t have the patience doing drudgery.

However, back in high school I used to be able to spend significant periods of time reading things for classes like history and English that I wasn’t interested in. Now I have gotten closer to that again–at least on good days I can really focus. I’ve been doing a research project this semester that required WAY more organizational skills and focus than anything I’ve done before, and yet I made it without too much difficulty.

I’ve also noticed that my gut doesn’t feel “stuck” like it always used to. After eating, it gurgles softly, it doesn’t feel like there’s a lump just sitting there. Also, I had developed a HUGE appetite for protein over the years, and now I have days where that is much less extreme. Now I can get by eating smaller meals a lot of the time, which also gives my gut more of a rest in between.

I also have significantly fewer moments where I feel incredibly bitter about my life out of nowhere, to the extent that it prevents me from getting anything done. However–and here’s where we start to get into what has NOT changed–a lot of the same things in my life that have been missing are still missing. I still feel like the only kid among adults a lot of the time. I still wonder when I will ever meet a girl who is at a similar stage of interpersonal development as I am, who has a similar level of (in)experience and is as impatiently and eagerly awaiting me as I am looking for her.

On the more health-related side, my food sensitivities aren’t much better either. I’m still stuck eating the same ~5-6 things over and over, and of the two foods I started reacting to last fall, I’ve only partly lost sensitivity to one–I’m in fact MORE sensitive to the other now. So I still can only eat at home or bring food with me–it would be hopeless to eat in a restaurant/cafe. I’m hoping some of this will improve over time, but I don’t know if it will.

Also, a big life change is coming up. I’m hoping it will get my life more on track and not more off, but I’m not sure.

The Facebook PDA group

After some conversation with the leader of the Facebook PDA group, I have decided to edit this post to be fairer to them, because I was jumping to some conclusions that were not entirely accurate. Anyway, this is to discuss my experiences with the concept of pathological demand avoidance (PDA).

What still stands is that the “PDA community” (likely as a whole, although the Facebook group “Adult PDA Support Network” is my only contact with them as people) consists primarily of people who don’t meet the criteria for autism or Asperger syndrome, even though many people with autism or AS deal with the same sorts of issues. In other words, there are people (let’s call them “Group 1”) who have demand avoidance issues, “Group 2” who have classical aspie tendencies but NO demand avoidance, and “Group 3” who have both. The “PDA community” is largely Group 1, who somehow consider Group 3 “less PDA” even if some members of Group 3 have more difficulties with the same issues because they’re compounded by being aspie.

This is, in a way, “baked” into the definition of PDA, where some symptoms are literally the absence of autistic symptoms. Like, “focused on people rather than objects” appears on several PDA diagnostic checklists. This isn’t a “symptom”, in that completely neurotypical people tend to be focused more on other people than objects, it’s a “default”.

Making an analogy to the subject of this blog, it’s like if autistic people with Lyme were considered “less Lyme-y” than people with just Lyme, because “having Lyme” were defined as “having a tick-borne disease from a spirochete but tending to have normal social skills”. There’s really no reason for the “tending to have normal social skills” (even if most infected with the spirochete DO) other than to create an artificial boundary.

In practice, as I’ve said in the first post of this blog, most people in the Lyme community do in fact not have autism, and most autistic people don’t show signs of Lyme, which can lead one to experience feeling left out in either community when having both. However, I haven’t experienced Lyme patients being actively critical of those among them who also have an ASD the way I have seen among PDAers. Yet at the same time, while there IS a group that thinks Lyme causes autism, I haven’t seen people with Lyme as a whole insist they are on the spectrum.

In the PDA community, I have seen it stated that aspies are hard to understand, hard to get along with, too intellectually arrogant, sometimes creepy, etc. Yet at the same time they insist they (the PDAers themselves) are “as much a part of the autism spectrum” as Asperger syndrome. In other words, they do much of the same “othering” as neurotypicals due to aspies, while also considering themselves closer to autistic than neurotypical.

I have in no way been convinced by this experience that the PDA-like traits that some of us aspies experience are any less real, or that we can’t work on them just the way “genuine” PDAers would, but rather that PDA groups are not where we need to be going for validation on this.