Sunday, February 23, 2020

Birthday Party, Sleep Study Update, Migraines and Health Issues

Recently I went up to Rexburg to spend a day celebrating my close friend Nancy's birthday. She lives with my sister and I got transportation from a mutual friend. We had a lot of fun talking, playing games, playing with Lego, eating a yummy dinner and a wonderful "Thee Genius" birthday cake, and watching Phineas and Ferb—a series I think everyone should see. At one point most of us fell asleep in the comfy chairs and couches in the living room.

Although I enjoy spending time with friends, I don't get to do it as often as I want to due to poor health and personal responsibilities. One day I want to spend the night or even a long weekend in Rexburg, but right now I can't work out the logistics that would allow me to do that safely. As it is I must bring a HEPA filter with me and stay reasonably close to it while it runs. To sleep overnight I'd have to bring my own specially cleaned sheets, and sleep in a room cleaned and prepared for me, bring my own soap for showering—I have to shower daily—and have an emergency plan in place in case my health "crashes" for some unforeseen reason.


I had to repeat the home sleep study because they didn't get good enough data the first time, but the second time I took an over the counter sleep aid and I slept better. Unfortunately they can't get me into the office for a follow-up appointment until the second week of next month. I hope they have a good idea of what's happening while I sleep and they can do something to help me, because I'm still so exhausted, and stimulants do little to help me.


I've had a difficult few days with increased pain, difficulty thinking, and the always-present anxiety that gets worse when my other symptoms get bad. Yesterday I believe I had another silent migraine which forced me to rest most of the day; I get frustrated when I feel like I haven't been at least minimally productive each day, so I have to remind myself that sometimes the best thing I can do is to just try to recover.

I'm wondering if the cold snap my area has been experiencing has contributed to my health problems. I tend to suffer more when there's more smoke, smog, and general pollution in the air, and there was a hay fire in the area that spread smoke over Rexburg and, to a lesser degree, Idaho Falls.

Monday, February 3, 2020

Cold Hands, Exhaustion, a Sleep Study, and HTML Editing

For the last six months or so I have been struggling with severe fatigue. It doesn't matter how much I sleep, how often I nap, I'm exhausted and struggle to stay awake and coherent. Thinking things through now takes me significantly longer than it used to, and I struggle to make decisions. This is quite frustrating, even demoralizing, and the fatigue seems to exacerbate my anxiety.

I've talked to three medical professionals about it, and none of them, as yet, know what the problem is. The first one all but dismissed it. The second one ran some tests and referred me to the third one. The third is a sleep specialist who sent me home with a device that measured my respiration, pulse rate, blood oxygen, and movements.

Sleeping with equipment strapped to my body was an interesting experience. It wasn't bulky, but it was there and its presence caused me to struggle to sleep most of the night. It was only after I returned the equipment to the sleep lab that they warned me that if they didn't get good data they would have to repeat the test. If they got good data I will learn the results in one to two weeks, at which point I get to schedule a follow-up.

I really hope they have answers for me and it's treatable, because I'm starting to understand why sleep deprivation is considered by some to be a particularly cruel form of torture, not that I'm anywhere near what people who have gone through that had to deal with.


I've also been dealing with uncomfortably cold hands for a few years now. I had this problem when I was younger but it mostly went away, unless I went out in the winter or handled cold or freezing items, but now it's a near constant issue, and I'm wondering if it's somehow related to my fatigue and anxiety. As it is I keep my rooms warmer than most people prefer—between 75°F and 77°F—and a friend made me some fingerless gloves to wear to try to help. I've also talked to doctors about this and for the most part they don't know what to think of it. One suggested I might have Raynaud syndrome, but my symptoms don't really fit that diagnosis.


I spent some time this week working on my HTML editing macros for Vim. I hadn't touched them for almost 8 years and it was time to finally add HTML 5 compatibility, fix some issues, and so on. I've probably spent too much time tinkering with this, but it was fun and hopefully it's useful to someone out there.

Friday, January 24, 2020

Losing Respect for a Man I Admired

This causes me anger, and sadness: Asimov’s Empire, Asimov’s Wall:

"Over the course of many decades, Asimov groped or engaged in other forms of unwanted touching with countless women, often at conventions, but also privately and in the workplace. Within the science fiction community, this is common knowledge, and whenever I bring it up in a room of older fans, the response is usually a series of nods. The number of such incidents is unknown, but it can be plausibly estimated in the hundreds, and thus may match or exceed the long list of books that Asimov wrote.

[...]

"His admirers looked to him as a model of how to behave, and fandom was complicit for years in his serial misconduct in ways that have never been fully acknowledged."

At the risk of restating things already said in the above article...

I have been concerned about the number of sexual assaults and the sexism that still exists today at conventions, and in the science fiction community at large, and to know that one of my previously most personally admired authors is directly responsible for a significant portion of it makes my stomach knot up.

This doesn't change the fact that Asimov accomplished many things of note, and as the article says, he was a very prolific writer. Nothing can change that, but I will no longer view him with the respect I once had for him. How much more could he have done for science fiction if he had had self-restraint, and treated women as they deserved? How many would-be authors and talents are unknown because of his direct behavior and the example he set?

As much progress has been made in making fandom more inclusive, and safer for all individuals, there's still so much further to go, and there are still problems that cannot be ignored. A part of me worries every time someone I know attends a convention because of the legacy of men like Asimov and the men that surrounded him that didn't jerk him up short for his behavior. I do not subscribe to the idea that "it was a different time." Of course it was, but that doesn't make it any more okay then than it would be now.

I don't know if I will be able to read any more of Asimov's work in light of what I have learned today. If I do there will be a big part of my mind preoccupied with this new knowledge, and it will taint the enjoyment that should be my right as a reader.

Despite this disappointment, if I'm asked whether I would want to know about this kind of behavior from any other authors I admire, the answer is an unequivocal, "Yes!" Ignorance does not help anybody, and if we're going to solve these problems we have to hold bad actors to account for their actions. (Although I do not like what "call-out culture" has become because I think love, compassion, and teaching are the best tools to help people become better. I also believe in forgiveness, when it becomes appropriate.)

Sunday, January 19, 2020

New Washing Machine, Water Leak, and Water Heater

After years of intermittent do-it-yourself repairs of a loyal old washing machine, it finally started leaking from a crack in the bottom of the main tub. Replacement of a the tub would have cost close to $300, which is far too much to pay to repair such an old machine, making it an end-of-life event. It would also have taken at least a week to get a replacement tub, which is too long to be without a machine, especially with health problems that require a painful level of cleanliness.

Yesterday I went with my sister to Lowe's and Home Depot to look at new machines. We wanted one with a soak cycle and the ability to select an automatic second rinse at the end of the cycle. We found one that was on sale for something like 30% off that I felt good about, so we decided to buy that one. It's a Whirlpool and it will be our first HE machine. We were hoping for a washing machine with a mechanical timer so we could control it with a smart plug without losing the position in the cycle, but the only ones we could find without a digital timer were made by GE, which my family and I consider to be a junk brand. Hopefully this new machine will last us at least 10 years.

Having done repairs on the old machine, such as replacing the pump, the transmission, and the balance springs—all of which were fun repairs—I hope the new machine is as thoughtfully designed for easy repair.

The washer will be delivered on Tuesday, and I'm excited but also somewhat nervous about it (because my anxiety makes me second guess myself).


Also this week I discovered a pinhole water leak in the plumbing coming from the water heater. We called someone in our local LDS ward who has some plumbing experience, and he was able to replace the damaged copper pipe fairly quickly. Unfortunately, the leak was not discovered in time to prevent water from infiltrating into the control system of the electric water heater, so now it's tripping its reset button once or twice a day. We have the panels open with a fan blowing inside it to try to dry it out and solve the problem. If that doesn't work, apparently the sensors can be replaced.

Edit: We found a bad connection in the water heater, and fixed it. The water heater appears to be fully functional now.

Thursday, January 16, 2020

Self Education and Mentors

Considering the importance of education and since I can't attend college I have tried to pursue knowledge on my own. I have used quality texts to learn C (which I don't use) and PERL (which I do use), and I am self-taught in HTML and CSS. I am not an expert in any of these, but I know enough to do the things I have needed and wanted to do, and I take pleasure in accomplishing these tasks.

Learning to learn is its own skill, and one I have come to value. Using the internet as a learning tool is invaluable, and over time I have been pleased to see so many resources appear online, such as The Khan Academy, Wikipedia, and many others. I can't count the number of times YouTube has been useful in helping me fix an appliance or complete some kind of do-it-yourself task around the house.

Unfortunately I haven't had the time or the mental energy to devote to learning lately. It's been a struggle for me to retain anything mentally, and I don't know why that is, except that I face so many interruptions in my life which derail my efforts to learn. I want to learn Java, but each time I try I fail to make significant progress. It has been my experience that I struggle to learn something new until I hit a "critical mass" where something clicks in my head and everything makes sense.

One thing that would help me tremendously would be access to a capable mentor. Someone who understands Java programming and who has the time to teach me until I reach that critical mass level where I can pursue my Java education unassisted. Then they would take the role of guiding me on what Java technologies to study and only help me when I get stuck understanding something.

Monday, January 13, 2020

On Support Networks

Having a support system is important for everybody, but it's critical for those who struggle with physical and mental health problems. I probably would not have survived to this point in my life without my support network; my family and friends are very important to me, and I deeply appreciate them.

I struggle with the need to depend on others, and even after years—decades—I still find myself trying not to lean on others when I should be asking for their support. Relying on others, even when whey they genuinely want me to depend on them, is one of the hardest lessons I've had to learn in my life.

I try to be supportive of the people in my life, not because I feel like I owe it to them, but because I genuinely care for them and want their happiness. However, sometimes I feel like I take more than I give and I fear people will resent me for it. I don't hold it against anybody if they tell me they need a break from the challenges I present.

There have been plenty of people who have come into my life and gone not long afterward, and I wonder if my individual struggles and needs drove many or most of them off. I'm sure there have been some people that just couldn't be what I needed—or I couldn't be what they needed—and I regret that.

There are some sources of support that I need to learn to utilize better, such as the support systems my church has developed. I also need to learn better how to ask for help, and to recognize what my needs are, especially those that others can help me with.

There was a time when my support network was a lot weaker than it is now, and it made me appreciate how difficult it can be for those that have little or no support in their lives when they most need it. My heart goes out to those who struggle and suffer.

To those who have been there for me: Thank you. To those I have failed: I am sorry.

Sunday, January 12, 2020

"What do you do?" and the Need to be Useful

Since I have physical and mental health limitations I can't be traditionally employed, and I spend most of my time at home. This has challenged my sense of self-worth and left me wondering whether I am a useful, contributing member of society. Being dependent on others is challenging and at times demoralizing.

Some would say I shouldn't measure my self-worth based on these kinds of things, but it's difficult not to, and I feel like I need to find ways to support myself and contribute to others' well-being.

One of the ways I have done that is by working on Amazon Mechanical Turk (MTurk). Unfortunately it is very difficult to earn any substantial amount of money on MTurk—I earn well below minimum wage—and it keeps me tied to my computer all day on most days, making it even harder for me to contribute in other ways.

That said, MTurk is almost the only way I've found to earn money while working around my other daily needs, so in many ways I feel fortunate that MTurk is available to me; it has allowed me to contribute financially the household in minor ways, and enabled me to pay some of my own expenses.

Unfortunately it can be very uncomfortable to answer the question, "What do you do?" because MTurk is far from prestigious work, and I have to explain the whole system every time someone new asks that question. Sometimes I gloss over the fact that I earn so little, but that's not always possible, especially when I'm asked how much I make on MTurk. I know most people are just interested and curious, but a part of me dreads having to answer these questions, especially in social situations that are already difficult for me due to my social anxiety.

I have tried contributing to technical support forums online, such as the Stack Exchange network, and I enjoy contributing minor things to open source projects, such as Vim, but there's a limit to what I can contribute, because I am unfortunately not an expert at anything. I also help moderate a few small subreddits. These are small but sometimes significant accomplishments for me, but they don't lead to rewards beyond the intangible.

I am trying to learn to notice my successes more, and not dwell on my limitations and failures as much. It's a difficult skill to develop.

Sunday, January 5, 2020

How to be a Better Volunteer

Volunteering can be a touchy subject for me, as I have had bad experiences with volunteers, such as those that wanted to come in "weekend warrior" style and solve a problem in as short a time-frame as possible. In doing so they carried out their self-assigned duties in a shoddy manner that had to be repaired a short time later, or worse, damaged property beyond repair.

For example, the last time my family moved there was some mishandling of property that caused damage. We could never have managed the move without the help, but with a little care there would have been no damage at all.

Obviously I think volunteering is important and it can be a significant blessing to those who need it, but volunteers need to be certain they are prepared to do the work that is needed, and not the work they want to do. If not, a volunteer should seriously consider donating their resources in another way.

Volunteers need to know that they may not always understand why a task needs to be done in a specific way or within a certain time-frame; people in need often have requirements that they understand but have difficulty conveying to others without a significant investment in time and effort. It is good to understand why people have their individual needs, but sometimes it is only necessary to understand that there is a legitimate need, no matter how odd it may seem on its surface.

For example, due to my extreme sensitivity to dust, pollen, mold, most cleaning products, and so many other things I need regular cleaning at a frequency that seems obsessive, and often to an extent that can appear to be very eccentric, and sometimes those who are helping me don't believe me. It takes a long time to explain the years of effort, trial and error, and help that led to the discoveries of what exactly works and what doesn't.

I caution any potential volunteer against the idea that, because someone in need rejects a specific offer of help, that they don't actually need or want some kind of help. If ideas are being "shot down" one after another, the proper response is to ask, "What do you need, and how can I provide it?" Then listen. Sometimes the answer will be "I don't know" and sometimes the answer will be complex.

Before eBooks existed I had a lot of trouble handling books due to my severe sensitivities to papers, dyes, and inks. I wanted access to a textbook and a friend was offering to make the book available to me laminated, or in plastic sleeves, which unfortunately was an idea I had already tried it and it didn't help. After a back-and-forth of several minutes my friend figuratively threw up his hands and said, "Well, if you don't want my help..." Admittedly I could have handled that situation better, because I appreciated his willingness to brainstorm ideas. Thankfully it wasn't long before the first eReaders became available and I was gifted an Amazon Kindle.

And at the risk of sounding cynical, please never volunteer unless you intend to carry through. Saying you will do something for someone then never showing up leaves that person wondering. Wondering when the help will eventually materialize, whether they should look for help elsewhere, or wondering if they are going to get help at all.