Burned out and needing to reprioritize

November 16, 2020

I noticed it after the election, though in hindsight it started long before. I tried to ignore it, but I should have known that was a mistake. Still, it gave me the wake-up call I’ve been needing.

For a while I was feeling better than I had in ages. The crisp fall air was delightful, and with the cooler air I had less inflammation. I enjoyed better sleep with the fresh autumn air coming through my open bedroom windows. I was taking 2 walks every day, and one of them was longer than my previous once-a-day walks had been. I was doing pretty well, and thought it would continue at least through the fall and winter.

Then on that beautiful Saturday, we got the election results. It was like I had been holding my breath for months, and I could finally exhale. What a relief! I was having a socially distanced visit with a friend, our first time seeing each other since this had all begun. We had met up in a suburb between where we each live, and had taken a walk. We got the news after the walk, as we stood across the street from each other, chatting. First there was stunned disbelief, then jumping up and down (her), texting everyone I could think of (me) and dancing in the street, literally (both of us.) I was excited all day long.

But here’s the thing about adrenal fatigue: any type of stress on the body can’t be handled. Bad stress causes problems, but good stress also causes problems. I explain it like this: winning the lottery would probably have the same physical impact as the death of a loved one.

So, after many months of the pandemic, a lot of isolation (I live alone and have no one I can be in a bubble with, so I haven’t had any non-medical human contact, even a hug, in 8 months), fear over the election, and then election-related celebration, my body couldn’t take any more. The good thing is that I didn’t have the kind of fatigue “crash” that I have had in the past. Maybe the medication is helping or maybe it was something else, but I’m grateful for that. Still, I felt it, but I pushed myself anyway to keep doing things. I did stuff around my home. I brought my car in for work. Each day, I felt it coming on more and more. Then on Wednesday I had a sore throat and a slight cough. Uh oh.

I’ll interrupt myself here to say that I know fatigue, sore throat, and cough are Covid-19 symptoms, but I was 99.9% sure it wasn’t Covid-19. These are the exact symptoms I get whenever I have adrenal fatigue issues. The cough wasn’t regular – it was one cough every hour or two, a small one, and it had nothing to do with chest congestion. The sore throat has more to do, I think, with my thyroid getting inflamed. So while Covid crossed my mind, it was hours after I’d already assumed this was my usual adrenal stuff. These are the warning signs, the “I better rest NOW or else I’ll get really sick” signs. That’s what I was paying attention to.

So by Thursday I knew I had to rest, and I did. I felt sort of gross and forced myself to shower, which took far more energy than I’d have liked. Aside from that, I rested all day. I ate leftovers. I watched lots of YouTube knitting videos. I crocheted and knit, read a book, watched tv, barely left the couch. It was just what I needed.

On Friday I was still a bit tired, so I spent another day watching YouTube videos, this time about decluttering (something I have been working on.) I felt inspired, so I put away a few things, and made notes about other things I would do when I had more energy. That little bit of activity felt good, so I figured I would be ok the next day. Usually I only need to rest for a couple of days if I listen to the warning signs. (If I ignore the warning signs, I end up sick for about a week and a half, so it’s worth paying attention.)

But then Saturday rolled around. I was still a bit fatigued. No problem, I could put off the world for another day. I watched fewer videos, but still rested. I thought about taking a walk. After several days of rain the sun was out, but the idea of expending that much energy was too much, so I stayed in. Watching videos and reading a book felt like such a luxurious treat! I cleaned up around my apartment a bit, finally clearing the crap off my coffee table for the first time in ages and putting away the clutter that had accumulated in a corner of my living room. This felt good.

Then it was Sunday, and I knew I was ok and should go back to “normal.” The thing is, I didn’t want to do normal. Normal for me felt like a job. And for the first time, I realized that normal had become a job! I was spending so much time on volunteer work and some small bits of paid work, and feeling the rest of the time like I needed to check off items on my personal to-do list, that I wasn’t taking time to relax. Watching a knitting video felt like a luxury I had to squeeze in, and spending time on that instead of on something that was supposedly “productive” was stressful. WTF? I’m disabled. I’m unable to work. So what am I doing? I’m pushing myself to work as much as possible anyway. Hmm. Not good.

Granted, I’m not “working” that many hours. I don’t have many “good” hours in a day, and I have to spend a lot of time cooking, cleaning, exercising, doing physical therapy, etc. Still, I am trying to do too much with my remaining hours. That’s why I have multiple posts I have been wanting to write for this blog for weeks, but haven’t been able to find the time to write any of them. I am writing this now only because I haven’t quite returned to my “normal” routine yet. Even so, my list for today has way too many items on it: a video call with my mom, a video call with someone who wants to pay me for some work that I don’t have time for but don’t want to turn down, taking care of some financial stuff, working on a book that I want to write, doing laundry, decluttering around the house a bit, watering the plants, writing this post, taking a walk, doing my physical therapy… that’s already way more than I have the time or energy for. Plus, I should really shower and leave time and energy for meals. I am trying to do too much, and it’s leaving me burned out.

Taking four days away from the world has done me so much good. It gave me the physical rest that I have so badly needed. It gave me emotional rest. But it also gave me insight. What I am doing is not working, and something has to change. I have always had a lot of drive. When I was in graduate school, working towards a PhD, at one point I worked as a teaching assistant and also the manager of my apartment building, while also volunteering as vice chair for the university’s Americans with Disabilities compliance board. Sure, I was young and still had energy, but YIKES! That was a lot! I’m not good at doing things part way.

On top of that, there’s the problem that while my body doesn’t function the way I want it to, my brain does, and my brain wants to do lots of things. I have a lot of interests, and I keep adding more and more, but not taking things away. During the pandemic I have added one new hobby, one new volunteer job, and one new paid job (the paid job is short-term and very little time, but still takes mental energy.) The thing is, I didn’t remove any of my old activities. Sure, I am no longer driving to doctors or doing any in-person socializing. I am not dating or going to family dinners. But while those things took up time, they also gave my life balance. Now I am lacking that balance. I am all work and little play, and that’s not sustainable.

I knew this before. I’ve been aware of it for at least a month or two, but I wasn’t sure what to do about it. I didn’t want to give anything up, so I kept going. I was managing ok, after all, so that meant I could continue, right? Obviously not. Because typically after this kind of fatigue, I take a few days to rest and then jump right back into things. I never feel this kind of mental and emotional resistance. Things couldn’t be more clear: it’s time to reprioritize. I am not sure what that will look like, but I know it needs to happen.

This is not the first time this has happened, and I’m sure it won’t be the last. I know this is something that many of us struggle with. So as I take some time to figure out how to better balance my life, I hope that you will do the same. It’s so much better to reprioritize before we get burned out, after all. But since it’s too late for that this time, I’m going to listen to my body and do it now.


Being disabled does not make me immoral

October 23, 2020

“Who came up with this system of the haves and the have-nots anyway?”
“That would be the haves.”

I can’t remember where I heard that, but it feels appropriate right now. That’s because I am frustrated not only by my lack of income, but especially by the scrutiny my measly income receives.

A few weeks ago, the New York Times broke a story that revealed Trump paid almost no taxes. Despite his huge amounts of money, he found ways around his obligations. Maybe the IRS took a close look at his taxes and determined it was all legitimate. Maybe not. Either way, he got away with it. And he’s far from the only one.

Meanwhile, I am receiving Social Security, housing, food, health insurance, and other benefits which allow me to sort of almost just about but not quite cover all of my basic bills. Of course, they don’t allow for “extras” like a vacation, big car repairs, a new used car when mine eventually bites the dust, or medical treatments that aren’t covered by insurance, and even without those things the money isn’t enough. So of course the solution is to try and earn money. Yet I am under such scrutiny that this is nearly impossible. And even without earning money, just living life is far too complicated because of the scrutiny.

The benefits cliff is not a new topic. It’s counter-intuitive to helping people get off of benefits. There’s an all-or-none setup that doesn’t work because my health is not all-or-none. Some months I can do more, some months less. Why should I be punished for that? But I digress.

I am not talking about the absurd benefits cliff itself, but about the intrusiveness of the entire setup. It is invasive and insulting.

I no longer have any financial privacy. Multiple benefits offices have me fill out detailed and intrusive forms. They look not only at my taxes, but also at my bank statements, including PayPal and Venmo. They question every deposit. For some, I am required to provide proof of the purpose of each deposit. When I can not show a cancelled check because my bank no longer provides these on bank statements, I must then pay to get them from the bank. When a friend gives me money, the office expects a notarized statement as to its purpose.

Seriously? I’m supposed to ask friends and others to notarize a statement about why they paid me?!? And about about strangers who send me $50 via PayPal or Venmo for buying some random thing that I’m selling? This is completely unrealistic, not to mention embarrassing! How exactly am I supposed to ask for this?

Example: “Do you remember how seven months ago I paid for that gift for Susan? And you know how you reimbursed me for your half the next day by Venmo? Could you give me a notarized statement that you weren’t paying me for anything but were just reimbursing me? I’d rather not say why.”

Yeah, right.

Then there’s actually trying to earn money. The limits for what I can earn without losing my disability benefits are really low – lower than my actual benefits. But long before I hit that number, there’s another number that’s scary: the one that triggers greater scrutiny from the government. Technically, reaching that number every month shouldn’t be a problem. After all, I wouldn’t be earning enough to get kicked off benefits. Still, we all know that the last thing we want is more attention here, especially these days, so I want to avoid getting anywhere near that number. Why give prying eyes more reason to examine me?

I am hugely resentful. Why can’t I simply try to earn as much as possible? Chances are I wouldn’t earn enough to get kicked off benefits (every time I have tried to work in recent years, I got a lot sicker and had to give up) but I would sure like to try and earn enough to buy some new clothes! And why can’t I simply live like a normal person who lays out the money for a shared birthday gift?

I get that the government wants to avoid fraud. They don’t want me getting benefits while also receiving $5000 per month from various friends and not reporting it on my taxes. But really, what are the odds of anything like that happening? Are there really going to be so many people on benefits who find a way to get enough money that doesn’t have to be reported on their taxes that it justifies this level of scrutiny? Would it really justify the salaries of the people paid for this scrutiny? Meanwhile, they make me explain that the $50 deposit into my checking account was a Chanukah gift from my aunt and no, I don’t wan to ask her for a notarized letter confirming that.

Now, let’s say someone was being deceptive. They received benefits they shouldn’t receive. The average SSDI payment for adults in 2020 is $1258 and the average SSI payments are $783 for an individual and $1175 for a couple. Meanwhile, we watch rich people and companies avoid paying millions of dollars in taxes. One rich person’s yearly taxes, if properly paid, would probably cover the lifetime disability benefits of quite a few people.

A lot of people find it unfair that they pay more in taxes than rich people do. I feel the same. But at the moment I am pissed that they get away with it while I need to justify every penny. Where is the scrutiny? I find it hard to believe the government couldn’t catch these folks if given the resources. Wouldn’t it make more sense to devote the salaries of staff to catch someone who owes millions, instead of focusing on disabled folks, the majority of whom are just trying their best to cover their bills?

A lot of people argue that the big difference is that disabled folks are living off of government benefits, so the government has to be sure that money isn’t being misspent. Uh huh. Tell me, do rich people not use government services? I’m pretty sure they use government infrastructure, their businesses benefit from people who attended public education, many of their businesses thrive because they pay such low wages that employees must use food stamps, and so much more. Many of them attended public school and some were even on food stamps themselves in the past. They benefit, even if their line is more squiggly than my direct one.

I am not suggesting that benefits should be handed out without any follow-up but maybe, just maybe, our current system goes absurdly overboard. I think we need a system where I can be reimbursed for laying out money for a birthday gift without having to jump through hoops.


Foiled by my supposed medication

September 23, 2020

For a short time, I thought I had finally fixed my sleep problems. And I had. Until it all went to hell.

My entire life I have been wide awake at night. It didn’t matter how tired I was, I would suddenly be awake. Mornings were horrible. I remember my mother’s struggles to get me out of bed from a young age. There were years of snoozing the alarm, and the ensuing difficulty getting to school or work. I never understood how people manage to do anything before work in the mornings. Go to the gym? Wash dishes? Clean? Read? It was all I could do to get on clothes, eat something, and get out the door.

When I developed sleep apnea, I began seeing a sleep specialist. In addition to treating the sleep apnea, he figured out that this problem of mine was due to a circadian rhythm shift. There’s nothing wrong with this as far as the body is concerned. It is only a problem because we live in a 9-5 world. What to do about it? He had me use a blue sunlamp for a short time in the mornings. That definitely helped me to feel more alert in the mornings. (And as a bonus, I am now much less bitchy when my seasonal affective disorder kicks in every fall and winter.) Still, I was sleep-deprived because I wasn’t going to bed at a reasonable hour. I wanted to, but I was too awake.

This worked so well. I wish they still made it!

Then the doctor introduced melatonin. Most stores sold 3mg tablets or more. He had me start much smaller. He recommended a site that sold 0.3 mg tablets. I took that it knocked me out, but I had a hangover effect in the morning. I cut it in half. That was better, but I was still tired in the morning. I cut it into quarters. Ah, much better. It took a lot of trial and error, but finally I found the right dose and the right timing. If I was out then I had to skip it (which always led to too little sleep) but most nights I was home, and I took my 75mcg melatonin every night. It wasn’t perfect, but it helped a lot.

Then I started taking hydrocortisone for my adrenal fatigue. I had also recently figured out that a few of my supplements were making me sick from corn derivatives in their ingredients. Fixing these things, combined with my new sleep routine, felt nothing short of miraculous. For the first time in my life, I was sleeping! I went to sleep at a decent hour, slept with my ASV (a form of CPAP machine) and woke up feeling rested. It was a miracle! Yes, I still had chronic fatigue, yes, I still had pain and all sorts of other symptoms, but at least I didn’t wake up feeling more tired than when I went to bed. And in general, my health was much better. It was amazing!

Sadly, that only lasted a few months. I noticed I was running low on my melatonin so I went online to reorder it, and found that the company had gone out of business! I was so disappointed. This had been working so well! My doctor didn’t have any suggestions, so I went online. Finally, I found a liquid melatonin that was gluten-free and corn-free. The dose was too high, but I hoped that a single drop, instead of a dropper-full, would be ok.

I took one drop and it was too much. I diluted it with water, making a 1:1 ratio. Nope, still a hangover in the morning. So I did a 2:1. I felt better in the morning, but still hungover. Meanwhile, it wasn’t doing such a great job of making me sleepy at night. Huh. That wasn’t right.

I struggled for 7 loooooong months. I tried different amounts. I tried different times. I thought maybe something about my body had changed. Or maybe it was the stress of the pandemic (even though I started it before the pandemic and had troubles even then.) I still had a few of the old pills. I had saved them, thinking it would be easier to take them with me on trips instead of the liquid (this was just before the pandemic, when still I expected to do some travel.) I took those 1/4 tablets for a few days and felt so much better. I went to sleep earlier, woke up feeling alert, and had more energy all day long. I took the liquid again and stayed up too late, woke up sleepy, and had less energy all day. What the…..?

This should be labeled as slow-release! This hurt me so much and I didn’t know why until yesterday.

It made no sense. They’re both melatonin, right? Finally, last week, I had an epiphany: what if this is a slow-release? The assumption for all medications (or so I thought) is that they are immediate-release unless they say otherwise. In fact, many melatonin products are specifically labeled as being slow release. I looked up the old melatonin and yes, it was immediate-release. I checked the new one and it didn’t say anything on the label. Yesterday I called the company and got my answer: it is slow-release. Holy crap!

This means that for 7 months, I have been struggling, feeling worse, because my supposed medication is slow-release and wasn’t labeled as such. I was pissed! I still am, but I’ve calmed down a bit. Sort of. Ok, not really. This is inexcusable!

Now the search begins again. Yesterday I started a spreadsheet. I am scouring the web, checking all forms of melatonin. No one else makes anything less than 1mg, so I need to get a liquid form that I can dilute. It has to be gluten-free and corn-free. It has to be immediate release. I will pay anything, but I must find this unicorn of melatonin products. Because damn it, I want my sleep, my alertness, my energy back!

If you happen to know of a gluten-free, corn-free, low dose, immediate release version of melatonin, please let me know and I will be forever grateful.

Meanwhile, if anyone needs me, I’ll be at my computer, spending hours researching a product that I should have had last winter, if only the one I bought had been properly labeled.


Staying busy while stuck in isolation

September 14, 2020

One thing about life with disabling chronic illnesses is that I was better prepared than most for life at home. After all, so often I am stuck at home due to my health, or I need to do stay home in order to rest up so that I can go out later on. A lot of my hobbies and interests are sedentary ones, thanks to my health, so the transition was easy in that regard. The social part is difficult, of course, but staying busy is easy. In fact, I don’t even have time to get everything done!

Meanwhile, most people I know who weren’t working full time from home and didn’t have young children at home were at a loss as to how to stay busy. As things opened up, many of them found adventures outdoors. I am still staying home, though. I would not go anyplace indoors or around other people. I do not feel that is safe in my area. As for outdoor adventures, I have no one to go on an adventure with. I live alone, and there is no one I am comfortable being in contact with right now, unfortunately. A picnic alone might be safe, but it’s lonely. A walk in the woods where people are around isn’t safe, and walking with no one around at all doesn’t feel smart. I would love to see the ocean, but I can’t drive that far right now, and I can not get into a car with someone else. So I am spending a lot of time at home.

People keep asking me how I am managing to stay busy. Here are a few of the things I have been doing. Please share yours in the comments, to help anyone who’s bored to get some new ideas.

  • House stuff. Cooking, cleaning, laundry, and all of that less-than-exciting stuff still has to be done, even during a pandemic.
  • Physical therapy. I am doing more than ever because my body is not doing well with all of this sitting in my apartment. It’s not like I was super active before, but even walking around a grocery store is exercise that I’m no longer getting.
  • Medical appointments. My body doesn’t stop having problems just because there’s a virus ravaging the world. I am having almost all of my appointments virtually, which has saved me a lot of energy and time, but I am still having them.
  • New hobbies. At the start of the pandemic, I figured I better start something new to make up a bit for all I was losing. I had wanted to try the ukelele for years, so I bought one. I have already learned a bunch of songs through free YouTube tutorials. I practice most days and it’s a lot of fun.
  • Old hobbies. For many years I have loved to read, crochet, and knit. Those are perfect pandemic hobbies. I did them daily before, and I continue to do them daily. I watch tv in the evenings, too. Before I watched tv any evening that I didn’t go out. Now, I watch tv every evening that I don’t have a Zoom call. *sigh* Oh, and this blog counts, too. Hobbies aren’t only things that are done daily, and writing here every few weeks is a great activity.
  • Volunteering. I did some volunteering before and I still do it. Because of my disabilities, I only volunteered for work that could be done primarily from home. That made the transition easy. I have taken on extra tasks, too.
  • Errands. Yup, those things still need to happen. I find shopping for groceries online to take a lot longer than going in person used to take. Dropping off paperwork at an office can still be done, even if I don’t go inside. Shopping for things online that I would typically get in person is a chore that takes ages, but it still needs to happen.
  • Social media. Some days social media is a drain that wastes my time, but many days it adds value to my life. I manage several Facebook groups and pages in addition to having my own personal feed. It’s a great way to keep up with family and friends.
  • Email, texts, and video chats. I often joke that I have a better social life now than I did before, but it’s sort of true. Meeting online isn’t the same as meeting in person, but it’s a hell of a lot easier. Since it takes so much less energy, and I don’t have the physical pain that comes with driving, I am able to have multiple social video chats in one day! I certainly couldn’t meet up with that many people in person in a single day. Plus, many people I am talking to aren’t local, and we are now realizing that we should have been doing these video chats for years. Hopefully we’ll keep them up. Email and texts take ages to answer. I’m glad for the opportunity to keep up with folks, but I do miss the ease and speed of phone calls.
  • Cleaning out…. things. Between cleaning out all of my way-too-many-what-was-I-thinking? email accounts and cleaning out physical stuff, there’s plenty to do. I’m enjoying the rewards of empty inboxes (yay for inbox zero! Even if it only lasts an hour….) and more space in my apartment.
  • YouTube videos. I have been watching lots of YouTube videos. There are opportunities to see things that wouldn’t typically be available, in addition to all of the previous kinds of content. I have been enjoying interviews with Broadway actors who were/are in isolation, cute dog videos (oh, how I miss dogs!), crochet tutorials, and so much more. I particularly like this channel for things that are disability-related.

All of that, plus random other things that I’m sure I’ve forgotten, are keeping me plenty busy. A few other things you could try would be taking online courses at a local college or through sites like Udemy.com or Lynda.com (hint: many libraries offer free memberships). You could also learn crafts online with YouTube videos or by taking classes, which are offered in many places. Try reading new books, listening to audiobooks, or trying new podcasts. Watch movies you’d always wanted to watch. Learn a language. Research your family genealogy. Redecorate your home in small, manageable ways.

I have noticed that many people are worried about taking up a new hobby or project, thinking they won’t have time to keep it up when things return to “normal.” Why start something that they will just have to give up later? But I don’t think that’s the right attitude. Instead, why not start something you can enjoy while you’re in this difficult state? Then later one, when life returns to “normal” or some other state, you can decide what to keep. You may just find that you enjoy your new hobby more than something you did before, and you will let go of the former. Or you might rotate them. There are no set rules here; you get to make it up as you go along!

So that’s what’s been keeping me busy, along with a few extra ideas for you. Please share your ideas in the comment! After all, these ideas will be useful for anyone who is in isolation during the pandemic, as well as anyone who is stuck at home due to disability and/or illness in the future.


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