Burnout, Executive Dysfunction, and Indulgence

I typically post my blogs at a different day and time than when I wrote them so I’m going to start marking the actual day and time. It’s 16:42 on September 19th, and I can’t decide what to do with my Saturday afternoon.

My planner works really well during the week because my schedule is consistent due to work. Sometimes on the weekends it’s not as great if I’m feeling rundown. Today it’s definitely been more like the latter.

I’ve been laying here thinking “I know I’m tired and it’s good to sleep, but I also need to [insert my entire todo list].” It’s difficult to get up and just do something.

I think I’m giving myself a pass this weekend because I’m feeling a bit burned out from 2020 but that doesn’t mean I get to skip my responsibilities and my actual self care. Indulgence is sleeping longer than you need because getting up sounds hard. I don’t want to be indulgent, so I think I’m going to start with something small and get my momentum going.

My hope is that this will get me moving to do other activities. Sometimes the resources we use for mental and physical health and products stop working, or need a jump start. When that happens I try to do an activity I enjoy that gets me moving, or turn on music I like while I work. Occasionally the making a list and just tackling one thing on it and deciding whether to rest afterwards or not is helpful.

Today, I think I’ll make tomorrow’s schedule so I start the day off right, and I’ll pick one cleaning chore, and one mindful activity (so not videogames) to do to relax.

This year is tough on everyone. What do you do to get yourself motivated, or started on a more healthy track or to do list?

A Planner, Stickers, and Breaking The Cycle of Stress

I wasn’t planning on writing this now at 22:30, but my brain will not let me just rest for an entire afternoon. I went to sleep at 18:30 and the plan is to sleep again after this. I’ve been exhausted lately and tonight my goal was to give myself some much needed rest.

The more I learn about myself the more I realize that I am not only a perfectionist, but I’m a workaholic in the sense that I have to feel productive 100% of the time. That’s problematic because I also have a heart condition that makes being productive 100% of the time extra exhausting. I’m talking weak arms and legs, pass out in the hall because you’ve been studying non-stop for a week, exhausted (yes, that’s happened before).

Lately I’ve taken some steps to make self-care and rest more intuitive, but I have a feeling this will take a while. Here’s what I’ve done:

First, I love using my phone for to-do lists. It makes sense to me to keep my priorities in the thing I carry around anyway. Which is why I started a planner in a non-virtual notebook. Sounds contradictory, I know.

Using a paper planner means I can place it where it’s going to “haunt” me. On my bedside, by my workstation, in the car, in front of the TV, everywhere I look is a good place for it.

It’s working.

I’ve used the planner every day and it’s helping me remember everything I need to do as well as move my priorities around as needed.

Next, this planner is not designed to make me follow the schedule, it’s designed to help me break it when needed and still feel okay about it.

I had this pack of stickers that I think are adorable but never used because when the heck, as an adult, are you going to use stickers??? At least I never had a use for them before. Now I do, because every day that is a “good day” from a productivity standpoint gets a sticker in the planner.

This is inherently rewarding for my crow-brain (crows collect things they find asthetically pleasing) which enjoys giving me cute stickers, and serves as a visual tracking of my general productivity/positivity trends.

From a Spoonie perspective, tracking your health is pretty much standard. This is part of my mental health and I want to see if it fluctuates in any patterns. If it does, is there a reason, and is there a way I can use that information to help myself be healthier? When you have a physical illness, your mental health becomes even more vital to your energy levels. For cardiology patients, this is something you learn right away. Stress or lack thereof could be the difference between having the energy to make it through lunch, or needing to lie down so you don’t pass out.

The stickers give me solid reminders of the days when I was either healthy enough to be productive, or healthy enough to forgive myself and view the day positively when I wasn’t. A sticker means: great work, you had a good day either by knocking out your to-do list, or by taking time to relax. This way, both are encouraged and wavering in a state of anxiety between the two isn’t.

I also included a list of daily goals in the planner. At the end of each day I list which goals I completed and which I didn’t. The idea is to give myself a sticker anyway. This ensures I don’t beat myself up because I didn’t complete a goal, but I’m also motivated to see the not-done list get smaller each day. Plus, it’s a good way to build a habit one task at a time.

Overall I think it’s working because I never would have felt comfortable going to bed at 6:30 PM, at least not with the only productive thing completed after work being a single blog post. I feel a little less stressed but it’s going to take a long time before I see permanent changes to my mentality.

I’m excited to see how things turn out!

Stress, Reviews, and Trying New Things

I don’t want to talk too much about how my life was this past week. Sometimes I just want my privacy, and this week had too much in it that was very private and personal. I was stressed out and sad and I did not know how to cope some days except to just do my own thing. This involved enjoying a lot of my hobbies: knitting, reading, video games, coloring, writing, and playing music (and of course, sleeping).

I watched a lot of movies, and listened to podcasts, and audio-books. If you’re interested in audio-books, “The Chronicles of Saint Mary’s” are excellent. Well narrated, and well written, funny, and interesting. Podcasts that are good are “Terrible, Thanks for Asking”, and “Things You Should Know”. I’m a huge fan of the thriller and horror movie genres, especially supernatural ones.

I watched Stonehearst Asylum, which, in my opinion is phenomenal. It brings the idea of what exactly qualifies as mental illness, and the proper treatment of it, as well as just has an interesting and thrilling story. In the very early days of organized treatment of mental illness, asylums were where everyone was thrown. There were a lot of misconceptions and cruelty was often mistaken for treatment. Stonehearst Asylum was a good display of history (though I wouldn’t count on it being entirely accurate) as well as mystery, action, and a fantastic plot twist.

Lavender was another movie I watched. It’s not for everyone, as it can be frustrating trying to piece everything together. Not to mention it can be a bit upsetting for anyone with some….painful parts of their past or childhood. Without giving it away, proceed with caution before you watch this movie. If you’ve had trauma as a child, or are triggered by violence or any kind of assault/violation of space or comfort, this is most likely not the movie for you.

I also spent my time trying my hand at learning the guitar again. I enjoy teaching myself new things using books and YouTube. I played a song I’ve been trying to figure out, and I think I did alright. You can check it out on my channel (with a clip of the original linked in the description) Lock, Stock, and Spoonies (the YouTube version here). I’m still trying to get it perfect but I’ll have to figure out more guitar skills first.

If you can’t tell, I’m suffering from some writers block. I want to be a supportive voice for people who often don’t get enough support from society, the medical system, the financial system, and sometimes their own friends and families. But I also want to put my own creativity, personality, and art, out into the world, and some days that’s hard. Partly because that’s hard in general, putting a piece of yourself out for people to judge. Partly because some days I struggle with exhaustion, or depression, or just being damn stressed out so much so that I can’t remember an entire month of my life, or an entire human being who was a good friend to me in high school (Seriously. I couldn’t remember her and it was both embarrassing and painful to realize I’d forgotten huge chunks of my life due to mental illness), and those things make being creative, AND brave enough to post that creativity, difficult. I hope that I have more days that are better and that make me feel confident and strong, but lately I’ve had days that made me feel not so great.

That’s the kind of days everyone has, and being a Spoonie, they’re more common. I’m exhausted and struggling to make sure I take care of myself, and remember important events. My social life has been put on hold for a bit, and that’s okay. Sometimes my health, and healing have to come first. But let’s hope that soon, I’ll be able to put out more easy to read or watch content.

Anxiety, Heat, and Choosing What Works

The heat is not my friend.

My illness causes my blood pressure and heart rate to be slow to respond to environmental changes. If I don’t drink enough water or it gets too hot my heart could race or I could pass out. The longer term consequence is exhaustion.

Lately I’ve been feeling like there’s never enough time, never enough energy, never enough resources for me to pull from. Chronic illness is a constant fight with your own body.

My body has been sore, my heart acting up, and my fatigue through the roof. It’s been worse because my stress levels have been higher due to finances and I sacrifice meals some days in order to save money (I don’t recommend this incredibly unhealthy option). This has made me feel tired and stressed even if it’s summer and I have fewer urgent things to take care of.

The good news is, it pushes me to get stronger physically and mentally. The world is getting warmer and my body is going to need to have the endurance for extreme heat and extreme cold.

Some days, I have to remind myself that rest is important. That it’s okay to put off a new endeavor or give a friend a raincheck. I’ve said that before. But, how do I handle the constant feeling of running out of time to do those things? Of feeling a little bit frantic even when I’m relaxing?

For me, this is probably part of the generalized anxiety I’ve gotten after years of college, of semesters rushing to get everything done while also dealing with illness in some form, handling social situations and pressures, and lately two jobs which are relatively fast paced and time dependant.

I can use my resources to a point, but there comes a time when no amount of breathing, meditation, calming activities, and yoga will ease that anxiety. Sometimes my doctor is the person to head to because my brain chemistry is out of wack and if I get too much anxiety it affects my heart in ways that would just cause more anxiety. This option isn’t for everyone, especially if finances aren’t so dire that you’re having to sacrifice good nutrition for money (once I eat what’s been stockpiled in my kitchen I’ll be able to eat healthier).

However, if you’re someone who doesn’t mind taking a medication that works for you, it’s a great option for mental health management. Just because the culture is shifting away from pharmaceuticals doesn’t mean you can’t give them a try. I plan on asking my doctor about a specific medication which I can take as needed (which means I don’t HAVE to take it all the time) and isn’t addictive and doesn’t have an OD risk. It’s light and just a “supplement” to my usual resources when they don’t work the way I need.

That being said, I don’t plan on taking meds for the rest of my life. I’m a strong supporter of tackling the real problem, not the symptoms. This means keeping my stress lower, working on getting a healthier diet, getting enough sleep, and continuing to build my resource arsenal against my condition’s symptoms being disruptive to my life. This also might mean giving up things I want.

My future plans are uncertain, but that’s okay. I’ve given up on my grad school goals, and am focusing on just going to work and living my life. School has been unhealthy for me amd while I’m pushing through undergrad it would be detrimental to my health to move onto grad school. This actually lowers my anxiety a bit because I know I can relax a little when it comes to my grades. If I’m doing my best and passing, I’ll consider that a win.

How many people will look at my situation and think “You’re just giving up. How can you walk away from a good opportunity like that?” and it’s because I want my doors open for other opportunities that I’d prefer and that I can handle: an Etsy business I’d like to start, spending time with family and friends, possibly starting my own family, and just time to relax and enjoy life.

There are a lot of ways to live life, but if you’re living it in a way that’s making you sicker, or stressed, then in my opinion what’s the point of doing those things? Sometimes there’s no choice, which is a hard reality, but when there IS a choice, it’s never a bad thing, doing what works for you. When the world gets too hot, it’s nice to be able to sit back and breathe, and I’ll always work to make sure I get the time to do that, even if some days I feel like I’m always rushing.

Time, Energy, and Changing Plans

Sometimes I forget that I have chronic illnesses. I’m incredibly lucky to be able to say that, but it can become a problem.

When I’ve put in the work, and planning, and gotten a good day (or few days if I’m lucky) with no health problems…. eating what I want without enzymes, doing what I want and not feeling tired, no dizziness or extreme fatigue, no stomach pains, no muscle or joint pain, no episodes of extreme hypersensitivity…. I forget. Being sick is my normal, so when it doesn’t happen my brain gets excited and forgets so that I can plan all of the wonderful things I want to do.

So I call/text friends and family and make plans. I offer to work extra days at my job; which is a highly physical job and fast paced so it takes a lot out of me while also keeping me healthy. I basically over-book myself. That’s what happened this past week.

Getting my YouTube channel started, making plans with friends, cleaning the apartment completely, all while it was a difficult week at work because the steam in the building was shut down and I work running a giant industrial washer sanitizing supplies like carts etc… proved to be too much.

The steam shut down took all of my extra spoons because I was working in freezing conditions and constantly covered in water or at least had soaked socks and shoes. Along with that, I misjudged the time needed to do some things and lost sleep.

Postponing and then, for another reason, having to reschedule plans with a friend was one consequence. I got lucky and another friend postponed plans which gave me time to rest. Even so, by the time I got to Saturday, a day to visit museums in Cleveland with my dad, I was feeling the week. It was a great day, I saw a lot, but not as much as I wanted. I had to head home early because my body was just done.

Luckily I have an understanding father who didn’t mind making plans to come back another time.

Something a lot of people respond to Spoonies postponing, canceling, or cutting short plans with is anger, or disappointment, or even questioning whether we really want to be there. It’s frustrating and can really make a person want to never make plans with anyone again just to avoid it.

The solution I’ve come up with is to just not give a damn. If I have to do something for my health, and I’ve been honest and upfront with my friend, family member, or boss about my inability to be there, then I have done what I can. There’s no sense in beating myself up when I’ve done nothing wrong.

As Spoonies it’s our job to advocate for ourselves because many times no one else will. It’s difficult, of course, because advocating takes energy. Sometimes the spoons to explain in detail that you don’t dislike a person, you’re just genuinely exhausted, just aren’t there. But here’s the cool thing: it’s a great way to find out who’s worth having in your life and who isn’t.

If someone doesn’t understand your needs, or isn’t compassionate towards you, then maybe they’re not someone who needs to be in your life. If you can’t cut them out for whatever reason then remember that you haven’t done anything wrong. Don’t apologize for doing what you need to be healthy. Apologize for any inconvenience, apologize for changing their plans or schedule, but don’t apologize or feel bad for making healthy choices.

We cannot expect, in a world full of people with no health problems, especially in a country that has a culture of “fix the symptom, take pills, postpone the bad feelings” instead of promoting true overall heath with lifestyle changes, that everyone is going to understand that you’re not jerking them around. That you genuinely need time off to sleep, even if it feels like all you do is sleep or sit.

No one can tell you what you need. You’re the only one living in your body and the only one who’s stuck with it for your whole life. You’re the only one who gets to make decisions about it.

Side note: If you are in a situation where you feel like someone has taken away your choices about your own body, please seek help. Hospitals are equipped with staff who are trained to handle that kind of thing. When they ask if you feel safe in the home or even if they don’t ask, in America it is a patient’s right to request a private meeting, without a family member present and that is a good time to say something. Police also can help and have access to other longterm resources.

Camels, Dolphins, and Exhaustion

It’s taken me a while to write a new post, but I had a lot going on as well as some problems with my illnesses. Here’s the update:

I missed a week of school, before the official week of spring break, to go to Los Cabos San Lucas for spring break. I went to a resort with my family and just spent the time relaxing. This trip was significant because it was a vacation I’d been waiting to go on since 2015, when I got too sick to go and had to let my parents go without me.

I was pretty nervous about going, first for the plane ride, and second for being out of the country. The plane trip made me nervous because I would be confined to a small space and if my symptoms flared there would be no way to help me until we landed. The next concern was that I would have a serious problem while in Mexico, which wouldn’t be too bad given we’d have the funds for adequate medical care…. except…. my condition isn’t directly known. It doesn’t have a true diagnosis and lands in the grey area of cardiovascular no-man’s-land. This makes it difficult to treat without a language barrier, let alone when I have no official term to describe what’s wrong with me.

Well, I put my worries away and went on the trip. It was amazing! I rode a camel, which we were shown are given free, non-fenced, room to roam, and learned about survival methods in the desert. I was shocked I was able to stand the heat, and found out there’s something to be said for clothing designed for a sunny climate. My dad let me borrow a big, UV reflective button down that kept me from overheating or getting sun poisoning. I learned about desert plants and ate a wonderful meal, where our guide Augusto taught us all about making tortillas the traditional way and gave us four kinds of tequila to try (I was having some health problems so drinking wasn’t as feasible for me).

I also got to ride, dance with, and kiss a dolphin, which was an incredible experience not available in the US. Those are memories I’ll never forget.

The trip did have some downsides: I was feeling ill and exhausted for a good portion if it. My stomach and heart giving me problems. I had to worry about things that most vacationers don’t have to think about quite so intensely: am I drinking enough water? Did I reapply sunblock on time? Do I have the energy to be out or should I go to bed? Is this food going to cause my conditions to flare? Is my exhaustion from traveling, or did I get a virus or is something else wrong? All of these concerns had a basis in whether I was going to push my heart or GI system to the edge and need medical care, or at the very least ruin a nice vacation moment for my family by needing to cut it short.

Luckily, I made it back to the states with only some mild discomfort and went back to work (sort of…). I have been experiencing a level of exhaustion I haven’t experienced in quite some time. My school work is stressful and to add to it I’m so exhausted I usually sleep instead of completing it. Or, I wake up and have housework to finish which makes me too tired to study. Needless to say, chronic illness is a vicious cycle. As any Spoonie will tell you, borrowing spoons is tricky work. My spoon borrowing is beyond out of control and it’s going to take a lot of work to get it in check.

Vacations for Spoonies are sometimes more tiring and stressful than relaxing. But I don’t regret my experience and am really glad I was able to go. In my life lately I’ve been trying to push myself more, which, I’ll admit has the effect of making my stress a lot higher and may not be the wisest decision. Life isn’t always easy to figure out. What seems to make perfect sense to one person is incredibly opaque to another. When you add emotions, surprises, and the responses and actions of others, life becomes a seriously frustrating puzzle and borrowing spoons to handle it is even more frustrating.

My puzzle right now is a very tiring one, and I may take longer to post updates. I’ll be doing my best though, and I hope you all enjoy reading about my sometimes wild, sometimes boring and repetitive life.