Lately, part of my communication with the chronic illness community has covered some territory that the broader, more healthy, community doesn’t normally consider. For example, if one woman in a particular group I am a part of said she had multiple physical ailments that limited her ability to move and function, most healthy individuals might think about all the ways that would be physically limiting for her.

You might cite her inability to go out, or get herself out of bed, or bathe, eat, go to work etc. You might imagine she has nurses/aides, special medical equipment, and various medications. You might think about the ways jobs or other groups would need to help accommodate her so that she could participate. After all of that, many people unfamiliar with the Spoonies community might think they’d covered all the struggles of having physical illness that requires assistance.

So, you might be surprised to find out that the people meant to help her have harmed her. This woman told us a story about her medical aides who had stolen from her, physically harmed her, and mentally abused her for months before someone in a position to do something about it was alerted to the problem. That meant months of trauma she had to endure. While trauma is a worthy topic, I’d prefer to talk about forgiveness.

First, the definition of forgiveness is as follows based on The Merriam-Webster’s Dictionary:

1 : to cease to feel resentment against (an offender)

When people talk about forgiveness, many times it’s said from a perspective of victim blame (even if they don’t mean to): “How can you move on if you don’t forgive?” Then there’s the phrase an acquaintance of mine got recently: ” If you don’t forgive them, how can others forgive you for your mistakes?” These are both pretty problematic; the first needs to be framed in a non-harmful way, and the second is just harmful.

“How can you move on if you don’t forgive?”

  1. For some, forgiveness means going back and trusting their attacker/abuser. This can feel like a phrase that invalidates the pain that person inflicted.
  2. When dealing with PTSD most people have a hard time even thinking about their attacker, let alone focusing on the event long enough to let go of their animosity for that person.
  3. Sometimes animosity can be a good thing. Too much can be toxic, but a lot of people use their negative feelings towards an attacker/abuser to push themselves to be healthier, go after opportunities, be themselves, or move on in their lives without having to let go of the feeling that their trauma was horrible.

To frame it differently, I think most people’s intention with this one is to say “you can’t be free from it until you stop letting it bog you down”. Most people don’t literally mean “forgive and forget” (some do); but unfortunately, how the word forgiveness is evaluated is usually based on what you learn as a kid. “Give them a hug, shake hands, and be friends again.”

It’s also extremely difficult without active treatment, or similarly based resources, to mitigate the body’s response to trauma triggers. Your Amygdala is the brain part responsible for fear and conditioning, and when it comes to trauma it’s pretty stubborn. This is humanity’s greatest survival method, but it can also be a hindrance. Asking someone with PTSD or C-PTSD to stop having the reaction or feeling they do about a certain person is like asking someone with motion sickness to stop vomiting after riding the tea-cup ride at Disney World; it’s an automatic response their brain and body have.

“If you don’t forgive them, how can others forgive your mistakes?”

I generally try to reserve severe judgement on this blog; my goal is to provide a place for everyone to gain insight into their own lives or learn something new, or just be distracted for a while. However, for this phrase I’ve got pretty strong feelings. Here they are:

This is toxic as heck. It’s hurtful, it’s gaslighting, and it’s victim blaming/shaming. There is nothing good about this phrase. It isn’t helpful and it actually teaches people to accept abusive situations.

I’ll break all of that down :

  1. It’s gaslighting.
    • To learn about gaslighting in all its forms, checkout this article.
    • This form of gaslighting is a more subtle version of trivializing:

Trivializing: This occurs when a person belittles or disregards the other person’s feelings. They may accuse them of being too sensitive or of overreacting when they have valid concerns and feelings.

What is gaslighting? Examples and how to respond. (2020). Retrieved February 04, 2021, from

This is trivializing because it implies that the victim is simply being too sensitive about the situation. That it should be simple to let an action, like the one their attacker/abuser took, go, and simply forgive them for the pain they caused. It implies that their own actions, even if they never caused severe physical or mental harm to someone, are equal to that of a physical or mental abuser.

2. It’s victim blaming/shaming.

There’s a common cycle in abusive relationships where the abuser harms the victim, apologizes, the victim forgives/forgets believing the abuser won’t do it again, and then things go back to normal and the abuser fails to address their issues. They don’t go to therapy. They don’t stop harming the victim. They don’t change. But time and time again the victim will forgive them and remain in the relationship because of this “forgiveness narrative”. Because someone told them that if they couldn’t forgive their abuser, then they also don’t deserve to be forgiven.

Now, this statement might make sense, if the two people have done the exact same thing to harm the other. The part where this gets convoluted is when the victim’s “negative actions”, are lacking in the severity of the abusers. They start to believe that if they can’t forgive their spouse/friend/sibling/parent of the physical or mental harm they’ve done to them, then that person won’t forgive them for the things they believe are just as bad. These things vary because they tend to revolve around what their abuser believes is incorrect or flawed; it could range from spilling some food on the floor, to simply smiling at the wrong time.

By telling someone that no one will forgive them if they don’t forgive others, or that “everyone deserves forgiveness”; you’re quite possibly framing abuse in an “it’s okay as long as they seem sorry” way even without meaning to.

3. It makes the victim feel like they were put through their own trauma because they just couldn’t be kind/forgiving enough, or because they’d hurt the other person in the past.

This goes along with point 2; if someone continues to be hurt out of spite or anger for some small thing they did, this narrative can make it seem like that’s only happening because they aren’t really letting go of the past. They can’t stop flinching when around their partner, so that makes their partner angry. They feel anxious when their partner is home so they can’t focus on the cooking and burn the food. I could go on and on, but the point is while this “forgiveness narrative” can be helpful for some if the thing they need to forgive is small or the other person is truly regretful and is taking steps to get help/make amends, but for abuse victims or survivors this narrative is harmful and toxic.

4. It teaches people to accept abusive situations.

Being told that maybe someone hasn’t forgiven you because you haven’t forgiven them is a harsh narrative for victims of abuse. It implies that the yelling or hitting they’ve dealt with is simply a cycle based on their lack of forgiveness. That if they can forgive their abuser for the harm they’ve caused, then their abuser will forgive the infraction caused by some minor inconvenience (such as burning dinner) and stop being abusive.

This thought process can cause someone to continuously forgive and stay in an abusive situation simply because the other person says they’re sorry, or because they blame the situation on the victim’s inability to complete tasks the way they want (more gaslighting). Fixing a situation and getting real forgiveness starts with the person who caused real harm going out and addressing the issues that made them harm in the first place. Therapy is usually a pretty good start, but just because you go to therapy and try your hardest doesn’t mean the other person has to forgive you.

No one owes you forgiveness. You don’t owe anyone else forgiveness. Forgiveness isn’t like consent, it doesn’t have to go both ways and it’s not required. Looking for someone to forgive you because you’re struggling with your own guilt over your own actions, is a personal issue, not an issue for the person you hurt. Forgiveness is a feeling, not a choice. You either feel like the situation is resolved and you can trust that person again, or you don’t. You can accept an apology and still not forgive someone for their actions. If you don’t feel less resentful of what that person has done to you, that’s not something that will change over night.

When you use these two statements, even if you have the best intentions, especially on a broad platform like a public Facebook page, blog, YouTube channel, or in a seminar you might teach in, you never know what your listeners have been through. Many Spoonies are Spoonies because they’ve gone through some kind of mental or physical trauma, or some have gone through those things as a result of being disabled. This community is filled with people who hear these phrases as invalidating and harmful.

Letting go of a situation is not the same as forgiveness. Getting out of a situation is not the same as forgiveness. Ceasing to allow an abuser to continue abusing you is not the same as forgiveness. Not pursuing revenge/retaliating against someone who harmed you is not the same as forgiveness. Always make amends properly by getting help and stopping hurtful cycles. Always allow yourself to take steps to become more free from a past trauma. Being healthy and happy after a trauma does not always mean you must forgive the person who traumatized you; and it does not mean you aren’t worthy of your own forgiveness when it does come to you.

Same Me, Same Goals, New Methods

Last Year I wrote about how each day is a great time to pursue self improvement. I still feel that way, and given the less than joyous political and social climate we had in the US this year, maybe even more so.

Every New Years Day for me is a day to assess what I’ve done, and come up with a plan for making it better. Most people can do this pretty effectively. The tricky part is continuing that self-help momentum into February and beyond. I struggle with it as much as the next person but I’ve learned some tips that might help someone else too.

The first week of the new year is when I write the page numbers, goal pages (daily & yearly/lifetime), and date sections for each day of the year, in a fresh notebook. This planner has become my lifeline to keeping on track (read about it here) and is part of three notebooks I use daily.

The second notebook I use is a journal for tracking what happened the day before. Most people who have gotten to know me over the years know I have a slightly bad long term memory and this helps me keep track of important dates such as when I graduated, had major medical procedures done, changed jobs/schools etc. It’s also a good mental health care routine to have to process stress and monitor health trends. For example, if a doctor wants to know how long my symptoms have lasted, or when I first noticed something, I can usually look back and find it there. I’d recommend this to anyone preparing for an appointment, especially since in the US right now the waiting times are much longer, and you’re more likely to go through health changes (or attempt to home treat) before your appointment actually comes around.

The third notebook is another kind of health tracker. Before last year I rarely drank soda, and I was so busy all day that the extra sugars didn’t affect me much. Since changing from a job where I was on my feet constantly to a completely sedentary one I’ve also drank more soda than ever. I gained some weight and started seeing some negative effects on my heart and overall health; this plus the fact that T2 Diabetes runs in both sides of my family encouraged me to lower my intake. Since I’m a believer in enjoying the little things in moderation, this journal lets me essentially do a sticker chart (yep, more stickers!). I made a spiral chart, and every 5 stickers I can have a soda, and after about 70 stickers I get a Redbull (I found out having one and drinking it slowly with water actually doesn’t bother my heart too badly; that’s serious progress!).

The goal, is to get a sticker after every good health day. I have to drink enough water to meet my intake goals, which is around 1500 mL, exercise in some way even if it’s just a brief walk, and get at least 6-8 hours of sleep. If I meet all three of these goals, I get a sticker. This method basically reinforces itself, and helped me move away from my slight soda addiction. Before this, I was literally putting myself into exhaustion from excess caffeine/sugar and not fueling my body enough to handle it; it caused quite a few heart problems.

Outside of these journals, making my goals for the year has been vital. When making my goals I try to keep in mind that I’ll probably lose momentum around mid-late January, and they should be realistic enough to take into account poor health days, stressful events, and disappointment when I fail to meet daily goals. Those goals are:

  1. Do my best to listen to my body’s needs
  2. Make healthy choices as much as possible
  3. Treat each new moment as just that, new.
  4. Try to work on at least one personal endeavor each day, even if that’s just for 10 minutes

These seem kind of simple, but they leave room for error, while giving me a chance to assess what I want out of my life each day. I personally enjoy learning new things, working on different projects, and getting healthier, but setting strict goals makes it harder to adapt when things don’t go as planned. As most Spoonies already know, having to adapt is crucial when your body doesn’t always do what you need it to when you need it to.

So, what do I do around this time of the new year when things start losing their brand new motivational sparkle? I set alarms.

Well, technically I use my phone and apps to track personal goals in simple ways. But since not everyone has the ability or means to do this, I’m going to break it down to it’s simplest form. I have an alarm for each type of activity I need to do during the day. One for taking my medications, one for small fitness breaks, one for drinking water, and one for time to rest and reflect on my day. Alarms can be different things for different people, but they give you a chance to stop stressing, and let the app/phone/clock worry about time. If I choose to skip one, I know it’ll come around again and I get another shot at it later.

Honestly, for me, the key to staying motivated is what I’ve stated from the start: every new day, every new moment, is a new chance. Beating myself up over what I didn’t do because I was busy with my health, another priority, or just plain tired, just stops me from trying again later. Being gentle with myself, while also trying not to overindulge have been the best ways to keep me going at a good pace. There’s no magic routine that will work for everyone. I didn’t learn these methods from someone else, and while they might help someone else, that person will also have to make changes that fit their own needs. Implementing something small, getting used to it, then adding resources as needed is a pretty good standard practice. Dumping too much on yourself can be overwhelming and most people lose momentum from the sheer weight of it all.

Self improvement isn’t a sprint, it’s an endurance run. Go too hard and too fast, and you’ll burn yourself out before you’ve even begun.

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!

Updates, a Garden, and Feeling Overwhelmed

I know I haven’t done much lately on any of my accounts. I’d like to change that.

Some updates: I’ve been working on getting us fully settled in to our new home, as well as working full time, and dealing with some personal things. We have a garden now which has been exciting and I wish I had documented it more. We have moss currently but on the sunnier half we’ll be switching to Red Creeping Thyme as soon as the seeds come in. It’s a risk planting so late in the year but I’m too excited to wait.

My plan going forward: I’d like to get back to writing once a week, but I am going to focus on my progress with some hobbies and goals. I’ll be switching back to my “finish one project at a time” method and hopefully that might facilitate some content.

Here’s hoping I don’t lose momentum!! Sometimes I just can’t find the spoons… and living in America is making life difficult lately. I won’t be commenting on our current political and medical climate because frankly it is a lot for me to process. I have strong opinions and feelings about safety and unfortunately that’s been making me feel more and more drained.

Until next time, I hope everyone is staying safe and doing their best!

Staying Mentally Grounded in Social Isolation

Part 1-My own experience with isolation, and how to stay sane:

When the government in my state announced the mandate that we should practice social isolation, my life didn’t really change much. I am fortunate enough to work for a company that values us as people, and has made working from home not only do-able, but enjoyable. This is, to date, the easiest social isolation I’ve done. And yes, I’ve done it before, more than once.

One thing that makes this different, and carries its own difficulty, is the uncertainty surrounding the situation as far as what the world will be like when it’s over. In the past, I knew the world would be the same when I re-entered it. Now? There isn’t so much certainty. If you’re struggling with that uncertainty, or the loss of normal daily life, it’s okay to grieve. I did every time and it was vital to my health.

The first time I was isolated was brief, and due to swine flu when that was the virus we were all worrying about. I was at home for two weeks, and the Stephen King mini-series marathons on TV were absolutely the only reason I didn’t sleep the entire time. I didn’t learn much this time, mostly because I was unconscious and resting for most of it. The thing I wish I’d done differently was text my friends more. I could’ve used the support and the social interaction.

The second time I was socially isolated, it was due to an extreme, but acute, bout of depression caused by the situation I was in during the fall of 2012. I will most likely write more about that in my next post, but for now: I lived alone, in a big city, with zero friends there or in my hometown, and I was expected to function completely alone.

First, I was fortunate to have all the creature comforts I could want and supportive parents. I had school to distract me, though I essentially stopped attending classes and disappeared from the world for an entire semester. I left my home once or twice a week to eat, and then enjoyed, to the best of my depressed abilities, Netflix, video games, phone apps, and an unholy amount of sleep the rest of the time.

This? Not healthy. That is NOT the way to go through social isolation and I really urge everyone to remain social and productive in some way. I nearly died, and I say that to press the point that it is not good for you. I wasn’t being forced into isolation, but I was isolated, and I handled that isolation in the worst way. It also seems to be the biggest temptation if you’ve lost your job or social connections during this time. No matter how alluring sitting on the couch watching TV seems, it’s not going to do you many favors.

The one good thing I did for myself then, which I do recommend, was that I took a lot of late night walks on the beautiful campus nearby. The fresh air, scenery, and exercise are probably some of the biggest reasons I wasn’t more sick (I left there with physical illness from ignoring my physical needs). It provided a needed respite from my self-imposed prison and restored my sense of peace and calm. If you can’t go for a walk, try to find images of nature or even a virtual tour of a park or facility you enjoy. You could even imagine your favorite outdoor place.

There was a little less “outdoor” for me during my third isolation but, it was also much less lonely, and healthier. My 2015 illness, which is explained in one of my much earlier posts, put me in bed. The summer heat kept me inside even after I was able to walk around.

I spent 7 months isolated with my family because I simply didn’t have the energy to entertain guests or have even a small conversation, for that matter. Believe it or not, I stayed mentally healthy the entire time. I was being physically tortured by my own body every minute of every day, and I was isolated with my parents, and I still managed to stay happy. Not everyone is so lucky and this was absolutely not completely due to my own actions. I am grateful for the people who helped me. None of us can do this isolation without some kind of support, even if it’s long distance.

How did I help myself when others couldn’t? I breathed. I was in a constant state of focusing on my breathing; a breath in for a four count, hold, and the slowest breath out for as long as I could manage it.  It’s a meditation technique but it’s also a calming technique medical professionals recommend for anxiety and to reduce all kinds of physical illnesses like hypertension. My entire day was me focusing like this, to stop the constant pain and nausea and to keep me sane. On its most basic level it satisfies the primal need for air and tells your anxious/stressed body “I am still breathing, I am still alive”.

If you’re feeling overwhelmed, this is a good way to get back to basics. If you are healthy and able, focusing on breath can be a wonderful way to ground yourself. Don’t stress about the “how”, just breathe in whatever way helps you. Try reading 10% Happier by Dan Harris for some excellent tips on different types of mediation and a great read in general.

What if you’re sick, and breathing is difficult? Or your panic attack is too overwhelming to breathe? I had days like that too, when my heart condition was bad and it felt like all the air was being pressed out of me. In those times, I would focus on a part of my body that didn’t hurt and think about what it felt like. It’s a mindfulness technique that takes your focus away from the negative stimuli and brings it to something benign and lacking any unusual stimulus. The bottom of my foot was my part of choice.

Part 2-Replacing anxiety with activities:

Aside from practicing mindfulness meditation, I picked up a lot of hobbies. Previously I had really only played video games, read, or watched movies. Now I was hungry for absolutely any activity to distract me. It worked.

Here are the things I did to entertain myself: I learned everything I could. I focused on self-improvement instead of entertainment and actually found I was more entertained that way.

YouTube is amazing. I learned to Knit, to sew more complex things, to embroider, and to solve a rubix cube the slow way. I practiced piano. I stretched and went for walks with my parents when it was safe for me. I read non-fiction books and fiction books. I played puzzle games. I did puzzles, almost constantly; we had a puzzle on the table daily.

I practiced drawing. I colored in adult coloring books. I took long baths with bath bombs and calming music. I learned anatomy (and then forgot most of it). I went on (which does have more than just language lessons) and and learned everything I could. I practiced mental math until it wasn’t difficult or scary anymore. 

I took in anything and everything. My mindset was “If I’m going to die, then I’ll die knowing I did a lot of things. If I’m not, then I’ll live with more skills/knowledge and maybe I can help someone else.” The fact that I wasn’t bored out of my mind helped too.

There is always something to do. Enjoy the view from your room. Learn something new. Count everything you see that is a particular color. Make something to donate or share like a fleece tie blanket or a heartwarming painting. Take time to appreciate your loved ones. Practice not caring what others think and being yourself, because we all need a refresher on that sometimes. Confront your fears. Share your fears with someone else. Give your pet attention. Give yourself attention.

Part 3- Gratitude

This has been the easiest isolation for me because I still get to talk to my coworkers. I still feel like I am offering something to the world (which isn’t a requirement, but it’s something I enjoy doing). I can eat, and exercise, and get out of bed. I can use my phone and have the energy to talk to loved ones.

I am fortunate. I know this. Some are not as much so. But if you’re reading this, and you find that you’re scared, or bored, or wishing you could get more social distance between you and the people you live with, maybe this will help.

Life is not always what we expect. Sometimes we have to do it differently, or alone, but we adapt and survive anyway. Every time I was isolated was different. The time that was the healthiest was when I focused on self improvement and my breath. My gratitude, and my entertainment followed naturally.

There is value to anything and everything, even if our culture tells us otherwise. Even if what you need to do is sleep, you’re resting your mind and body and that’s important. If you need to cry and grieve for the life we were living before, that helps to refresh your body and relieves the stress and pain. Everyone worries, that’s normal. Just remember to try to let go of the things you cannot change and focus on what you can. Even if the only thing you can change is the pace of your own breath.

Spoonie Grief

Lately, I’ve been struggling a lot with the anger side of chronic illness. It’s common, especially considering life with chronic illness is similar to going through the stages of grief repetitively, depending on the day and your symptoms.

The one stage everyone expects us to be in is acceptance, and if you write/mentor about or advocate for chronic illess it goes double. That’s not the reality. Some days, I accept my situation, and see all the bright sides, and it doesn’t bother me at all. Some days I’m just sad that I can’t do all of the things I want to. Lately though, I’ve been angry.

I’m angry at my luck. I’m angry at my body. I’m angry at the fact that there are so many people who have perfect health that never have aspirations past going to work, coming home, and going to bed. Not that it isn’t a perfectly acceptable life, but it isn’t the one I want. I want to do so many things; I want to learn and be good at so many things. So, sometimes when my body stops me, I feel so angry at the fact that so many healthy people take their health for granted.

Mostly, I’m angry that when I was healthier, I took it for granted. I skipped so many things because of stupid reasons: because I was scared, or embarrassed, or just thought I’d have time for it later.

I am luckier than most, and I can still do a lot, but I also still get angry and sad. I guess I just want people to know that if you know someone with chronic illness, and they’re usually very good about it, that doesn’t mean they don’t also have bad days.

None of this means I want anyone to magically make me feel better. We are told so often to “keep your head up”, “stop crying”,”it’s not so bad”, and other similar things. Most people don’t want to see our reality, so when we’re staring at it and dealing with it in our own way, there’s nothing worse than having someone try to brush the bad off.

I am entitled to my feelings-all of them. I am allowed to feel sad, just as much as I am allowed to feel happy. Taking away my sadness or anger just strips me of another part of the full scope of the world and my life. So I have no plans to pretend that those feelings don’t exist.

I’ve never had a problem pushing forward and fighting for as much health as possible, but that doesn’t mean I always have the positive and motivational attitude everyone expects. Spoonies learn to handle a lot of things on their own because many people are uncomfortable by the bad things chronic illness entails. If you have someone in your life who suffers from chronic illness, please try to remember that shoving the bad away is like telling them a portion of their lives shouldn’t exist, and that their sadness and anger, and ultimately their illness (which is a part of them whether anyone likes it or not) has no place in your life. But you cannot have that person without also having the negative parts of their life too.

Today, I’m angry, but that’s okay, because tomorrow I’ll get to feel something else.

New Year, Same Me

I don’t like New Years.

This isn’t because I hate parties, though, if asked to choose between a solitary activity and a party I’d probably choose the former about 85% of the time. No, it’s because I’m not a fan of the idea that you have to wait a year, for a magical day, to change anything about yourself. If that’s your thing, then you do you, but it’s not for me.

1. This opens up the next year for a lot of feelings of failure. You didn’t lose weight? Failed. You didn’t stop drinking? Failed. It’s this barrage of mental “you suck”s and then you have this expectation that the reset button is January 1st. Which for some, is 11 months away.

2. This leaves the idea that growth, learning, and success don’t also require mistakes.

3. It causes people to give up during a process that takes time, second (and third, fourth, 5th and so on…) chances, and a lot of getting back up and trying again with the same faith in yourself that you started with.

So, yep, I absolutely hate New Years. To me, these things should be tossed on their head and it should be done differently. For me, NYE is just another night. NYD is just another day. In fact, we spent today hanging out just like any other. I didn’t clean, I didn’t write resolutions, I didn’t pledge my year to health, or a skill.

I did buy some new instruments because going forward I would like to do more music related things. This thought isn’t stuck in the new year, it was with the new day. A new year’s resolution is like mud on your shoe. It starts fresh and thick and as you walk it rubs off in the grass, then eventually you forget it. But a new day’s thought, one that is less tied to time and more tied to you, is like a pet that walks with you and keeps you company wherever you go.

I want my goals to stay, not fade away as the year goes on. So I take every new day as a new chance. A new chance to drink more water than I did yesterday. A new chance to exercise. A new chance to clean, work on a skill, or change a part of me that needs work. But if I fail, I don’t think “time to quit until next year”, I just think: the next second, minute, hour, or day, are perfectly new and fresh opportunities.

No one is transformed when the clock strikes midnight. No one becomes someone new. The phrase “new year, new me” ignores the person you are. It ignores the good things about you. It ignores the process of improving, and the cycle of failure that naturally comes with it. Every day is a new chance to grow. Take the mistakes and embrace them, but don’t let them stop you from trying. Don’t forget the person you are, and embrace it. You don’t throw you away, you just add on better things. Don’t wait to make positive change, just make a new choice in the next second, not the next year.

There’s a lot of superstition surrounding new years: don’t go into the new year with anything you don’t want or you’ll have it the whole year. Well, breathe easy, because it doesn’t matter. Chronic illness teaches a lot of people that. The day changes constantly for spoonies. One minute can be wonderful and the next can be agonizing. If I quit every second I couldn’t breathe, or I was in pain, or felt nauseous, I’d never do anything.

My successes grew from a lot of moments spent on the floor. A lot of mental and physical illness moments. A lot of failures. I’ve had days that were going great, workouts happened, meals were cooked, the house was cleaned, and then the very next day it was destroyed. Those 2nd days sometimes involve me gasping for air, or wanting to jump out of my body because of some constant nagging pain, or struggling to do anything at all.

Sometimes, those 2nd days came after a doctor’s visit that destroyed my hopes. A visit that felt like my symptoms were so horrible, that I was struggling so hard, but that the doctors weren’t listening. Some visits involved waiting for tests to come back, and finding out still there were no answers.

One year, there were answers. After so many months of struggling, of tears, of shattered hopes, I finally found a doctor who listened, who believed me. I always think back to that any time I try something. I remember all the timed I failed or the situation failed me, and I think about how many times I tried again before finally getting some success. Every time we fall, we shouldn’t wait for a special day to make our lives better. We should get up, and push forward. At least that’s what I think, and I try to lead by example.

Philosophy, Entropy, and Housework

Before I start, I’d like to mention that this piece is a creative experiment on my part. It’s less of a blog about life, and certainty, and more of a blog about an idea I play around with. It’s a bit technical sounding, and this is most likely because I have a science background and am used to reading about these topics in textbooks and dry research papers (bear with me if you can).

I’ve been really busy lately because I got a new job. I’ve also been trying to finally stay on top of the housework and cooking; I’m proud to say I’ve succeeded so far. Our home is clean, the laundry is done, and we’ve eaten healthy meals 5/7 days. I’ve even had time to start a project.

I’ve noticed this week, that keeping up with all of these things has been stressful. Managing my life in a way that maintains cleanliness and order, is inherently difficult. Why? Because scientifically, “chaos reigns”. Entropy is a part of thermodynamics, it’s also used to describe the idea that everything declines into disorder, as opposed to becoming more ordered. This is a really complex idea, that has other facets and nuances. For my purposes, we’re going to think of it in a more abstract and philosophical way, and not in the typical atomic level of thinking (so, no sending me death threats my chemistry friends).

My philosophy of entropy: if something can decline into chaos, it will without sufficient energy placed into it. This is my own build on “Murphy’s Law” which has typically been quoted as, “If it can go wrong, it will,” or various versions of that sentence. For an example, I recently started a job as a data associate. I sort through data as part of a team, and we all organize everything the best we can. That’s the order and energy we put into it. If we don’t put as much energy into organizing it, as energy is put into adding new data to it (hint: we couldn’t possibly), it’ll be less ordered than ordered. In life, I try to think of things this way. If I am trying to keep the house clean, and prevent problems, it requires a lot of energy.

Whether I have the energy or not depends on a lot of things. Did I have help? Was my chronic illness making me tired? Did something happen to add more chaos than I have energy? The big one is chronic illness (surprise, I’m bringing that one up again). Does it make sense to beat myself up and stress myself out over the energy I don’t have, or is it better to just do what I can and accept chaos will happen?

I do what I can, there will be days when I cannot possibly put enough energy into maintaining order, when that happens it’s my job to accept it. Chronic illness is always like this, because often our bodies give us chaos in truck-fulls. Any Spoonie can tell you that trying to keep everything perfect is an uphill battle, and sometimes you’ve just gotta let yourself slide downhill a bit before running as far as you can again. Does this mean I just let everything get worse and enjoy life and stop stressing? That depends on how much time I have to slide, and run again.

This requires a thought about certain illnesses that shorten our lives. If I was diagnosed with a form of cancer with a historically poor remission rate tomorrow, I would most likely stop worrying about fixing my home chaos, and put all my energy into disrupting my physical chaos. My heart condition on the other hand, is not terminal. I have a seemingly extensive number of days to spend fighting the chaos and making our home nice for the man and cat living there with me.

Every system has a set amount of energy. Energy cannot be created or destroyed, only transferred. Each person has to decide where they want their energy transferred to, and that requires motivation. I always try to have a reason, a good reason, for putting my energy somewhere. My energy, especially as a Spoonie, is valuable. I don’t want to throw it at useless things, so I think about why each thing is worth it to me. My boyfriend and cat take priority because I love them; I want them to have a nice home, and comfortable lives. It’s worth the energy to me to make that possible. My body is also a priority, so when I need to I put my energy into resting, sliding downhill and relaxing for a bit. It’s a balance, and that’s always the goal. That’s the whole point of my blog: balancing my life while living with chronic illness.

No matter what you choose to put your energy into, if you find the right motivation, fighting the degradation into chaos is a lot easier.

End note: This isn’t my best writing, and I know that. I didn’t put nearly as much time or thought into this as I normally would. I’m trying to make content weekly and unfortunately my energy input wasn’t as much as the chaos. Hope to post next week; thanks for reading!

Burn-out, Balance, and Change

Go on social media, and you’ll see a thousand videos that make you laugh, cry, or cringe. Some gain their followers or reacts by being controversial. Some prefer to just produce comedy. Some are designed to help the world move in the direction the creator feels is beneficial for us. There’s always a video to find. There’s always a person behind the video’s creation. There’s always an audience that forgets about that person.

When I started my blog and YouTube channel in 2018 it was a way for me to get away from things going on in my life. They were rough, and not things I could change or control; so I chose to change my focus. I used my free time to focus on hobbies and art, and making videos from those. I used my weekend mornings (which were unfortunately very lonely) to write blog posts. It was phenomenal, because even under the weight of my problems I still managed to get up and do something that made me smile. I chose last year to only put things up when it suited me, because my life changed and posting all the time wasn’t feasible without giving a huge part of myself to the wants and needs of a social media audience. For this reason, my “brand” hasn’t gotten very popular. This is okay with me; I just want to do what I love and have fun with it. After all, this was my stress relief, not work.

My actions and choices aren’t the norm, as a lot of social media personalities choose to completely involve themselves with their channel or blog — to the detriment of their mental health. I thought about this two days ago as I watched a video from a popular video personality who makes down to earth mom-comedy. She talked about how she’s been stressed and spread thin; that her husband sent her to a hotel at night to get away from everything and just relax.

In our country it’s normal to expect a person to produce a product. Whether that product is entertainment, a service, or a usable good, we are all expected to be productive members of society. Your worth is only as good as the role you play, and that’s incredibly stressful. Don’t get me wrong, I think everyone should do something. It doesn’t seem right to sit around all day and do nothing at all; but it doesn’t have to be for the purpose of proving your worth. I think doing things simply because you love them has value. I believe going to a job every day because you love it, not because it helps more people, or saves lives, or makes the most money, is what brings happiness. Maybe that shines a light on my own values, but it certainly couldn’t hurt to consider. Because the alternative is a world where everyone does things they hate because they want to be valuable, where everyone is depressed and anxious because it’s impossible to be valuable to every person.

I’ve watched friends crumble under the pressure to match other’s expectations. I’ve listened to new college students emit waves of anxiety over making it through, whether school is something they want to endure or not. I’ve experienced my own anxiety over not being productive enough; in fact I worry so much about it that I’ve melded my hobbies into productive endeavors so that I can have productivity and stress relief in one nice little package. A real anxiety reducer…if you do it right (I don’t always do it right).

My housekeeping job has been incredibly fulfilling. I help patients get what they need each day, within the tasks I’m permitted to do without an STNA license. Some days I can make them laugh, or not feel so alone, or get them water and a blanket, or just keep their room clean so it feels a little bit nicer. It’s a job that’s worth doing, that needs doing. It’s a job that isn’t for everyone. The days are long; in my case it’s 10 hours at a time of cleaning patient rooms and function rooms. It’s a job that, if you use common sense and good time management, plus some good interpersonal skills, you can get through quickly and smoothly. It takes navigating patient preferences, surprise messes, and day to day changes, all while cleaning up the things that happen in a medical setting.

It can be gross. It can be tiring. It can be thankless. A lot of the time, however, I receive tons of thanks from patients and their families and our staff. The team I work with is supportive and adaptable, and our supervisor is excellent at her job. They’ve been my home away from home for over a year, and the housekeeping staff have been my work family for about 6 months.

I had planned to stay two years.

I wanted to be there for them after two years of 10 different trainees walking out on the job. Of not getting their vacations, and working understaffed in a field that isn’t exactly easy on the body. Life didn’t exactly agree with my plan. I put in around three weeks notice, and I’m trying my best to do a great job for all of it until I leave in mid-November. Part of me feels like a failure, the other part feels like this is the right decision.

Society tells me I should stay in this job, regardless of how that affects me or my family, because I’m producing a valuable service. My ideals tell me it’s time to go before I burn out trying to balance work and home life; I’m needed at home in so many ways.

I could go into all the detailed reasons I’m needed here, to cook, clean, do laundry, and provide support wherever I can because the people I love need it. I could go into the health reasons that the physicality of the job is taking its toll and I need to find something just slightly less rigorous. The job is a sprint, whereas I’m more of a slow marathon kind of woman. Three days of 10-hours in a row, sometimes four days, and then one or two days off to get the housework done just doesn’t work when you’re trying to get meals on the table each day, and the spaces you live in clean. Waking up at 4:30 AM, and then the next days waking up later for a different shift or a day to fit my family’s schedule, means my circadian rhythms are extremely off. My body is in a constant state of jet-lag.

If I had a different home life, if I was at a different point in my life, or if my body had just slightly more endurance, would mean I could easily continue working this way. For now, I need something different. I need a regular schedule that’s also either flexible, or within time frames that let me cover my responsibilities at home. Some people see this as a weakness, but I see it as a strength. If I find a job that fits well with the rest of my life I’ll be a more productive employee. I’ll be awake and alert, well nourished, and ready to take on new challenges each day. I won’t have the same level of stress that I do now. I won’t be worried about how I’m going to get it all done, because I know I’ve planned for my responsibilities, and a few surprises too.

I don’t want to be like the social media personalities who burn-out and need to get away at midnight. I don’t want to be that person who loses the important parts of themselves and their lives for a job, when there are easily alternatives which suit me better and companies I can be even more helpful to. I also don’t want my career to be the marker of my value. My health, to me, is the most important thing because if I lose it at 30 from burn-out then everything I’ve done will be for nothing anyway.

I want to be productive, I want to fit into society’s idea of valuable, I want to be that model employee. I also want to be a good girlfriend, a good daughter, a good friend and pet-owner. Someday, I want to be a good wife and mother who helps keep her family healthy. I want to be a good example to my children, who can look at me and see a mother who knows her limits, and balances her priorities in a healthy way. The thing that makes life great is the process from start to finish: what we do with this time, not how we end it. Money means nothing if I have to spend it all on medical bills. The approval of a company means nothing if I’ve alienated the people I love, focusing on work so much I forget to actually love them. Our lives are a balance, and sacrificing that balance feels more like failure to me than failing my original plan to make adjustments. Small failures help us grow, but if we fail to find balance in the process of our lives—that’s sometimes too large of a failure to come back from. I’m not afraid to fail, but I’d prefer it be in the ways that help me grow.