Tag: Chronic Illness

Try Before Die

~ Olivia Hill ~ 1 Comment
Daily writing prompt
Do you have a quote you live your life by or think of often?
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When I was in high school, I found a quote online:

Anyone desperate enough for suicide should be desperate enough to go to creative extremes to solve problems: elope at midnight, stow away on the boat to New Zealand and start over, do what they always wanted to do but were afraid to try. — Richard Bach

When I’m going through a rough time, I try to remember that.

If the options I’m comfortable with are no longer options, I try to reach out and choose one that might be uncomfortable at first, but might solve more problems than it causes. Needing to adjust to a new way of living, new support systems, and new challenges are things that I can learn to overcome. Death isn’t something anyone can come back from; if I’m willing to die, I should be willing to live first.

FOMO

~ Olivia Hill ~ Leave a comment
Daily writing prompt
What makes you nervous?
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As a Spoonie, chronic illness isn’t who I am, but it affects every aspect of my life. My friends and family, career, pets, hobbies, thoughts, wants, and day-to-day are all changed because of the chronic illness I have. This means I miss out on some things that I wish I could do. More than that, I end up looking back on choices I made as a kid and as a healthy individual and think, “I could’ve done so much more, but I thought I had more time”.

I faced the possibility of dying young, at the age of 4, so I’ve always tried to take advantage of life, that’s not new. As a kid, I thought I’d have more time with my body working normally, so I rested more and said no to more things than I would choose to now. When I got sick in 2015, my first thought was how many times I should’ve said yes to an opportunity or invitation. In some ways, I was granted a second chance to experience more of life; I still have a lot of my functionality left, and I’m extremely lucky.

What makes me nervous, is waking up and looking back on my life and realizing I missed a chance to experience something. I try hard each day to make sure I’ve done everything I had the energy to do, but also while resting properly so I don’t lose more of my health. Finding that balance between rest and experience is stressful, and a lot of people with chronic illness deal with it. When I’m resting my body, though, I try to think “I’m resting now, so I can fully enjoy the next moment I have energy for”. Treating recuperation this way helps quiet the nervous ticking of the clock in my head, telling me I could be running out of time. The rest is learning to accept that there are just some things I can no longer do, but there’s still so much out there for me to experience. I’m not really missing out, just taking a different kind of tour of life. I’m always going to be nervous, but if I do my best to experience the present as much as possible I’m sure I’ll have fewer regrets.

For My Health and Self

~ Olivia Hill ~ Leave a comment
Daily writing prompt
Describe a positive thing a family member has done for you.
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There are a lot of ways to become a well-adjusted adult and a lot of ideas of what that might look like. For me, the traits I value that I believe much of society values as well are: respect, responsibility, self-motivation, and compassion. There are others, but my parents helped instill these in me in ways I feel made my life easier, not harder. Specifically, my mother, who consistently taught me about the balance between pushing yourself and resting. In my life, she’s the OG of the “work-life balance”. She respected my autonomy and personal boundaries without fail, and stood up for my freedom to be myself and choose my own life.

I can’t narrow-down what she’s done for me to just one action, but I can give you two major times her positive effect rippled into years of my life. When I was young and still figuring out who I was, and everyone had an opinion on what that should be, and when I was an adult and my condition started to become more extreme and debilitating. Both times, her respect and compassion helped me to grow and build those traits for myself.

When I was younger I was never forced to go to family gatherings, extracurriculars, friend’s houses etc. but was asked to make the choice myself. People may disagree with this, but I think it helped me grow into a better adult because the choices weren’t someone else’s, they were mine. The consequences the arose from those choices were then mine too, and I learned to take responsibility for them. My mother gave me the room I needed to figure out who I was, build confidence in that identity, and to make choices in my life that aligned with that. I knew that if I chose not to visit someone or attend an event I had no one else to blame if I didn’t like the end-result. Not only that, it also meant that every interaction I had was authentic and un-forced. It led to my own self-motivation in the tasks I took up, and a sense of care and integrity towards everything I do. She also taught me about respecting my body too: knowing when I was too ill or exhausted to keep pushing. It’s been a helpful balance that lets me prioritize the things important to me, while knowing when to recuperate for the other important aspects of my life.

In 2015, I was struck with temporary, moderate gastroparesis due to a virus, which meant I was extremely malnourished for an extended period. It also contributed to my pre-existing arrhythmia becoming more severe and chronic, and to the development of a second type of arrhythmia. I was miserable, and bedridden, and at the time we didn’t know what was wrong. Being a cardiac nurse, my mom had seen many patients decondition to the point of requiring even more treatment to get back on their feet. My entire life she’d stressed the need for rest when we were feeling bad; this time she was stressing the need for growth in a safe environment. Every day, we walked while my dad waited at home near the car, in case I passed out or needed driven back home. I truly believe this is why I’m not wheelchair bound today; considering my first nurse in a dysautonomia clinic I was admitted to said, “I didn’t realize you were my patient, you’re the first one I’ve had in years with these issues that isn’t in a wheelchair.” My mom worked hard to show me how to tell for myself when it was important to rest and when it was important to push myself. Every day that I am grateful I can still travel without a wheelchair, eat without a tube, and live without a pace-maker, I have my mother to thank for.

My mother gave me years of her time and compassion; on its own, that’s a hugely positive thing to do for someone. By example, she also taught me to respect others and myself, have compassion, take responsibility for the direction my choices lead me in, and to motivate myself to get work done or to rest when needed. There are so many others in my life who have helped give me those lessons too, but on top of all of those things I have my mother to thank for the amount of physical ability I still have left. She made sure I kept as much of my health as I was able to, and that is the most positive effect I can think to have on someone. Thanks, Mom.

Perspective Over Loss

~ Olivia Hill ~ Leave a comment

Describe one positive change you have made in your life.

As most Spoonies will know, chronic health issues often force us to make changes in order to maintain our functionality day-to-day. I’ve consistently adjusted my life to accommodate my disability in what feels like a never ending cycle of loss. When this cycle first started, I grieved a lot for the things I may never do or enjoy again.

Throughout the years, this viewpoint might have crippled my mental health if I hadn’t made one positive change: my perspective. It’s absolutely normal to grieve for the parts of your life and health you’ve lost, but I was interested in changing how I felt about those things. It sounds easy to someone who’s never had to do it, but it can be one of the most difficult aspects of chronic illness to manage.

When I was younger, in the immediate aftermath of 9/11, I’d heard that people late for work that morning, out sick, or otherwise kept from the Trade Center buildings due to unforseen circumstances, survived. This knowledge evolved into the idea that sometimes a moment of loss or negative circumstance can end up being positive in hindsight.

I try to remember that the change and loss I’ve undergone, due to my health or other circumstances, might be the thing that pushed my life in the best direction for me. There are an infinite number of ways to live life, and when I stop fighting the necessary changes I end up in situations better suited to who I am as a person. I can’t imagine another choice I’ve made that has had a more positive effect on me than holding that perspective.

Forgiveness

~ Olivia Hill ~ Leave a comment

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 https://www.medicalnewstoday.com/articles/gaslighting#gaslighting-examples

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

~ Olivia Hill ~ Leave a comment

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

~ Olivia Hill ~ 1 Comment

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

~ Olivia Hill ~ 3 Comments

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

~ Olivia Hill ~ Leave a comment

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

~ Olivia Hill ~ Leave a comment

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 www.memrise.com (which does have more than just language lessons) and www.khanacademy.org 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.