Sanity 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 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.


Ambition

Every day for me with chronic illness is new. Every day as a person is new. I also feel like a circus juggler half the time: a ball for illness, four balls for four jobs, a ball for friends and family, a ball for hobbies, a ball for this blog, a ball for my YouTube channel, a ball for each Instagram page. So much to juggle. When I get overwhelmed, ultimately I have to throw some away. Recently I left two jobs, and I’ve decided to treat my social media as a secondary goal. Posts, and content will come at a much slower pace.

To me, those choices simultaneously lift a weight off of my shoulders, and break my heart. No matter what, I have some juggling balls I can’t drop, and that means giving up some that I love. I know I’m not the only one who feels this way, it’s pretty normal. But it never fails to make me feel like a quitter.

I’m all together a perfectionist, ambitious, and a firm supporter of maintaining one’s health and well-being. Unfortunately, my body is insistent on me dialing back my ambitions a little.

I want to be that person, the one who can do all of her jobs on time and correctly. The one who can show up for all the social gatherings. The one who can do all the housework, errands, and cook all the meals. The who can ace all of her classes and never miss a school day. But, that isn’t reality, for anyone, and especially not me.

I make mistakes, I get tired, I lose motivation, and my body shuts down on me. Nothing goes as planned, and people are rarely as understanding, or as helpful, as the ideal. That’s life. That’s reality. It’s the way things are expected to be, by everyone. No one can do it all. No one is perfect. No one can do everything without help.

It’s hard, being ambitious and being sick. There’s the constant question of: “is this really my limit? If I didn’t have this illness how much more could I do? How much am I missing out on?” The answers are, it is right now, a lot, and more than I’d like, in that order.

Every missed party, every disappointed friend, every job left undone, is a crack in my confidence. I worry if I’m really going to be able to do the whole “adulting” thing.

Then I go out and actually do it.

And I realize, if I’m stressed, and sicker from the stress, and missing out because of that…. wouldn’t it be better to just do the things I know I have time and energy for? Adulting is just doing what you have to do. Pushing through the stress, being responsible, and planning your time wisely. And I can do, and have done, those things.

I don’t like to spend too much time away from some kind of work/hobby. I like keeping my hands busy because it makes me feel like I’m using my time wisely (and partly because that’s how I deal with being hypersensitive and avoid sensory overload). And time always feels like it’s moving too quickly. And it is, but that time passing is not unique to anyone:

“The present is the same for everyone; its loss is the same for everyone; and it should be clear that a brief instant is all that is lost.”

~Marcus Aurelius; Meditations

One thing about going through sudden illness is that it reminds you how quickly things can change. In an instant you can lose your ability to eat, walk, or breathe. In a moment you could lose large parts of your life. So I spend every moment trying my hardest to make the most of my time. Trying to avoid life’s bullshit and pettiness and just live my live. I don’t always succeed. But I always take a good memory from every experience, good or bad. Even if all it is, is a warm cup of tea, or a brief moment of silence in a shouting match, or a warm heater in a cold room. I try to remember that even when I’m doing nothing, I’m still appreciating my life.

Leaving two of my jobs sucked, but the time and health I’ll gain from that choice will let me enjoy other things I like doing. Sometimes being ambitious is great, because I throw myself at certain kinds of experiences. Sometimes it’s not so great because most of my stress is pressure I put on myself, to succeed, to help, and to grow every day.

No matter what, I’m never going to stop being ambitious in my own way, and I’m never going to be able to do everything I want to. But, it would be pretty boring if I did everything I wanted as soon as I tried. Life is full of many brief moments, and we need things to fill them. And if I can grow in each moment, then I’ll feel like I’ve lived my moments to the fullest, illness or not. And if through my life I lose more of my health or abilities, then I’ll just have new goals, new juggling balls, and new moments.

Updates: Things to Come, YouTube, and Why the Delay

It’s been a bit since my last post here on WordPress. Lately my focus has been on work, school, and wrapping up some YouTube projects. I’ve got four jobs now, which has been an interesting juggling act with school.

What’s coming up:

  • A blog about what tattoos have meant for me and my roommate, especially in maintaining our mental health.
  • A blog about fibromyalgia and other chronic illness from the perspectives of people who have them. This particular blog may take some time since I’ve got to sort through surveys and statements.
  • Some YouTube videos of small holiday projects, sewing projects, and more videogames and puzzles.

What to do in the meantime:

If you’re looking for some things to do, there’s my own social media, as well as some channels I enjoy.

  • My Instagram: Lockstockandspoonies
  • My Facebook
  • My YouTube Channel
  • Our Cat’s Instagram for some cute kitty pictures: Yurithechainchomp
  • The podcast “Terrible, Thanks for Asking”
  • The Frey Life’s YouTube channel. Mary Frey lives with Cystic Fibrosis. Her and her husband document their lives and give motivation. They’re a Christian family and Mary says she finds much of her strength in God. Her posts have an uplifting tone.
  • Healthcare Triage. A good place to go if you’re looking for information on how testing and research works, different health risks, and financial information in terms of healthcare. They’re a good overall healthcare channel.
  • SuperKian13. Kian Lawley’s YouTube channel. Some good fun. Pranks, games, and other lighthearted stuff.

Thank you for your support, and I hope you all enjoy the upcoming content!

Walking Away

I saw a post on Facebook highlighting the importance of knowing that “it’s okay to leave”. I don’t know the OP but if you’ve seen it and know who it is please comment or email lockstockandspoonies@gmail.com so that I can cite them.

The post talked all about it being okay to leave uncomfortable situations. It’s okay to leave abusive or toxic relationships. It’s okay to leave a school or job that isn’t working out and is making you miserable. It’s okay to leave family dinners, friend gatherings, competitions, dates etc… if that thing is making you so uncomfortable or miserable it causes you to fear for your safety or causes damage to your mental or physical health. Hell… it’s okay to leave because you want to. It’s okay.

What I did want to talk about is what that means to me personally, and maybe you feel the same way or maybe you don’t. I want to hear other’s opinions:

My close friends and family know me as a “100% gamer”. I want to beat every level, side quest, and storyline. I want every prize. I want every costume change and trophy. They also know I rarely actually do that. Partly because I have limited time and am not always good enough. Partly because I’ve learned to walk away from things that expend more of my energy than they’re worth.

I’ve spent days on games that I no longer enjoyed, just to complete a goal. I’ve “gone down the rabbit hole” hundreds of times – failing to eat, drink, sleep, or take breaks. I’ve gotten so frustrated at a game that it’s eaten at me for days.

It took years for little (okay… younger little) me to learn that it was okay to go to bed at 1 AM, instead of 5 AM without a particular achievement earned in a game. It took countless uncomfortable meetings and miserable days before I learned it was okay to switch the direction my life was going in to a completely new one – to change my college major, decide to leave research, to start working at a job I love instead of one everyone approves of.

So far, I’ve never regretted leaving a situation when I wanted or needed to, but there are countless moments I regret enduring instead of doing what was best for me.

That said, I also believe in putting 100% in. I don’t leave something just because it’s a challenge, or I had one moment where I messed up, or because of one person whom I will rarely interact with. There’s this line in the sand that marks the territory between quitting, and wisely abandoning hopeless causes/physically or mentally harmful people and situations.

My goal is to figure out what my own personal line is, without judging someone else’s.

I may not have a problem with someone telling me that what I just did was stupid, but another person might be deeply affected by it and that would be their line. Everyone is different, have their own past experiences, and their own traumas. It’s a very personal decision to walk away from anything, and while others can give their advice and support, ultimately it’s the individual’s choice.

To me, the important thing is: your life is your own, and no one should ever have to put up with things in their life they’re not comfortable with.

Zech Whitby

“I love you, know that…..You have the world ahead of you, and it will be great”~Zech Whitby

On September 6th, 2018 the world lost a good man. Our friends at Bitter Hearts Tattoo lost a part of themselves.

My roommate and I have found a sort-of home at Bitter Hearts, and we care about the people there. Last Thursday, while sitting in class, I received a text from him. It was a screenshot of a post that Zech made on Facebook the night before:

https://www.facebook.com/plugins/post.php?href=https%3A%2F%2Fwww.facebook.com%2Fzech.whitby%2Fposts%2F1817868241667377&width=500

What happened with my roommate and I next doesn’t matter. What matters is what Zech wrote. Please read it all. Then read it again. Then show it to everyone you know, because that’s what Zech would’ve wanted.

I don’t have much to say, because there are no words for the pain that not just I feel but that our friends at Bitter Hearts feel. No words for what I see in their exhausted faces after a week of his absence.

What I do have to say is this: There ARE people out there who will listen. People who want to help. People who don’t ever want another person to end their own life.

How do I know?

That Saturday, the 8th, we attended a gathering at the shop of everyone who’s ever cared about Zech who was able to be there that day. Most got tree tattoos (his specialty) in memory of him. Over 130 of us got tattoos and are now connected by our love for Zech. Some drove hours, or flew in from other states; some came to help give tattoos. Within the first 30 minutes, they had around 40 people signed up. The cost of the tattoos plus any donations were given to Zech’s family to help pay for funeral costs. The turn out was overwhelming. What was most overwhelming was how much we’d all wished he had just asked for us all to come. How much his friends and family wished he could’ve seen the crowd, the tears, the family of people come to pay respects and share their memories, and their love.

Every one of those people would gladly give their time to listen to someone who needed it. To help someone who was giving up, whether they knew them or not.

If you or someone you know is struggling with suicidal thoughts please call the suicide hotline: 1-800-273-8255 and the text line is: 741741 (text “TALK” )… The national suicide prevention website also has a computer chat feature.

“I’m sorry I wasn’t there.”-Zech

If you would like to see Zech’s art, please check out his Facebook page, personal instagram, and his Dead Trees Art Insta.

If you would like to see Bitter Hearts collective work as well as posts for Zech, please check out their Instagram page.

Missing Work, Loyalty, and Determination

These past two weeks have been stressful, to say the least. My overall sense of calm, loyalty, judgement, and resilience were tested in ways I did not see coming.

First, I had a minor health complication that normally would have been a quick fix in the form of an outpatient procedure with minimal fuss. Unfortunately, my health insurance does not cover my doctors whom have been familiar with my personal history (even though the company said it would). This meant I could either tackle the problem with rest and an old medication which I was not fond of, or go to a doctor who doesn’t know me and certainly wouldn’t understand how my current problem tied in with my complex history. I chose to rest.

The American Medical System, everyone…..the one place you’ll find people choosing not to see a doctor to avoid bills for visits and procedures which may make them worse or that would not be helpful even though the prices make you think they would be the best in the world. (If you’re looking for a good YouTube channel about healthcare and insurance check out Healthcare Triage)

I had to take time off of work to heal, which isn’t ideal considering I can’t exactly afford that. Now, my much needed student loan refund is probably going to go towards supplementing that lost income.

On top of that, I took more time off to help a friend with their own personal health crisis. Which is where my patience was tested. My friend was not the problem. I will not get into details, for their privacy and general courtesy for all involved. I don’t see the point in publicly shaming someone in this particular situation.

Details aside, I learned things about myself and have found I’m quite proud of those discoveries. I found that I’m willing to stand up for a friend and protect their freedom to choose, and their basic autonomy. I found that I could withstand mental intimidation and childish retaliation and respond with maturity and a sense of calm and rationality. That’s not to say I didn’t feel anger, because I was beyond angry, but I didn’t act on it and I am glad I did not.

I was deeply invested in maintaining my friend’s freedom and autonomy, probably because it’s something many of us in the chronic illness community lose for many reasons. Sometimes, it can’t be helped. But when another person over-steps their bounds and threatens, needlessly, someone else’s freedoms that makes me extremely upset. I believe that people are healthiest when they’re given the chance to be responsible for their own lives, decisions, and bodies. I’ve seen people thrive once they had full control over these things.

Additionally, no one can grow or learn if they only take other people’s advice or orders; if you did not make the decision yourself there is always the question of “would it have turned out better if I’d done it my way?”. People typically learn better when they experience consequences for themselves, instead of listening to the consequences another experienced. This isn’t to say that we should all go and do things someone else has found to hold undesirable consequences; advice should be listened to and other people’s viewpoints taken into consideration. But don’t forget to form your own opinions. Trust your gut, your heart, and your mind, while also listening to the opinions of multiple people and sources to form your own opinions.

Whether it’s your healthcare, or your personal life, or your career or education, your decisions are your own and no one can (and no one should) take that away from you. The very few exceptions are if you are directly harming another person, or yourself, or if your own mental illness has made reality very…. cloudy. But even in these circumstances, there are people who have the training and the knowledge to assist and whom we give this authority to, and there are people who do not.

I know a lot of this depends on the situation and which person is trying to take away the free choice of another. In my own situation I asked for advice from multiple people and I stood by what I strongly felt was right. I will never regret that.

I’m back to work now and excited to start the new school year soon. I hope I’ll be able to bring you all more content and that we all have a low stress week. Thanks for reading!

Stress, Reviews, and Trying New Things

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

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

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

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

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

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

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

Anxiety, Heat, and Choosing What Works

The heat is not my friend.

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

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

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

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

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

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

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

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

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

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

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

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

Time, Energy, and Changing Plans

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Saying yes, no, and a limit on caring.

It’s been a couple of weeks, I think, since I’ve posted anything. If you are, or know someone who is, currently in college you’ll also know it was about that time. That magical time when anticipation, fear, joy, panic, and procrastination find a way to coexist in our brains: finals.

I’m really glad this school year is over. I still have no idea what my grade in Elementary Russian II is, but I passed Immunology with a C.

Now, before you think I slacked off…. I did. I had a rough semester mentally, physically, and emotionally for so many reasons. So my school work took a back seat. That’s okay. Finals was me spending every single day trying to learn a semester’s-worth of work for two classes. I gave it my all and I’m proud of that.

It also was a signal that I needed to make a change in my life and get back to resources I’d left behind when I moved to this apartment. I had stopped reading, meditating, and generally living with a schedule.

I like schedules; so much so that I have been diagnosed with obsessive compulsive personality (my obsessive and compulsive thoughts do not reach a threshold of being disruptive to my life). Here’s why: I know what to expect, mostly, of my day. I know my goals. I know I’ll have time for my health. I can also adjust my schedule when needed now, because I had to learn that skill when I got my illness. Now I can shower at an unplanned time, miss my favorite shows, move a goal to a different day, and put my meals and bathroom breaks off for later. These are things I had a hard time doing as a kid and it drove my family crazy at times.

I’ve grown a lot since middle school, and left a lot of negative aspects of myself behind. I tried to hold onto some of the more positive skills I learned from my strict schedules. I’m trying to make use of them now, this summer, to gain back my mental health and well-being and my inner and outer peace.

I’ve made a schedule of reading, bike riding, videogames, knitting, and other hobbies. I want to keep myself busy to fend off depression. But, my schedule isn’t so rigid. It flows, and can change if needed to accommodate need for sleep, rest, or time to help a friend or myself. That flexibility wards off anxiety.

Balance is exactly what I’m going for. My summer is my healing time. If you’re a spoonie, you understand why that balance is important. If you’re not, then you probably still know but maybe aren’t forced to find it as often.

All of this considered, there’s one added obstacle: I care too much and I help too much. Let me clarify: there’s nothing wrong with caring about and helping others, but it can become unhealthy when you take on someone else’s responsibilities or work too hard to make their lives easier when they’re not doing that for you.

I got caught up in a “care cycle” and let myself get swept away by anxieties and concerns that weren’t mine to have. I worried about my friend’s successes beyond what I should have and sacrificed my own needs and moments to help them. This is a bad habit I still need to learn-away. I was having panic attacks about whether their grades were alright, whether their health was good, whether they were in a good place emotionally. All the while, my grades were not alright, my health wasn’t as good, and my emotional home was looking more and more like it needed repairs and a new coat of paint.

I helped someone with their own oxygen mask before I put mine on.

I’ve had to let that caring go. I still care deeply for my friend, but I’ve had to let them live their life and make their own mistakes, and deal with their own consequences. I probably did seem like an overbearing helicopter mom. I’m not sorry for my caring and the help I gave, but I think now’s the time to move on.

Why this is important: sometimes living with chronic heath issues makes you acutely aware of how bad negative feelings and experiences are. It makes you want to help people not have those feelings or experiences for themselves. If you’re a Spoonie looking out for someone else before yourself (the complicated exception being your own kid) it may be time to look out for yourself first.

If you’re a caretaker, or family member, maybe your Spoonie friend needs more care. Maybe they just need you to care for yourself so that they can relax and watch you be as amazing as they probably know you can be. Give them the chance to say no to you, so they can say yes to their own needs.

I know how to say no to others. It’s time to say no to myself sometimes too. Saying no to focusing too much on someone else’s success when my own is faltering. I hope this summer will be an experience of learning how to do that.

Side note: I’ll be reading more this summer, so I may end up doing book reviews as part of my blog. Especially if those books are on the topic of health and wellness.