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.

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!

Excoriation Disorder

Apart from my physical illness, I also struggle with mental illness. The ones easiest to guess are depression and anxiety, but those don’t affect my functioning nearly as much as one I’ve had for 17 years and counting: excoriation disorder.

When I first got it bad, I was in 5th grade, age 10. I’d had it before then in the form of scratching at my scalp until it bled, but in 5th grade it turned to the more recognizable skin picking people see with excoriation disorder, a.k.a dermatillomania. I had acne, which meant I was scratching and picking at pimples, but I was also picking at spots that weren’t anything except itchy. I grew up learning to wear bandanas, hats, and makeup regularly. I never failed to put something on to hide my wounds and scars.

My days, weeks, months, and years looked like this: wake-up, shower, peel at dried and healing skin, put makeup on, walk out the door nearly in tears saying “I’m ugly”, wishing I knew why I couldn’t help but do this awful thing to myself, then come home from school and go straight to a mirror to pick, wash my face, and curl up in front of a video game.

I missed out on a lot of fun things because I was scared they would cause me to have to show my skin. Swimming, summer camp, sleep overs, late nights with friends after I’d spent hours in front of a mirror and looked too awful to want to go out.

I tried everything. Covering mirrors, warm washcloths to aid in healing, acne creams, keeping busy, all of them failed. The things that did work the best were the warm cloths and staying so busy I didn’t have a chance to pick. Some days I would have to accept that I was going to look “not-my-best”, and that it was okay because I was going to heal. There were a lot of tears, a lot of lost friendships, and a lot of frustrated days with my parents just wanting me to be better.

When I was 10, dermatillomania wasn’t even a diagnosable disorder. When I was in my teens, the APA decided it was a thing, and that it had its own classification among other conditions like trichotillomania (hair pulling), which were grouped together due to their dual nature: a mix between cardinal behaviors of addiction, and those of obsessive compulsive disorder. When I started college, they then called it excoriation disorder. It had a name. I had an answer. I had something to fight, something to treat, something to see a doctor about.

Sadly, there’s not much to be done. Similarly to addiction and OCD, excoriation disorder varies in cause, severity, and form of treatment. Sometimes, there isn’t an effective treatment and you just have to work through it day by day. Some people find behavioral therapy helps, or counseling to assist with the root cause (if there is one besides brain chemistry), for some it’s a matter of removing yourself from the temptation. Many people avoid mirrors, or being alone for too long. For myself, therapy was a failure.

Maybe they should start an AA for skin pickers. Maybe it’d help to get a coin for a year, and pats on the back each month you go without destroying your face, arms, legs, and back. It feels like a constant battle because it is. I’ve spent every day, for 17 years, fighting my brain’s constant desire to pick at my skin until it bleeds.

It’s not about hurting myself, it’s not about destroying my face because I hate looking at it, it’s not some obsession with blood or pain or wounds. It’s an overgrooming instinct. A desire to have clear skin, empty pores, and an even toned complexion. I would pick until I was certain all the dirt and oils clogging up my skin were gone, but it’s not a conscious decision. It’s an odd instinct, almost out of my control. If you’ve ever has the urge to scratch a mosquito bite until it bleeds, or pick at a scab or dry skin, then you have experienced that instinct. Mine, however, just happens to be out of control.

Sometimes, the best way to fight it, is to be more meticulous and methodical about my skin care. To remove instinct from the equation and have rules much like a doctor would when treating anything. I would think “blackheads and whiteheads are fair game as long as there’s no bleeding or pain” and “dry skin, okay, I can take care of that, but scabs I need to let heal” and I had a set routine of washing, moisturizing, and grooming that made me hyper-conscious of my actions and thoughts. This helped, but the minute I became tired or distracted and got lost in my thoughts, instinct would take over and I would lose two hours to “face grooming”. Which resulted in more picking just out of sheer anxiety.

This disorder comes and goes with my stress. Lately, my stress has been high and so my skin is a wreck; the skin picking is at the worst it’s been for a year and a half. There are red wounds all over my face. I would post a picture, but the fact that I’m not should tell you something: I am horribly ashamed of my skin. I know that most people would understand, seeing a picture of my face, that it’s a disorder and it’s healing. But…. my anxiety is too great and I cannot force myself to photograph it.

What I want, is to raise awareness. Awareness that this is not completely under my control and unlike an alcoholic who avoids the bottle, I cannot hide from my own skin. I want to give tips to those struggling: warm compresses, showers, and baths, can help take away the urge and soothe skin, and staying busy and among people who understand is helpful to keep your hands (or tools) off of your skin. I want to explain why sometimes, I hide away, and there’s nothing on this planet that could get me to come out, especially without makeup. The building could be on fire and I’d probably sit here putting foundation and concealer on (I wish I was joking but it’s also okay to laugh, because that image is pretty funny).

As a Spoonie, I have enough on my plate. My excoriation disorder feels as much a part of me as my heart or GI conditions, maybe more so. I am always going to fight it. I am always going to work to manage it. It’s one more thing that takes my spoons away. One more thing that affects my daily functioning and causes me to miss out. I, like anyone with chronic illness, constantly wonder what my life would’ve been like if I didn’t have excoriation disorder, but I also wouldn’t be the person I am. I wouldn’t be as understanding or compassionate, I wouldn’t know how to soothe wounds and spot severe infection. I wouldn’t know that heat works well, but a combination of heat and ice do wonders for reducing inflammation for acne as much as they do for muscular wounds. I wouldn’t know that sometimes people do want to visit friends but there are other factors in play for their decisions. I wouldn’t know how to stand tall (well, as tall as a 4’10” girl can) and confident in a room full of people and make a speech (something I’ve had to do) when I feel my least confident and my most disgusting.

I know more about the human condition than I ever would have if I did not have the illnesses I have. And I am proud of that. I am okay with being sick, if it means I can help someone else with their illness. You do not always have to receive good, to put more good out into the world. I will never regret anything, as long as my life makes me more kind and compassionate as opposed to bitter. My illnesses have taught me that I now have knowledge I did not have before, and I fully intend to use it to benefit others.

It certainly beats going home and picking at my skin, doesn’t it?

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.