My newest blog post is a vlog on my YouTube channel because I’ve been too busy to sit down and write.
You can find it here.
My newest blog post is a vlog on my YouTube channel because I’ve been too busy to sit down and write.
You can find it here.
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?
I’ve been disconnected from current events lately. I care about how the world is doing, not just our country, so it’s going to require some significant energy to schedule time to read the world news from good sources. Part of the difficulty of my health is that I have far less energy (or spoons, for my Spoonies out there), and sometimes that makes it difficult to find the mental fortitude to handle the stress of the news; whether it affects me or not. I have to protect my mental health so that I can get up every day and hopefully at some point do something for other people. Lately, our world news has been heart breaking and I have to save the “spoons” to handle it.
With this in mind, I think I’ve got to schedule a small amount of time daily to get caught up. Another difficulty is that I’m just busy. I have a job daily, and since it’s a physical job I get worn out easily; the rest of my energy goes to cleaning my apartment, taking care of our cat and my two snakes, basic hygiene, and an attempt at having a healthy social life (which includes making gifts for babies of friends and family because that makes everyone happy).
While I think about all of this, it makes me think about what I’m capable of, what I don’t want to miss out on, and what experiences I’ve had that I didn’t think I’d ever have, or would never have again after getting sick. With all of this in mind, I decided to make a bucket list. It’s going to be long, and have all the little things too. If you make it through it, or if you don’t, comment with your own bucket lists! I want to see what other people value in life experience, and what people think is interesting. Especially, if you’re a Spoonie or even if not, let me know what experiences you’ve had that you’re not sure you’ll be able to have again, or things that you wish you could do again even if you know you probably can’t. I hope some people comment because even if in the chronic illness community there’s a feeling of “there’s so many basic experiences I’ve lost” or “no one will care what my bucket list is because I’m so limited”, it’s also important for us all to know and remember: your life matters, what you do, what you can do, and what you want to do, matter. It doesn’t matter what it is, or how it compares to someone else; all that matters is that you do something with your life, even if all you can do is think thoughts, and read blogs from twenty-something college students. You’re alive, you’re making it through one moment at a time, and that has importance.
Here’s my bucket list:
I think that’s everything for now. There might be more later, there might be less, or I might be forgetting something. But maybe that’ll tell you all a bit more about me, and reassure you that bucket lists don’t have to be extreme, dangerous feats like skydiving. It’s your life; set your own goals, ones that make you happy.
I wanted to make a full blog post today but that didn’t work out. It’s incredibly hot here for a cardiac patient in Ohio. I’m completely worn out from taking care of forms for school so that I can continue to receive financial aid. The dreaded maximum time frame has been reached and now they want to know why.
Life. Life is why.
After transferring from a completely different school, in a completely different major, from a bad experience (maybe it’s time I wrote about that in full…. soon.), and into KSU and then my body decided not to work right anymore. So, I’ve got to explain that to people who don’t know me, and most likely care more about my grades on paper than they do me as a person. Frustrating.
Anyway, no blog today because I’m working on some sewing projects and personal gifts and resting my body. Here’s what you can look forward to in the future:
If you have a story you want to share with me, please email email@example.com and let me know whether you would also like me to share that story on this blog or on my YouTube channel. Anything related to chronic illness, or your experience growing as a person is definitely appreciated. I may choose not to share but I will try to share what I can.
I recently finished “Beyond Powerful: Your Chronic Illness is Not Your Kryptonite” by Lala Jackson. I loved it! It goes over the 7 superpowers (with an 8th bonus online) Jackson believes our chronic illness gives us. These “superpowers” are traits that anyone can gain, but that our battles and co-existence with illness have given us either more easily, faster, or in a way that was unexpected.
I won’t spoil the book (read it), but I will tell you about my favorite parts:
There’s a point where Jackson discusses owning your knowledge of your body, AND the unusual behaviors/activities we pick up to maintain our health and sanity. I’ve had to learn, and relearn that skill over and over again in order to remain healthy.
Another good point is that we are extremely talented at accepting our reality and not getting distracted by it. Illness is part of our lives, but if we get too distracted by it we’ll miss the rest of our lives. The people, the moments, the hobbies, activities, surprises etc… I personally have grown up being the type of person who never thought bad things were “bad” and ended up coming off a bit like Phoebe from “Friends”; she tells horribly sad stories with this happy calm that makes everyone else uncomfortable. I would say things like “Yea, I can’t eat without these enzymes or I get really sick” or “that seven months was absolute torture because I was trapped in bed at my parent’s house”; which are my illness based comments but I’ve also had a lifetime of oversharing horrible things with little consideration to the fact that most people see events as “good” and “bad” as opposed to “life”. I’m a realist, and while I, of course, acknowledge moments might not feel so great, I also know that they give me the perspective required to truly appreciate the happier moments. Having chronic illness only amplifies that acceptance of my situations as “just life”.
There was one thing I would’ve asked her to change (in the hypothetical situation that I was in any position to do so): while women do have the higher stats on chronic illness, there are many men who struggle as well. In a world that tells them they cannot be weak, or sick, or even upset about their circumstances unless it’s in anger. Jackson assumes most of her readers are female (which is probably true), but maybe as chronic illness advocates we should try to reach out to more men as well. My roommate is a guy with Crohn’s disease. He struggles daily to live normally with his illness, and while he’s much more open about it than most, he also rarely lets his illness show through unless he’s completely debilitated by it. There are a lot of days when I want to remind him that he’s strong just as much as anyone else who reads this blog or has chronic illness. We owe it to men with chronic illness to advocate for them and help them become leaders too. Though, Lala does acknowledge male readers, and she doesn’t, by any means, exclude them. To be fair, it’s difficult to include a male perspective when you are not, in fact, male.
At any rate, the book is a quick read, which is a huge bonus when you’ve got limited time due to illness. It’s very worth reading no matter which stage of accepting and/or being empowered by your illness you are. You can learn more about Lala Jackson, check out her blog, or get your book copy here.
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.
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.