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!

Keeping Up With the News, and a Bucket List

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:

  • Learn to ice-skate, at least well enough to not have to think about it too much.
  • Get my own bow and crossbow and practice archery more (get a bullseye 90% of the time)
  • Learn to use, clean, and fire a handgun proficiently for sport in a range. (I’ve done this a bit with a marksmanship class, but I’d like to go for sharpshooter status)… (I am pro gun for sport or appropriate self defense, but I feel regular background and mental health checks should be required)
  • Learn to crochet
  • Learn to make my own clothes
  • Learn to tailor clothes
  • Learn at least two more languages fluently (I have had introductory lessons on ASL, Russian, Spanish, Japanese, and French, and would like to learn more at that level but I do want to be fluent in 3 languages)
  • Learn to paint and draw at a higher level, and sell a painting
  • Go on a haunted/historic tour of America
  • Run my own Etsy store
  • Have kids
  • Get married
  • See a panda in real life
  • Gallop on a horse again
  • Visit Japan
  • Visit New Zealand
  • Write a book
  • Visit the grand canyon
  • Do a flip
  • Do an aerial
  • Do a butterfly twist
  • Drink Armagnac
  • Dress up in clothing for the era of a play/show I’m seeing (a plan made my one of my close friends that sounds like so much fun)
  • Have my own greenhouse
  • Choreograph a dance that I feel comfortable sharing with people
  • Learn to play guitar relatively well
  • Visit the Harry Potter part of Universal Studios
  • Go on a roadtrip with my best friend and just go wherever we want without too much planning (this needs more funds than I have at the moment)
  • Have a job that pays enough where I don’t have to worry about whether I have enough money to pay bills if I have a surprise expense
  • Learn how to dance en pointe
  • Learn to hold my breath for 5 minutes (I’m told my grandfather, who was a navy Frogman, could do this)
  • Get my hair dyed blonde
  • Learn to skateboard
  • Learn to snowboard
  • Write my own song
  • Own my own piano
  • Learn to play the cello
  • Get flexible enough to do the splits both ways

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.

Beyond Powerful (book review)

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.

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.