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.
New blog/vlog post on YouTube
Category: Uncategorized
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.
Projects, New YT Video, and the Future
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:
- Short stories, poetry, and more blog posts about life.
- Links to YouTube videos. I just posted one today, you can view it here. Please like and subscribe to support my channel, because I enjoy encouragement. I’ll be trying to put out a lot of diverse content in the future.
- Possibly some stories from others, if they’d like to share.
- Media reviews like books, movies, and games.
If you have a story you want to share with me, please email lockstockandspoonies@gmail.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.
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.
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.
New Youtube Channel!
I’ve just posted the first video to my YouTube Channel. Check it out here and subscribe if you’re interested!
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.
Camels, Dolphins, and Exhaustion
It’s taken me a while to write a new post, but I had a lot going on as well as some problems with my illnesses. Here’s the update:
I missed a week of school, before the official week of spring break, to go to Los Cabos San Lucas for spring break. I went to a resort with my family and just spent the time relaxing. This trip was significant because it was a vacation I’d been waiting to go on since 2015, when I got too sick to go and had to let my parents go without me.
I was pretty nervous about going, first for the plane ride, and second for being out of the country. The plane trip made me nervous because I would be confined to a small space and if my symptoms flared there would be no way to help me until we landed. The next concern was that I would have a serious problem while in Mexico, which wouldn’t be too bad given we’d have the funds for adequate medical care…. except…. my condition isn’t directly known. It doesn’t have a true diagnosis and lands in the grey area of cardiovascular no-man’s-land. This makes it difficult to treat without a language barrier, let alone when I have no official term to describe what’s wrong with me.
Well, I put my worries away and went on the trip. It was amazing! I rode a camel, which we were shown are given free, non-fenced, room to roam, and learned about survival methods in the desert. I was shocked I was able to stand the heat, and found out there’s something to be said for clothing designed for a sunny climate. My dad let me borrow a big, UV reflective button down that kept me from overheating or getting sun poisoning. I learned about desert plants and ate a wonderful meal, where our guide Augusto taught us all about making tortillas the traditional way and gave us four kinds of tequila to try (I was having some health problems so drinking wasn’t as feasible for me).
I also got to ride, dance with, and kiss a dolphin, which was an incredible experience not available in the US. Those are memories I’ll never forget.
The trip did have some downsides: I was feeling ill and exhausted for a good portion if it. My stomach and heart giving me problems. I had to worry about things that most vacationers don’t have to think about quite so intensely: am I drinking enough water? Did I reapply sunblock on time? Do I have the energy to be out or should I go to bed? Is this food going to cause my conditions to flare? Is my exhaustion from traveling, or did I get a virus or is something else wrong? All of these concerns had a basis in whether I was going to push my heart or GI system to the edge and need medical care, or at the very least ruin a nice vacation moment for my family by needing to cut it short.
Luckily, I made it back to the states with only some mild discomfort and went back to work (sort of…). I have been experiencing a level of exhaustion I haven’t experienced in quite some time. My school work is stressful and to add to it I’m so exhausted I usually sleep instead of completing it. Or, I wake up and have housework to finish which makes me too tired to study. Needless to say, chronic illness is a vicious cycle. As any Spoonie will tell you, borrowing spoons is tricky work. My spoon borrowing is beyond out of control and it’s going to take a lot of work to get it in check.
Vacations for Spoonies are sometimes more tiring and stressful than relaxing. But I don’t regret my experience and am really glad I was able to go. In my life lately I’ve been trying to push myself more, which, I’ll admit has the effect of making my stress a lot higher and may not be the wisest decision. Life isn’t always easy to figure out. What seems to make perfect sense to one person is incredibly opaque to another. When you add emotions, surprises, and the responses and actions of others, life becomes a seriously frustrating puzzle and borrowing spoons to handle it is even more frustrating.
My puzzle right now is a very tiring one, and I may take longer to post updates. I’ll be doing my best though, and I hope you all enjoy reading about my sometimes wild, sometimes boring and repetitive life.
Lock, Stock, and Spoonies™ 