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, Tattoos, and Self Care

There’s a corresponding video to this blog post here.

This week I had to miss two days of work for my chronic heart condition. Currently I’m still trying to figure out what is causing it to flair because I’ve been sleeping most of the time. The sleep doesn’t seem to be helping.

Thursday was our first day of classes, and while waiting for lunch before work I almost passed out. Not a fun time. Friday I had to get some minor fillings done (didn’t need novocaine) and was still having some pretty bad symptoms so I missed work again.

The hard part about having an invisible illness is that, sometimes, taking care of myself doesn’t necessarily mean laying in bed. It means doing something enjoyable, not thinking about my jobs (I’m about to start a 3rd one), not worrying about producing content, being in good company whether that’s my best friend or my pets or family, and just lowering my stress so my heart condition doesn’t flare.

Unfortunately, not many people understand this. A lot of superiors don’t have empathy to a situation where you aren’t bed ridden, and even when they do it’s still something I worry about just from past experience.

Ultimately though, my health comes first. I will never force myself to work if I know it isn’t healthy. I don’t want to ruin my health just for a day of work; especially since missing one day is better than missing a week because I didn’t rest and got worse.

Having a minor chronic illness that lets me live a relatively normal life, and having to trade a minor inconvenience like someone’s lack of understanding, I can easily and happily live with that. But I am constantly aware of the situation and always want to help raise awareness. If you’re in a position to advocate for someone with any kind of illness, well… it’s always appreciated.

The attached photo is my newest tattoo which I talk about in the video link at the top of the page. Thanks for reading!

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.

Love, Gratefulness, and Small Moments

Every so often I re-realize something I already knew, with a deeper amount of understanding. Recently it was: No matter how difficult things get, there will always be small moments. There’s a meditation style (if I could remember the name of it or the originator I’d tell you) which allows a person awareness of their surroundings in an observant way. One of the best things to “observe” when dealing with chronic illness/pain is that it’s constantly changing. Nausea and pain never stay at the exact same level forever. They ebb and flow, feeling more intense then less intense. It was easy to focus on the lessening of my pain and that it would be gone soon; instead of focusing on how intense my pain or nausea was, I focused on the changes in between.

This was the form of meditation I used when I was first sick and therefore nauseous and in pain 24/7. I’m pretty hypersensitive, so I was never able to block out my surroundings. So, instead, I would focus on them over my own body. I would feel how sitting felt, the floor, the air, any sounds or smells, all of these things got noticed at once. The catch is to not have any judgements about the stimuli felt. If the air feels hot, that’s okay, but if you think about how much you wish it could cool off, that’s not (except everything is okay because it’s meditation, not bootcamp). It’s always helped me so much because it allowed me to stay in the moment without focusing on something that could be affected by my condition, such as my breathing. No more trying to meditate and getting stopped by lack of deep breathing or feeling like there was a rock jammed in my diaphragm.

The biggest way this helped, was it also taught me and helped me to appreciate small moments: the beautiful way hot tea steams, the way my mom’s fluffy dog snuggles up to me almost constantly when I visit, the warmth of a favorite hat, the company of a friend, or the beauty of a row of twinkle lights. Those moments are peaceful for me and give me an opportunity to be grateful for what I have, and to stay in the moment and enjoy it.

I’ve had a hard time in my personal life lately. What it’s made me even more sure of is how important it is for me to be grateful and content with what’s going on now. I’m trying to do that more and more. Are there things I want in my life? Yes, of course! But I’ve learned that if I focus too hard on the things I want, I miss out on the things I’m lucky to have. I know this is what everyone means when they say “count your blessings,” but as I stared at the beautiful twinkle lights in my living room, it was so calming, even when I was having one of the most stressful weeks in a while, that I couldn’t help but remember how lucky I am.

Valentine’s Day is coming up this week. I know it can be a difficult day for some people, especially if your illness interferes with not just plans, but in finding someone to even think of being a valentine. I know it’s going to be a lonely day for me as well but that’s okay. I’m going to challenge myself to be grateful AND show love. You do not have to be seeing someone romantically to show your gratitude for them and Wednesday will be the perfect chance.

If you don’t like to do this, or if time is limited (which is my case), it’s also a good time to treat yourself to some pampering and remember that you deal with a lot. Everyone has problems whether it’s chronic illness or not, and everyone likes to know they’ve worked hard and that someone cares. Show yourself that gratitude and caring!

My tradition has always been to buy myself a box of chocolates, take a hot bath, and just relax and watch Netflix and thank myself for getting through all of the challenges of the past year. I’ve also occasionally gotten a friend something when they’ve acted as a big support for me. For others, it might just be letting themselves think of all the ways they’ve stayed strong in tough times, or making themselves a cup of tea, or going out with family to a place that they enjoy, or even just sitting with someone they care about and enjoying that person’s company in the moment.

The phrase “self-care” gets tossed around a lot in the Spoonies world and all over the internet in general. I personally think sometimes it goes to far, because well intentioned people could take it as “ignore someone else’s needs for your own”. In my opinion (and it could just be me personally), true self care is the act of showing yourself gratitude, of lowering your stress levels, but of also helping others and being grateful to them. Humbling experiences, the kind when I ignore something I want or possibly need (which can wait… I try not to ignore important needs) to help someone else. That’s something that makes me feel calmer, useful, and in a position to look at my life and be grateful.

Whatever you’re doing this week, on Valentines day or any other day, it might help to think about what you have instead of what you don’t. I know it’s helped me a lot in times when my wants were creating more sadness than motivation. Whether you’re a Spoonie or not, I hope your week is filled with less pain and discomfort and more time enjoying what you love.