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.

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.

Friendships and Understanding

As I get older I realize more and more that there are big differences between the friends I had when I was younger and the friends I have now. These aren’t bad things, just things. I’m also aware that everyone realizes this at some point and it’s probably pretty well known to anyone who has kept some childhood friends in their lives. The difference is this: I don’t usually have to explain my actions or feelings to childhood friends.

These are friends who watched me grow. They watched the events in my life change me and create my perspectives. They know which things broke my heart. They know which things brought me joy. Some childhood friends know me, probably, better than I know myself. They know which weaknesses I have that continue to kick me in the ass and they don’t make me feel horrible about them.

When I first got sick, I didn’t know what was going to happen. Was I going to get better? Would I get worse? Would I get worse to a point where no one could help and it would kill me? The uncertainty and the mystery of what I had (along with the fact that my doctor was ignoring some pretty obvious clues) meant I reached out to those friends. I called and texted and facebooked, and met with people I hadn’t seen in a while.

My childhood friends are the ones who flew out of the woodwork to help, in whatever way they could. They helped in ways they knew I could handle; hypersensitivity means I can only handle so much excitement or attention at one time before I burn out. They’ve seen me during some of the worst and best times of my life. They also know the majority of my inside jokes.

This isn’t news to anyone. That’s what friends do. My non-childhood friends are great too, but they see me from the perspective of my explanations of my childhood. They weren’t there to see the things about myself that I didn’t see. They don’t know all the different ways I’ve expressed myself over the years or how I’ve changed.

Thinking about all of this, I think about other Spoonies as well. In my case, I don’t have many close childhood friends left. There are that wonderful few who have hung on through all my mood swings and withdrawals from general socializing. I’m lucky. Many Spoonies have spent so much of their lives in hospital that they never had an opportunity to make those friends, or those friends have left because let’s face it, being friends with and supporting a Spoonie can be difficult.

This is something every Spoonie is acutely aware of. We know we can be burdens. We know it gets tiring dealing with an exhausted, sometimes depressed person. Depending on the illness, a friend’s job can be difficult. Here’s the thing though: If you are not a fan of my life imagine how I feel.

I follow quite a few Spoonies on social media as well as having some as friends in my “real life” (the internet is real life, if your only friends are online they’re still real). I have seen multiple rants about how hard it is to listen to “you’re so depressing all the time”, “why can you just handle it?”, ” I know your life is hard, and you’re hurting, but I can’t deal with this right now.”

These most likely well intentioned, tired friends/family members probably don’t mean to hurt us. They probably just want to be honest about how they’re feeling. This is fair. This is normal. As a friend I owe it in return to also be understanding of their situation.

Recently in my life people have been very understanding. They’ve been patient. They’ve given me the time, love, and consideration I need to deal with my illness while in school and working. This blog is coming from my want to express the frustration of others as well as “past me”.

We are people. We are exhausted. We are not exaggerating our symptoms. Life for many Spoonies can be complete and utter torture. In fact, a sentiment I hear often which might be shocking to many non-Spoonies, is “I’m only suffering through because it would break my friends and family’s hearts if I died.”

If you’re part of a Spoonies support system, you’re probably very important to them. They’re most likely trying so hard because you’re in their life. If you’re a Spoonie, it might be hard to hear frank statements from your friends and family but they deserve our understanding too.

Our world lately seems like there’s so much arguing and us vs. thems that it can be overwhelming, to say the least. If we stick together, even in small ways, if we have more understanding for the people around us the way we want to be understood… maybe we’ll have more friendships like childhood friendships and less lonely people. A small moment of understanding towards anyone, Spoonie or not, can go a long way. ⏺️

Note: This blog isn’t my best. It was a bit all over the place. I’m having a Spoonie day with low spoons.