Tag: Chronic Illness

Beyond Powerful (book review)

~ Olivia Hill ~ Leave a comment

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

~ Olivia Hill ~ Leave a comment

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

~ Olivia Hill ~ Leave a comment

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

~ Olivia Hill ~ Leave a comment

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.

~ Olivia Hill ~ Leave a comment

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

~ Olivia Hill ~ Leave a comment

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.

Cats, Choices, and Futures

~ Olivia Hill ~ Leave a comment

This past Tuesday my roommate and I adopted a cat. He was the first and only cat we looked at. He’s also the sweetest cat as far as cats go (if you’ve owned a cat you know what I mean). He’s playful and curious and snuggly and independent. He also gives me some much needed emotional support when I’m stressed, which couldn’t have come at a better time.

Recently I’ve been rethinking my future. I had dreams of going into research, of managing my own lab, of being the busy, perfectionist, workaholic I can be but not always am. But now, I’ve dropped my maths minor, and am considering going in a completely different direction with my life. I tend to flipflop between doing nothing and doing everything (there’s probably a psychological diagnosis there somewhere). Lately school has been stressful; I’ve been in it longer than I can personally handle. Going through the red tape of learning things I most likely would have to relearn in the way whatever my future workplace prefered, just for a piece of paper that says I can follow directions even if I think they’re pointless, or if I don’t enjoy doing whatever it is I’m told to do.

I’ve been tired and unable to work up the interest and passion required for grad school. I’m a work-9-to-5 and have-homework-only-sometimes kind of girl. I want a life with hobbies and family and pets. I don’t want my whole life to be locked into one thing. I’m a Jane of all trades and a little bit like Carly’s brother from iCarly: I’ve tried a bit of everything.

He ends up being an artist. I really miss the arts. Theater was magical, dance was moving and calming, writing is like building a river of words, and singing has the ability to make my shower the land of whatever emotion I damn well please at the time. Maybe this is because the arts let you be a Jack-of-all-trades. It doesn’t scold you for taking an interest in multiple areas.

My brain isn’t unique in this aspect, but I have a tendency to hobby/interest jump. I’ll try something, enjoy it, then jump to something else. I’ve done it since I was very little and figured out this is probably due to the fact that I don’t like feeling tied down to a specific way of life. My way of living is less important (as long as I’m healthy and happy) than the people I live that life with. If I’m stuck in a certain way of living, I might not be able to be there for the people I care about or do something fun or important when surprises pop up.

Chronic illness has also closed some doors for me simply because I don’t have the energy to deal with a lot of stress or extra work. It’s not that I’m not a hard worker, it’s that I’ll put in the work and burn myself out later. The more I think about it the more I realize I don’t really want to attend grad school. I want to try something I can change easily. I want to write. I want to sew/knit. I want to teach dance. I want to do a job that centers around organization. I want to have the freedom to be who I am with the interests I have at the time.

This is stressful because society, my illness, and my survival needs all dictate I choose something and stick with it so I can rise on the economic ladder and support myself. I’m not sure I’m going to do that.

As I snuggle with my cat, and try to study Russian for my class, I’m thinking about what type of future would be best for me. I know I’m keeping my grad school doors open, because maybe when I look at the places I could go I’ll be more passionate. However, I also could do a number of other less stressful things that I would be just as happy with.

For non-Spoonies, this kind of problem is just an issue of what interests you and maybe what the people in your life want and what will help you survive. For Spoonies, we have an added issue: will the job I want be too difficult or impossible with my particular health concerns?

My heart condition makes fast paced or physical work difficult. My gastro condition can compound that by robbing me of proper nutrition. Stress causes both to become exponentially worse. It’s a lot to consider.

Here’s the nice part: life can change. We can get new jobs, go back to school, try something new, move somewhere new. So, for other Spoonies or people without chronic illness, maybe this will help you as well: Do what makes you the most happy. If you find out it’s not for you, then take a different road. Our lives don’t ever have to be like anything done before. Each person is unique, so are our lives.

Friendships and Understanding

~ Olivia Hill ~ Leave a comment

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.

Humanity, Not Machinery.

~ Olivia Hill ~ Leave a comment

As a college student, I’m faced, every day, with the pressure to be perfect. I’ve talked about this before. As a person with chronic illness, I am simultaneously told by society (particularly American society) that I need to be the same as someone without an illness to overcome, and by medical personnel and other Spoonies that I need to rest and realize that I am human.

Being human, however, isn’t desired. Our society wants machines: be perfect, feel only what we say to feel, push forward.

Maybe that’s what our country lacks. We’re expecting machine-like qualities from humans. Machines are cold, unfeeling, and can easily be used to harm. If you hit someone with a car, the car doesn’t feel bad, the human does. If you fail to follow safety regulations and someone is hurt by a machine, the machine feels nothing, the human feels regret and guilt. If you shoot someone with a gun, the gun doesn’t know the difference, but the human shooting it knows they’re hurting someone else.

We are not machines. We are humans. When you try to block out humanity for perfection you lose the entire beauty of humanity. It’s beautiful because it’s imperfect. It’s beautiful because in spite of its imperfections it creates art, helps others, solves mathematical theorems….. humanity is not perfect. Humanity is messy.

Humanity is feeling a million conflicting things at once. Humanity is feeling apathy towards one person and loving another. Humanity is working painstakingly on a project, only to destroy it later. Humanity is crying over rejection while simultaneously checking out someone attractive. Humanity is doing your best and still failing. Humanity is getting a degree and then getting a job in a different field. Humanity is both hating and loving someone at the same time. Humanity is wanting to be alone but also not wanting to be. Humanity is wanting to sleep but not being able to. Humanity is uncertain. Humanity is calmness. Humanity is anger. Humanity is sheer panic. Humanity is knowing everything will work out just fine. Humanity is the acceptance of imperfection and the acceptance of our individuality.

What happens if you tell a young man, that his humanity is flawed? If you tell him every day that his feelings (except anger, you know… for sports) make him weak. If you tell him that he’s not allowed to fail in any way, that he has to have friends, enjoy only certain things, get all the girls, dislike only certain things, be anything other than human. What happens when that same boy is so privileged in our society that he usually gets what he wants either through his own privilege or his parent’s? What happens when that same boy comes across a moment in his life where his imperfections show through and he starts to feel something other than anger, like hurt?

Well, he fixes it the way he’s been told to. He stops, and erases his humanity. He kills the thing that causes him to feel empathy, towards himself and towards others. He kills his heart. He kills himself internally. Then he steps forward, weapon in hand, to show the world how well he did at killing his own humanity…

… by killing every classmate and teacher he can. By killing every theater-goer. By killing every cheering concert fan. By killing someone’s baby, someone’s best friend, someone’s uncle, brother, sister, mother, surgeon, teacher, crossing guard… by killing someone’s everything.

We have completely failed young kids, if we enact gun laws but fail to fix the systemic problem as well. Humanity is knowing there’s a short term solution and a long term (this also goes for systemic racial oppression). We cannot change the systemic destruction of an individual’s humanity in one night. But, we can put protections in place to make it harder for a young man, who has everything to prove and nothing to lose, to get ahold of a gun. Then, we can focus on the aspect that includes mental illness.

As Spoonies, we know well what it’s like to face the realities of humanity. Many of us also know what it’s like to face those realities with mental illness. However, mental illness is never an excuse to kill. The men who have stood up and decided that their pride, their pain, their lives, were more important than the lives of others, deserve to be punished for it. But as a society we also need to stop this idiotic bickering over which problem is really to blame.

Humanity is full of multiple problems acting in tandem. It’s looking at a situation like this and realizing it’s a gun problem AND a mental health problem. It’s a problem at home AND a problem with society as a whole. It’s a problem with failure to report AND with failure to realize that reporting isn’t as simple as the president makes it sound.

Humanity works in shades of greys. It rarely looks clean cut. It’s messy and difficult and filled with regret and pain but also of beauty. It’s filled with bitter arguments with cruel words, and then tears of remorse and embraces of forgiveness. It’s filled with acceptance of other’s imperfections even if they don’t accept your own. It’s filled with groaning because you have to wake up for work/school, while also marveling at the beauty of your sleeping child, the sunrise, your cute pet, or significant other. It’s waking up realizing, and possibly feeling disgust at, the fact that your loved one has shit the bed because of their illness, but lovingly helping them anyway. It’s long nights in hospital rooms, with occasional small moments of joy at a new visitor or a small amount of precious time gained. It’s dying a little inside every day watching a patient suffer, while you step forward to make their lives a bit easier instead of running away from that pain. It’s seeing the anxiety in the eyes of your students, and postponing an exam, or letting class out early. It’s taking the bad with the good and doing your best.

Humanity is all we have. Humanity gives us compassion. It gives us love, which can both create the highest euphoria and the greatest pain. If we could stop, for one moment and embrace humanity instead of trying to shut it out….maybe our world wouldn’t be so cold. It would still have pain, there’s no erasing that. But, it would be less cold and grey metal, and more warmth and color. It would be beautiful and exciting instead of dismal and soul crushing. Accepting our humanity lets us accept our failures with the ability to stand up and try again instead of giving up with “I’m no good at this”.

I know that my efforts to embrace my humanity will never be perfect. That’s the point. I will do my best to face the pain in my world. I will do my best to look at other’s pain and show them I care instead of turning away because it makes me uncomfortable. I will do my best to always have empathy. I will do my best. That’s all we can do.

Embrace humanity and stop expecting perfection from imperfect humans. We are not machines.