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.

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.

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.

Cats, Choices, and Futures

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.

Humanity, Not Machinery.

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.

How It All Started

I thought that for this post I would tell everyone how I got my chronic illness. It was a complicated series of events and is not the happiest of posts. My hope is that it’ll help someone else to avoid a similar situation but also to realize that sometimes there’s nothing you can do; don’t beat yourself up over things you did with the information you had at the time.

In 2013 I left my original university for Kent State University. I left because I was extremely ill mentally, which had caused me to be ill physically. Depression had its claws in me so badly that I had failed to eat properly or do anything other than lay in bed. Needless to say, I had a rough time during the transition to health.

Finally, in the 2014/2015 school year, I was feeling healthy, happy, and like my future was finally unfolding. Spring of 2015, I was accepted into and then as the upcoming secretary of The National Society for Leadership and Success (Sigma Alpha Pi) KSU Chapter. I was going to be attending main campus instead of commuting to the regional campus by my parent’s home. I would finally be taking full time credit hours after a few semesters of time to heal. I was excited and looking at life with a “this is my time” kind of attitude.

So, on February 16th, 2015, as I walked into a restaurant for lunch the first thought I had before walking in to eat was: “Things are finally looking up for me. I can finally live the life I’ve been wanting.”

I was so wrong.

About an hour after eating I became violently ill. I’m talking (sorry for the detail) both ends violently ill. This was the first time since I was two or three, that I had ever vomited. It scared me. I didn’t even know what stomach nausea was until that day. My mom is a nurse and we’d always joked that if I ever threw up, it’d be something really serious. You can imagine my anxiety when I remembered that with my head over a trashcan.

I was shaking and not handling it well. But, unlike my classmates who later reported the same symptoms, mine didn’t last several days. I got sick once. In one moment I was done with what we think was a virus. I went to sleep and was better, with the exception of a stomach ache, and ready to get back to class.

My stomach hurt until that weekend when my parents left for a resort vacation. I have heard that sense of dread is a symptom of illness sometimes, so I think it’s relevant to say I was terrified my parents were going to die on that trip. They’d traveled before, I was used to them doing so. I’d never worried like this. But, I drove them crazy asking what would happen if they did, where would I go, could they please be careful and call me every day….it went on and on.

During the week they were gone I was able to eat, and felt good. I ate all my favorite foods (I’ll admit vegetables were not usually on the menu) and thought my illness was over.

That week, if not for the weeks that followed, would have been one of the worst weeks of my life. A friend broke the news to me in that week, now that they felt they could, that someone I trusted with my life, an incredibly close friend who I’d grown up with but gotten to know well in the last two years, had done something to me that was illegal, hurtful, and betrayed my trust in ways that I never thought they would.

I could have taken legal action, and would have, but by the time I had decided I might want to I was already too sick for it. I told this person’s brother, who assured me he would keep them away from me and asked me to please not pursue it. I agreed, on the condition that the ex-friend not do anything else like what he had done. After a lot of pain and hatred, I did end up moving on from the stress of the whole thing. I did not forget, of course.

I’m convinced the stress from that whole event contributed to everything that happened next. A virus, plus bad eating habits, plus a huge and heartbreaking stressor, were enough to put my body in a place of extreme weakness. I wonder a lot if things would be different if I hadn’t been so hurt by it all.

The next week, I went with my father to his work to do some homework. They have dogs there, which were great for a stressed out college student. I was getting stomach pains similar to what I’d had with the virus and it made me nervous. My dad, and his friend/co-worker, asked me to come out to eat. During the meal I started feeling more and more nauseous.

I left and drove the 15-20 min home while my anxiety spiked and my nausea was intense but was different from the nausea I’d had when I was sick. When I got home, my mom helped me as I lay on the bathroom floor and in my bed, panicking about why all this was happening. I was nauseous but not getting sick, I was shaking, and it was full body torture I wouldn’t have wished on my worst enemy.

That torture continued for over a year until I found CBD oil (get to that later). For four months I couldn’t eat more than goldfish crackers without feeling sick, and was bed ridden except to make trips to the doctors. My doc did so many tests, she was certain there was nothing wrong with me, that it was anxiety. One day in her office, while I was waiting for an appointment, I started feeling bad enough that I was afraid I’d faint. I went to the desk, shaking and probably looking pretty frail at that point, and asked for water. The receptionist promptly called a nurse.

They sat me in a wheelchair, took my vitals, and told me my blood pressure was way too high. As concerned (and seemingly anxious about whether I was contagious) onlookers watched, I was rolled away to lay down in her office. Nurses checked on me but they left me in the room alone to suffer, with no medicine or fluids, for over an hour.

My doc finally came in, and continued to brush off how I felt, even given my high BP. I told her I would rather die than live like this another moment. She gave me a shot of Zofran, called my dad, and sent us to the nearby ER.

When we got there, we found out she forgot to call the ER ahead of us, so the intake nurse wasn’t the kindest. She was rude and told me I didn’t need to be there, while I fought back tears of desperation, and my dad fought back his fury at her lack of empathy.

I was finally seen, tests were run, and I was sent home with heavy antibiotics (for what they said was a bladder infection) and a script for Zofran for my nausea.

I ended up taking two rounds of antibiotics before docs were satisfied with my bacteria count, and I took Zofran as needed for a while. It helped, but also gave me different kinds of nausea and malaise. We assumed that was a side effect.

I made another trip to the ER after telling my parents that my nausea and pain were unbearable. They couldn’t figure out what was wrong either. They sent me home with a GI cocktail which definitely made me feel better for the first time in months. I was so relieved I asked if I could get a prescription. Of course I couldn’t. That’d be too easy.

I returned to my doctor. My mother is a cardiology nurse, and worked in the Cleveland Clinic Foundation’s Main Campus cath. lab for 11 years. She knows how to listen to heart beats. Growing up, she’d always hurt an odd, but regular rhythm, to my heart beat every time I was sick. She told my doctor about this and said she hears it more and more often now. She asked if we should get a referral to cardiology, since my doctor wasn’t getting any answers (I underwent 51 tests that year). My doctor just sent me to a social worker to “rule out” psychosomatic symptoms, and continued me on Zofran.

The social worker ruled out psychosomatic symptoms, and for those of you who are familiar with it, Zofran is black labeled for heart problems. In the cardiology department it is avoided at all costs, and should never be given to someone with a heart problem or irregularity. My doc still refused to send me to cardiology. So my mother and I did it ourselves.

I’m very glad I did because once school started, after other tests, I underwent a cardiac catheterization and was diagnosed with Inappropriate Sinus Tachycardia. THANK YOU CCF CARDIOLOGY FOR GIVING ME VINDICATION. After being told over and over that my problem was all anxiety, I had a physical diagnosis.

Now, I was switched to a doctor that specialized in these things and he disagreed with the exact diagnosis. He told me I didn’t really fit in anywhere. So currently my diagnosis is “tachycardia” but that doesn’t quite fit either. I’m in the medical no-man’s-land and there’s no treatment. I did get off that horrible Zofran though.

I quickly left my doctor after realizing the possibility that she caused my condition in the first place by ignoring my mother and I and giving me Zofran anyway (my mother had warned her, long before it was administered, about my heart beats). She hadn’t treated me like a knowledgeable individual who knew my own body. I was just a dumb patient who couldn’t possibly know the difference between anxiety and a physical illness. This infuriates me to this day, and I urge everyone to get second opinions if they don’t feel quite right about something their doctor is doing. Also realize they do have more training than you, so if multiple docs from more than one specialty tell you to do something, you may have to just accept it.

I still had stomach problems, even after I worked hard to recuperate and be able to walk longer distances. I was later diagnosed with gastroparesis, and got that managed through diet as well.

In 2016, I met my current roommate and friend in the dorms. He told me about a sublingual substance I could try called CBD oil. It worked! I could eat! I didn’t feel nauseous after eating or during the day. I could walk longer distances and didn’t struggle with my heart problem as much. Because of him, I have a life. CBD oil is amazing and I’m so overjoyed it’s legal in my state. I don’t know what I would do without it.

That is my illness story. I’m not sure how I managed it, but I survived a time that I’d consider sheer torture. I was malnourished, and mentally drained. I was tested over and over and put through every crappy moment of doctors doubting my own certainty about my body. I was lucky. A lot of people have it worse. But, we all need to stick together no matter how severe our illnesses. The medical community here is full of caring doctors and nurses, but the system is crap. It sets everyone up for failure. For large bills and no answers. For fear and disappointment because you need the “right symptoms” to see a new doctor without it costing you the full amount without insurance. We are all just trying to feel better, to survive, to function, to not struggle so much that we consider suicide.

If you’re someone struggling with an illness, whether it’s depression, another mental illness, a physical illness you have a diagnosis for, or one you don’t, and you’re seriously thinking of suicide, please seek help. Sometimes science just doesn’t have the answers yet, but there are people out there trying to help. People who haven’t even met you, but still care about you. You’re just as important as anyone else, and there may be a treatment or a cure coming. I was so certain that in any moment I could end my life and that torture, but I’m glad I didn’t. I wouldn’t have met my best friend, or made so many wonderful memories. I would have hurt my family and friends immensely, and I don’t ever want to cause them pain.

Sometimes we need help, to stay hanging on. If you need it, go get it. You do not have to deal with things alone.

Insomnia, Wine, and Free Time

I can’t imagine many minor problems worse than acute insomnia. I was up until at least 2:30-3:00 every night this week (waking up at 6:30-7:00) until Thursday when I finally got some sleep. I was desperate enough for sleep that I started wondering if sleeping pills would be best. They’re not. I don’t have chronic insomnia and can manage to fall asleep pretty well any other time.

It made me think about the level of stress in my life. I’ve been putting a lot of pressure on myself to be good at everything I try (impossible by the way). Without going into too much detail, I was feeling a lot like I wasn’t doing well. On top of that, I’ve been trying to balance a schedule that doesn’t really work well. I’ve changed a few things so it should get better but now I find myself laying on my roommate’s parent’s basement couch, a little buzzed while I drink out of a bottle of wine, and wondering why the hell I care so much.

The amount I care probably won’t change, but I can change what I do when it’s time to stop caring. I can put my failed homework down and realize it’s time to go to tutoring. I can figure out what’s keeping me up at night and how to stop it. I can ask my coworkers for help and understanding when my illness isn’t the only obstacle in my life. I can just take a deep breath, realize I can’t change something, and just let it be what it is.

It’s strange that most of the time, Spoonies learn to do this relatively quickly because they have to. “Oh, you have a heart condition with no treatment and you’ll just have to live with it”, “You’ll have to go to chemo”, “You will deal with infertility, crippling pelvic pain each month, and still feel a biological urge to have children which could be potentially fatal for you”….. there are so many illnesses, so many symptoms to cope with, and a flurry of side effects from treatments. You just end up doing it all. You look at your condition, and (with the exception of those angry or depressed moments when it’s gotten too hard) just accept that you can’t change the situation but you can do something to affect your situation in your favor. Whether that’s doing your treatment, or just breathing and enjoying a view out of the window.

My current situation improvement is to stress less about the homework I just utterly failed, and send an email to the professor for help. Then I got out my wine and played darts. I got my first bullseye (my featured photo)!

There’s a lot of ways to take care of yourself when you have chronic illness. One of the big ones is to just stop trying so hard. Sometimes life smacks you down, just get up and try again. Don’t quit anything unless it’s really hurting you, but just trying (not destroying yourself trying to be perfect) is a great way to get a lot done without going crazy or getting sicker in the process.

First Week of Classes, First Post

This past week was my first week of classes of my second semester of my 8th year of college. Yes. 8th. I’m a transfer student, super super senior, with two health conditions that make it hard to handle more than part time schooling.

I’m starting this blog to accompany my YouTube channel about chronic illness (links posted later), but also to give me a place to write and express thoughts I have through the week. Mostly I want to show people what it’s like to live with my kind of illness and still try to live a busy life. My blog title is a play off of “lock, stock, and barrel” and the word “spoonies” which is what people in the chronic illness community have named themselves. So, as the title suggests, I’ll talk about a bit of everything, especially spoonie life.

My first week was the first week since I got sick that I’ve taken 9 credit hours worth of classes, had a semblance of a social life, worked 28 hrs/week, and actually slept an acceptable amount of hours (or attempted to). A feat I’m realizing is more difficult than I thought.

Most college students are stressed in general, but when you throw chronic illness in the mix it’s a whole new plain of existence. My illness isn’t even that bad, so if you’re reading this and you find it difficult to even go to school with no work, or even less, I’d say well done on whatever goals you’ve attempted. Whether you’ve achieved them or not, it’s finding the energy to try that’s the hard part.

I’ve had to put myself in a “just do it” mindset, which honestly feels like it suits spoonies better than athletes. When you’re exhausted, your condition’s acting up, and you haven’t had a real meal in at least 18 hours, you’re officially a zombie. I moved through my week full speed ahead, no stops, no time to think about it. Problems come up and I tackle them, my to-do list edited every 10 minutes with new tasks, or a rearrangement. But, I made it through, and only missed one class, and everything’s good, right?

Nope. I forgot the biggest rule to being a spoonie, the rule that’s quite literally part of the reason we’re called that: If you use spoons you don’t have, you’re borrowing them from days that haven’t happened yet.

I’ve run out of spoons.

Crap.

As I finish this post, I’m caught up in chest pain, stomach pain, and difficulty breathing from both of my conditions coming together to make the perfect “here’s exactly what you asked for” slap in the face. It’s 4:30 AM, and my body is both exhausted and deciding it must keep me awake with symptoms. I know my body. I know that I won’t be able to make it through getting dressed in the morning, let alone going to class and work. My body has officially benched me from the “just do it” triathlon.

I will end up missing the most important day of my week because I pushed myself too hard last week. It’s important to remember that it’s okay to push your own limits, but as a spoonie, those limits are a little harsher and they like to push back. I wish I had a less cynical message for this first post but this is going to have to be one of the ones that’s a message to people who don’t have to balance illness with the rest of life. A message that “just do it” is great for motivation, but no matter how motivated your friend, coworker, or family member may be, sometimes their body is just done. The silver lining to this is that I have a good support system. My university, and therefore my job with the help of an extremely understanding supervisor, has accessibility services which allows me to rest when needed without penalty.

Not every spoonie is so lucky. I’m reminded that it’s a privilege to even rest today as I let my body recover.

If you’re a spoonie, remember that trying is 90% of the battle, and limits do exist. We can smash through them sometimes but usually it takes patience, and a lot of careful planning, but it can be done.

If you’re reading this without illness, then remember to have compassion and understanding if someone you know is dealing with illness. Every day is a new challenge and each mistake (we’re human, they will happen) can cost us a day or a desired outcome.

This post is much longer than I planned; I’m not expecting many to reach this point. If you have, thanks for reading, and I hope you’re happy you did. My past week has been full of a lot of unexpected challenges, so maybe it’s good to end with a blog post I didn’t expect to be so long. Here’s to hoping this upcoming week goes more as planned.