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.


Friendships and Understanding

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.


Love, Gratefulness, and Small Moments

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

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

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

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

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

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

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

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

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


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. I had left my job at the end of January to focus on school. One of my former managers broke the news to me in that week, now that 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, amd 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 if 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 speciality 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.

Last year, 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.


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.