Tag: Chronic Illness

New Year, Same Me

~ Olivia Hill ~ 1 Comment

I don’t like New Years.

This isn’t because I hate parties, though, if asked to choose between a solitary activity and a party I’d probably choose the former about 85% of the time. No, it’s because I’m not a fan of the idea that you have to wait a year, for a magical day, to change anything about yourself. If that’s your thing, then you do you, but it’s not for me.

1. This opens up the next year for a lot of feelings of failure. You didn’t lose weight? Failed. You didn’t stop drinking? Failed. It’s this barrage of mental “you suck”s and then you have this expectation that the reset button is January 1st. Which for some, is 11 months away.

2. This leaves the idea that growth, learning, and success don’t also require mistakes.

3. It causes people to give up during a process that takes time, second (and third, fourth, 5th and so on…) chances, and a lot of getting back up and trying again with the same faith in yourself that you started with.

So, yep, I absolutely hate New Years. To me, these things should be tossed on their head and it should be done differently. For me, NYE is just another night. NYD is just another day. In fact, we spent today hanging out just like any other. I didn’t clean, I didn’t write resolutions, I didn’t pledge my year to health, or a skill.

I did buy some new instruments because going forward I would like to do more music related things. This thought isn’t stuck in the new year, it was with the new day. A new year’s resolution is like mud on your shoe. It starts fresh and thick and as you walk it rubs off in the grass, then eventually you forget it. But a new day’s thought, one that is less tied to time and more tied to you, is like a pet that walks with you and keeps you company wherever you go.

I want my goals to stay, not fade away as the year goes on. So I take every new day as a new chance. A new chance to drink more water than I did yesterday. A new chance to exercise. A new chance to clean, work on a skill, or change a part of me that needs work. But if I fail, I don’t think “time to quit until next year”, I just think: the next second, minute, hour, or day, are perfectly new and fresh opportunities.

No one is transformed when the clock strikes midnight. No one becomes someone new. The phrase “new year, new me” ignores the person you are. It ignores the good things about you. It ignores the process of improving, and the cycle of failure that naturally comes with it. Every day is a new chance to grow. Take the mistakes and embrace them, but don’t let them stop you from trying. Don’t forget the person you are, and embrace it. You don’t throw you away, you just add on better things. Don’t wait to make positive change, just make a new choice in the next second, not the next year.

There’s a lot of superstition surrounding new years: don’t go into the new year with anything you don’t want or you’ll have it the whole year. Well, breathe easy, because it doesn’t matter. Chronic illness teaches a lot of people that. The day changes constantly for spoonies. One minute can be wonderful and the next can be agonizing. If I quit every second I couldn’t breathe, or I was in pain, or felt nauseous, I’d never do anything.

My successes grew from a lot of moments spent on the floor. A lot of mental and physical illness moments. A lot of failures. I’ve had days that were going great, workouts happened, meals were cooked, the house was cleaned, and then the very next day it was destroyed. Those 2nd days sometimes involve me gasping for air, or wanting to jump out of my body because of some constant nagging pain, or struggling to do anything at all.

Sometimes, those 2nd days came after a doctor’s visit that destroyed my hopes. A visit that felt like my symptoms were so horrible, that I was struggling so hard, but that the doctors weren’t listening. Some visits involved waiting for tests to come back, and finding out still there were no answers.

One year, there were answers. After so many months of struggling, of tears, of shattered hopes, I finally found a doctor who listened, who believed me. I always think back to that any time I try something. I remember all the timed I failed or the situation failed me, and I think about how many times I tried again before finally getting some success. Every time we fall, we shouldn’t wait for a special day to make our lives better. We should get up, and push forward. At least that’s what I think, and I try to lead by example.

Philosophy, Entropy, and Housework

~ Olivia Hill ~ Leave a comment

Before I start, I’d like to mention that this piece is a creative experiment on my part. It’s less of a blog about life, and certainty, and more of a blog about an idea I play around with. It’s a bit technical sounding, and this is most likely because I have a science background and am used to reading about these topics in textbooks and dry research papers (bear with me if you can).

I’ve been really busy lately because I got a new job. I’ve also been trying to finally stay on top of the housework and cooking; I’m proud to say I’ve succeeded so far. Our home is clean, the laundry is done, and we’ve eaten healthy meals 5/7 days. I’ve even had time to start a project.

I’ve noticed this week, that keeping up with all of these things has been stressful. Managing my life in a way that maintains cleanliness and order, is inherently difficult. Why? Because scientifically, “chaos reigns”. Entropy is a part of thermodynamics, it’s also used to describe the idea that everything declines into disorder, as opposed to becoming more ordered. This is a really complex idea, that has other facets and nuances. For my purposes, we’re going to think of it in a more abstract and philosophical way, and not in the typical atomic level of thinking (so, no sending me death threats my chemistry friends).

My philosophy of entropy: if something can decline into chaos, it will without sufficient energy placed into it. This is my own build on “Murphy’s Law” which has typically been quoted as, “If it can go wrong, it will,” or various versions of that sentence. For an example, I recently started a job as a data associate. I sort through data as part of a team, and we all organize everything the best we can. That’s the order and energy we put into it. If we don’t put as much energy into organizing it, as energy is put into adding new data to it (hint: we couldn’t possibly), it’ll be less ordered than ordered. In life, I try to think of things this way. If I am trying to keep the house clean, and prevent problems, it requires a lot of energy.

Whether I have the energy or not depends on a lot of things. Did I have help? Was my chronic illness making me tired? Did something happen to add more chaos than I have energy? The big one is chronic illness (surprise, I’m bringing that one up again). Does it make sense to beat myself up and stress myself out over the energy I don’t have, or is it better to just do what I can and accept chaos will happen?

I do what I can, there will be days when I cannot possibly put enough energy into maintaining order, when that happens it’s my job to accept it. Chronic illness is always like this, because often our bodies give us chaos in truck-fulls. Any Spoonie can tell you that trying to keep everything perfect is an uphill battle, and sometimes you’ve just gotta let yourself slide downhill a bit before running as far as you can again. Does this mean I just let everything get worse and enjoy life and stop stressing? That depends on how much time I have to slide, and run again.

This requires a thought about certain illnesses that shorten our lives. If I was diagnosed with a form of cancer with a historically poor remission rate tomorrow, I would most likely stop worrying about fixing my home chaos, and put all my energy into disrupting my physical chaos. My heart condition on the other hand, is not terminal. I have a seemingly extensive number of days to spend fighting the chaos and making our home nice for the man and cat living there with me.

Every system has a set amount of energy. Energy cannot be created or destroyed, only transferred. Each person has to decide where they want their energy transferred to, and that requires motivation. I always try to have a reason, a good reason, for putting my energy somewhere. My energy, especially as a Spoonie, is valuable. I don’t want to throw it at useless things, so I think about why each thing is worth it to me. My boyfriend and cat take priority because I love them; I want them to have a nice home, and comfortable lives. It’s worth the energy to me to make that possible. My body is also a priority, so when I need to I put my energy into resting, sliding downhill and relaxing for a bit. It’s a balance, and that’s always the goal. That’s the whole point of my blog: balancing my life while living with chronic illness.

No matter what you choose to put your energy into, if you find the right motivation, fighting the degradation into chaos is a lot easier.

End note: This isn’t my best writing, and I know that. I didn’t put nearly as much time or thought into this as I normally would. I’m trying to make content weekly and unfortunately my energy input wasn’t as much as the chaos. Hope to post next week; thanks for reading!

Burn-out, Balance, and Change

~ Olivia Hill ~ Leave a comment

Go on social media, and you’ll see a thousand videos that make you laugh, cry, or cringe. Some gain their followers or reacts by being controversial. Some prefer to just produce comedy. Some are designed to help the world move in the direction the creator feels is beneficial for us. There’s always a video to find. There’s always a person behind the video’s creation. There’s always an audience that forgets about that person.

When I started my blog and YouTube channel in 2018 it was a way for me to get away from things going on in my life. They were rough, and not things I could change or control; so I chose to change my focus. I used my free time to focus on hobbies and art, and making videos from those. I used my weekend mornings (which were unfortunately very lonely) to write blog posts. It was phenomenal, because even under the weight of my problems I still managed to get up and do something that made me smile. I chose last year to only put things up when it suited me, because my life changed and posting all the time wasn’t feasible without giving a huge part of myself to the wants and needs of a social media audience. For this reason, my “brand” hasn’t gotten very popular. This is okay with me; I just want to do what I love and have fun with it. After all, this was my stress relief, not work.

My actions and choices aren’t the norm, as a lot of social media personalities choose to completely involve themselves with their channel or blog — to the detriment of their mental health. I thought about this two days ago as I watched a video from a popular video personality who makes down to earth mom-comedy. She talked about how she’s been stressed and spread thin; that her husband sent her to a hotel at night to get away from everything and just relax.

In our country it’s normal to expect a person to produce a product. Whether that product is entertainment, a service, or a usable good, we are all expected to be productive members of society. Your worth is only as good as the role you play, and that’s incredibly stressful. Don’t get me wrong, I think everyone should do something. It doesn’t seem right to sit around all day and do nothing at all; but it doesn’t have to be for the purpose of proving your worth. I think doing things simply because you love them has value. I believe going to a job every day because you love it, not because it helps more people, or saves lives, or makes the most money, is what brings happiness. Maybe that shines a light on my own values, but it certainly couldn’t hurt to consider. Because the alternative is a world where everyone does things they hate because they want to be valuable, where everyone is depressed and anxious because it’s impossible to be valuable to every person.

I’ve watched friends crumble under the pressure to match other’s expectations. I’ve listened to new college students emit waves of anxiety over making it through, whether school is something they want to endure or not. I’ve experienced my own anxiety over not being productive enough; in fact I worry so much about it that I’ve melded my hobbies into productive endeavors so that I can have productivity and stress relief in one nice little package. A real anxiety reducer…if you do it right (I don’t always do it right).

My housekeeping job has been incredibly fulfilling. I help patients get what they need each day, within the tasks I’m permitted to do without an STNA license. Some days I can make them laugh, or not feel so alone, or get them water and a blanket, or just keep their room clean so it feels a little bit nicer. It’s a job that’s worth doing, that needs doing. It’s a job that isn’t for everyone. The days are long; in my case it’s 10 hours at a time of cleaning patient rooms and function rooms. It’s a job that, if you use common sense and good time management, plus some good interpersonal skills, you can get through quickly and smoothly. It takes navigating patient preferences, surprise messes, and day to day changes, all while cleaning up the things that happen in a medical setting.

It can be gross. It can be tiring. It can be thankless. A lot of the time, however, I receive tons of thanks from patients and their families and our staff. The team I work with is supportive and adaptable, and our supervisor is excellent at her job. They’ve been my home away from home for over a year, and the housekeeping staff have been my work family for about 6 months.

I had planned to stay two years.

I wanted to be there for them after two years of 10 different trainees walking out on the job. Of not getting their vacations, and working understaffed in a field that isn’t exactly easy on the body. Life didn’t exactly agree with my plan. I put in around three weeks notice, and I’m trying my best to do a great job for all of it until I leave in mid-November. Part of me feels like a failure, the other part feels like this is the right decision.

Society tells me I should stay in this job, regardless of how that affects me or my family, because I’m producing a valuable service. My ideals tell me it’s time to go before I burn out trying to balance work and home life; I’m needed at home in so many ways.

I could go into all the detailed reasons I’m needed here, to cook, clean, do laundry, and provide support wherever I can because the people I love need it. I could go into the health reasons that the physicality of the job is taking its toll and I need to find something just slightly less rigorous. The job is a sprint, whereas I’m more of a slow marathon kind of woman. Three days of 10-hours in a row, sometimes four days, and then one or two days off to get the housework done just doesn’t work when you’re trying to get meals on the table each day, and the spaces you live in clean. Waking up at 4:30 AM, and then the next days waking up later for a different shift or a day to fit my family’s schedule, means my circadian rhythms are extremely off. My body is in a constant state of jet-lag.

If I had a different home life, if I was at a different point in my life, or if my body had just slightly more endurance, would mean I could easily continue working this way. For now, I need something different. I need a regular schedule that’s also either flexible, or within time frames that let me cover my responsibilities at home. Some people see this as a weakness, but I see it as a strength. If I find a job that fits well with the rest of my life I’ll be a more productive employee. I’ll be awake and alert, well nourished, and ready to take on new challenges each day. I won’t have the same level of stress that I do now. I won’t be worried about how I’m going to get it all done, because I know I’ve planned for my responsibilities, and a few surprises too.

I don’t want to be like the social media personalities who burn-out and need to get away at midnight. I don’t want to be that person who loses the important parts of themselves and their lives for a job, when there are easily alternatives which suit me better and companies I can be even more helpful to. I also don’t want my career to be the marker of my value. My health, to me, is the most important thing because if I lose it at 30 from burn-out then everything I’ve done will be for nothing anyway.

I want to be productive, I want to fit into society’s idea of valuable, I want to be that model employee. I also want to be a good girlfriend, a good daughter, a good friend and pet-owner. Someday, I want to be a good wife and mother who helps keep her family healthy. I want to be a good example to my children, who can look at me and see a mother who knows her limits, and balances her priorities in a healthy way. The thing that makes life great is the process from start to finish: what we do with this time, not how we end it. Money means nothing if I have to spend it all on medical bills. The approval of a company means nothing if I’ve alienated the people I love, focusing on work so much I forget to actually love them. Our lives are a balance, and sacrificing that balance feels more like failure to me than failing my original plan to make adjustments. Small failures help us grow, but if we fail to find balance in the process of our lives—that’s sometimes too large of a failure to come back from. I’m not afraid to fail, but I’d prefer it be in the ways that help me grow.

Chess, Leadership, and a Polymath

~ Olivia Hill ~ 1 Comment

I’m in medical limbo right now, waiting to get a neuro-EMG done, so I’ve been trying to take it easy in my free time. Normally, I’d be writing, creating something, or organizing another part of our home that probably doesn’t need to be organized (again). Lately though, I’ve been playing Runescape (not old school, sorry, traditionalists). For those of you who don’t know what Runescape is: it’s an online MMORPG that’s been around since 2001 and was created by Jagex. It has a massive player following and is incredibly extensive in story-line, mini-games, quests, and choices. So. Many. Choices.

The really fun thing about it is those choices. Don’t like to pick just one thing? Try 27 different skills to master. There’s so many things to explore in game it’s impossible to get bored. You can free-play, but a membership is completely worth it. I’m not here to advertise for them though; I really just want to talk about our society’s idea of choosing one thing.

My entire life, I’ve been told “you have to choose one thing to specialize in”, “you’re a beginner in everything and a master of nothing”, “you’ll never find a good job if you don’t pick something”, etc. the list goes on.

Well you know what? The list does not go on for me. I’ve never seen my way of thinking as a problem, I never considered my life was less because I enjoyed many things. If anything, it was better, because I always had something to do. Runescape was built with this “polymath” style that I love, and other people love it too. Why is it that in games, we all praise the well-rounded, do-everything players, but in life…that’s unacceptable? I love learning new things, and I hate being told that I have to pick one thing and stop learning about the others. Lately, there’s been a lot of talk on social media about how this is a product of late stage capitalism; how it’s because we’re seen as work-horses, instead of individuals with unique minds. I don’t know enough about that to say for sure, but I do know I’m not fond of it.

Finding jobs is difficult sometimes because unless the supervisor hiring me understands that my way of thinking is valuable, they won’t see my value. Even my social media sites for Lock, Stock, and Spoonies don’t stick to one thing and I don’t think anyone minds much. When it comes to job interviews? It comes off as wishy-washy. Which is a shame, because here’s why it isn’t: I know I like these things. I am not uncertain about any of it. I know what I enjoy doing, I know that I’m a hard worker, I know that I have skills that an employer would find valuable, but getting the chance to prove it isn’t always easy. I love organizing things, multitasking (I guess the new term is task-shifting), occasionally doing monotonous tasks which allow me to clear my head and gain some respite, but also doing things that give me purpose.

Research was fun, but I also had a hard time imagining myself in grad school and tied to the research other people wanted. Could I do it again? Probably. Finding the right lab would be crucial, with the right tasks. Microscopy, over animal research, sounds so nice.  I really enjoy maths, and I loved my courses in school, but I’m good at theoretical mathematics, so where do I go that wants that with just a bachelor’s and a basic knowledge? I loved the props, makeup, costuming, and hand and computer drafting courses I took in Cincinnati’s College Conservatory of Music, but I wasn’t there long enough to master any of it. I would love to have the money to get myself AutoCAD again so I could play around designing things digitally. I’ve danced and I loved the physicality and joy it brought me, but my health conditions have made it hard to do regularly. Ballet will always hold a special place in my heart, and hip-hop was just the most fun if I was feeling creative. Filing basic medical records (the kind that follow a template and don’t require specialized education) for my job originally was actually awesome; I had purpose there, and it was exactly the kind of work I could do for hours and never notice how long I’d been working. However, the position was part-time, and I have bills to pay. I could continue listing things, since my list of enjoyable work is pretty long, but I’ve never quite been able to find that job that screams “me”. I enjoy being a housekeeper, but the downside is the physical requirements of the job are exhausting. I find I have little energy for much else given my tachycardia condition.

I want to continue growing, and learning, and problem-solving. I want to wake up every day knowing I’m doing what I love, and that’s not hard to find when it comes to me. I want to go through each day following my passions, and being myself; not fitting into a box someone else has made for me. I know that sometimes, jumping into that box is necessary. We all have things we have to do to survive, to help those around us do their best, even if those things aren’t something we enjoy doing. Life is full of bland, red-tape type tasks, and we do them because we have to. Taxes? I hate them, but I sit down and try to learn more about the system while I do them, because at least then it’s a little more fun than before. Bills? If you set a schedule, and follow a budget, they aren’t so bad as long as you’re making enough money (sorry to those who aren’t, that’s a whole other story that I hope you don’t have to live long). Paperwork you’d rather not do? I try to sit there and just take it one line at a time and think about the rewards that come with it being done: peace of mind, financial security, or job security etc. Need to care for someone else? Some parts of that job are hard and no one likes them, but we get to see another person thrive and survive, and that’s worth it. There’s nothing wrong with being the person who helps hold everything together by doing the job no one else wants. I’ve done that job multiple times, and I’ve enjoyed all of them.

The point is, I can love many things, and dream of the perfect job, while still understanding reality and necessity. I’m not wishy-washy, I’m a polymath. I’m not stuck, I’m traveling to my destination. I’m not giving up, I’m determined to find balance in my life. I’m not passionless, I’m so full of passion it can’t be contained to one subject. Our world is full of unique people, unique minds. Everyone processes information differently, and instead of embracing the unique talents our world is full of, a lot of people only want to surround themselves with minds like theirs. Everyone has that moment, where they’re tired and just want to talk to and work with someone who thinks like they do. It’s less stressful, so I get it. But when you stop and look at each person’s abilities, if you look at the larger picture of how each person fits together in a team, it gets easier to see a functioning whole. Every video-game has the right idea: your team is made of people with special skills and all have their faults.

Chess, the game of kings, is played around the notion that each peace has their faults, and their talents. The knight can travel the entire board very quickly, but he can also get trapped easily. The queen is versatile and an incredible warrior piece, but she’s weak to the bishop (and visa versa) and she can’t jump out of her own lines. The rook can jump to special defense of the king, but he can’t travel diagonally. The pawns have two special sneak attacks, but their straight forward moves put them at a disadvantage. The king is a slow and steady piece who changes the entire outcome of the board based on his moves, but if he’s captured the game is lost. In order to win, all pieces have to be used together, to form the perfect war team and overcome your opponent’s strategy. The reason it was the perfect game for kings, generals, and advisers, was because it mirrors real life leadership.

Leaders learn their team’s strengths and use them to their advantage. They don’t try to ask a fish to climb a tree (as the popular quote attributed to Einstein goes), they tell the fish to swim. If as a leader, you can’t get your team to mesh, maybe you’ve got them doing the wrong tasks. Sometimes, in our country at least, it feels like finding a job is about fitting into a box. The person interviewing you is looking for a specific person with specific skills; and this is necessary to a point. But there are only so many people, and only so many interviewees. Maybe some jobs wouldn’t have such high rates of turn-over if they started looking at their interviewees, who are eager to work and help, as an individual with a skill. If corporations started creating positions for the people who come to them, instead of fitting one person into a cookie-cutter job, they’d be fluid and adaptable to change. The world is changing quickly, our environment, our governments, our mindsets. The members of each team, whether it’s research, government, education, or corporations, they can play a role in helping those entities thrive, or fail. It depends on how willing our leaders are to adapt and play to their team’s strengths. If not, they may find their team breaks under the weight of change.

I want to find a job, a career, a team, that plays to my strengths and balances out my faults. I’d rather be on the team that can take change head-on, not the one that breaks underneath it. The hard part, is finding a team, that’s looking for a piece that looks like me. I’ll keep looking.

My Parasthesia, Brevity of Life, and a Fellow Spoonie

~ Olivia Hill ~ 1 Comment

I mentioned this in my last YouTube video, but I haven’t gone in depth about how it affects me mentally, or how some of my daily life is different. I have paresthesia, or numbness, in my hands and occasionally my toes. Most notably in my right hand.

Now, when I tell people this, I get varied responses. Most are the kind that are dismissive, or sympathetic but also not touching too heavily on the implications. But two responses I’ve gotten were empathetic, and/or supportive, and the one that was both came from a fellow spoonie.

First, I want to talk about how I feel. I’m not throwing a pity party, but it’s also normal to go through that sometimes. So, if you’re someone who’s in that place right now with your own illness, that’s okay. It’s normal to have moments that feel hopeless. Congratulations, you’ve embraced your humanity. But that isn’t me right now, and it hasn’t been much this whole time because we still don’t quite know at what level of seriousness this all is anyway.

I’m not feeling sorry for myself. Most of all, I’m not scared. Not in the way people think anyway. I’m not scared of having my hands go totally numb to the point where I don’t know they’re there unless I look. I’m not afraid of the worst case diagnosis (one possibility of which is neurodegenerative). I’m not afraid of having to alter my lifestyle; considering I have already done that with my other illnesses.

What I do fear is running out of time to do the things I love. Many of which require good hand coordination and dexterity. Piano , guitar, painting, drawing, cooking, sewing. It’s been difficult trying to do those things lately.

My handwriting, which has suffered greatly, is not the way that I would prefer. I used to pride myself in my beautiful handwriting, and now my hand cannot continue writing well for a long amount of time. My boyfriend has started checking the temperature of my kitchen sink water before I wash dishes, because I’m unable to feel how hot it is. He went to wash his hands and realized I was burning my own under the water.

Sewing the most basic things is painful. I haven’t been able to get to a piano to play and luckily guitar isn’t affected much, but will they be affected in the future? Drawing is almost impossible when my numbness is at its worst. Life is so short, but that brevity becomes more drastic when my skills are declining.

I’m eager to find out what’s wrong, so that I can move forward, get the accommodation I need, and start making a plan. I’m much more uncomfortable with the uncertainty, than I am with the diagnosis I might get. If it’s just a pinched nerve, then I’ll do the treatment and try to heal the best I can. If it’s a more chronic condition, then I’ll make a plan, and move forward.

I was more scared of losing my favorite hobbies up until recently, when I met a fellow spoonie who has peripheral neuropathy. He cannot feel his legs, and must look down at them to walk. He’s had to relearn to walk multiple times. That’s his reality. He was empathetic to the whole experience, but not patronizing or dismissive. He didn’t tell me to stop worrying, because he understood that worrying isn’t really what I’m experiencing. He knew I was only mentally preparing for all possibilities. He said it straight: there might come a day when you want to quit because you can’t seem to do anything. That I might lose more of my feeling in more limbs. That if that worst case scenario happens, I simply want to be prepared. He doesn’t quit, he knows the struggle, and he moves forward. So, his advice was this: If you look at your hands, it’s easier. Your brain will adjust to the idea that the signals it’s getting are different. Just work, go through the long process, and don’t panic if you can help it. He and I agreed that breathing and remembering that if we just remain grateful for what we can do, we can keep learning, growing, and most importantly: living.

This advice made my day, not because I didn’t already know, but because it was coming from someone who had lived it. When a doctor or PT tells you these things, it’s hard to believe that it’ll be that easy. But when someone who knows what it’s like does, it reminds you that sometimes you just have to change your perspective. So, if I have to get special art supplies, or draw more slowly, or use a different art medium, or hand sew less and machine sew more, I can. Loom knitting is already my favorite over traditional needle knitting. Making clothing can be less detailed and more basic and I can work my way up to detail.

And if, eventually, I cannot do those things at all anymore, I will find another hobby to enjoy. And if eventually I can go back to PT, or there’s another treatment and I don’t have to deal with this again, then even better. I can go forward with an even greater appreciation for how my body functions. No matter what, I’m not going to fear what happens. I will fear becoming complacent. I will never stop trying and moving forward even if every movement is painful. I will use my spoons to the fullest and keep growing and learning. And when all else fails, I will ask my loved ones for help when I need it.

No Hunger. No Thirst.

~ Olivia Hill ~ Leave a comment

It took me about 4 years to realize, just this June, that I don’t experience hunger or thirst anymore. I remember that I did experience them, but I don’t remember what it was like.

When my boyfriend, or my parents, or my coworkers say they’re hungry, they mean they’re experiencing hunger. For me, it means I’m experiencing stomach growling, or I’m feeling faint and recognize I should eat. I have an appetite and can tell you which foods I could eat, but I have no motivating drive to eat immediately. I do, however, know when I’m full. It’s strange and to be honest I haven’t spoken with my doctor about it yet.

More documented globally, but also not discussed with my doctor personally, is my adipsia, or a lack of thirst. My body needs water, but I don’t feel the thirst. I’ve had to set alarms to drink water and often have to push myself to get up and drink.

If I get too dehydrated, I’ll have a panic attack not related to my mental state. I still won’t feel thirsty, and it took me a long time to figure out that drinking water, especially before bed, alleviated these. I was looking for something to take my mind off of it, chose to get some water, and voilà: relief.

I think (I can’t know for sure) that this is because of a medication I was asked to try in 2015 to help my symptoms. As it happens, I’m allergic to it. The first day, I dry heaved for hours and lay on my floor waiting to die. The second day, I realized I hadn’t had any food or water in 24 hours and I didn’t feel the desire (or appetite) for them. There was a weird hole where those feelings had been. Unless you’ve experienced this kind of absence of feeling in some way it’s difficult to explain. I immediately contacted my doctor then, and listed the medication as an allergy. She promptly asked me to try continuing it for 3 more days. No thank you.

I eventually started getting my appetite back, if I put food in my mouth it tasted good and I could eat until full, and I could basically chug water until I’d drank enough, but I still didn’t feel hungry or thirsty. So, I learned to watch the clock.

A weird thing: I craved sugar. Always. Science has shown us that sugar is extremely addictive. I can really only assume that in my case, I still have my addiction to processed sugar so I can reach for that any time. I have to work hard to remind myself that it doesn’t count as a meal.

I gained, I think, a very small feeling of hunger back since I do have an appetite, but thirst is another story. If I’m not active, I can literally sit there for 24 hours and never notice I need water. My dizzy spells tell me I’m thirsty.

It’s strange, and I’ve seen some people in chat threads say they’ve experienced the same thing. I wonder if there’s something they can do about it, but if not it’s pretty easy to manage and work around. If you’ve experienced this, leave me a comment about it!

Me and Food

~ Olivia Hill ~ Leave a comment

As a Spoonie, my challenges are unique because no one’s life is the same. One aspect I know isn’t unique is the anxiety that comes with eating during or post-gastric illness. It’s pretty common for me to find people who relate to food avoidance due to illness.

When I had my first bout  of illness, I was really afraid to eat at all. I spent months in bed, fighting nausea and eating made me feel so much worse. One bite of food meant going from sitting upright, to curled up in the fetal position kinda wishing I could die. Literally. I would tell my mom a lot that I wanted the hospital to just give me sedatives so that I could sleep through everything, or I was really close to just giving up on life. Simple things like sitting up, or staying awake for more than a couple of hours became complicated and difficult. I took a lot of hot baths to soothe my stomach, and went days with minimal food.

Goldfish crackers probably saved my life.

They were easy to digest, so I didn’t get sick from eating them. I’d go through a large seal-able bag a day of the whole grain baked kind. The salt probably helped keep my electrolytes up too. Aside from those, I could eat a little bit of apple sauce, and white bread (wheat bread is still a no for me even though I used to eat it daily), plus juices and broths. Some days, I’d get so hungry I’d give in and ask for an Arby’s classic roast beef and a sprite, eat it all, and then regret it. But, I was really lucky to be born with a strong stomach, so I actually kept the nutrition from everything I ate instead of vomiting. That in itself was probably torturous just because if I had gotten sick I probably wouldn’t have felt nauseous anymore. The reality is, that torture meant I didn’t need to be hospitalized or need a feeding tube or TPN (basically IV food).

Processed food was the best for me, because I could actually digest it. Before my gastroparesis diagnosis, which came long after my Inappropriate Sinus Tachycardia/POTS diagnosis, I was using trial and error to find foods I could eat. Afterwards I was able to use what I had found, plus some good advice from the doctor and other gastroparesis patients, to find a better diet. I got really lucky, when CBD was legal to use, it, plus other enzymes I bought on Amazon, helped me eat enough to train my system to digest better. My particular type of gastroparesis is actually reversible and CBD oil was a huge help. I was really disappointed to see it become illegal in my state and am hoping that in the future that might get reversed.

One thing that helped me get through it was actually really problematic for my digestive system: laxatives. Because digesting food was difficult for me, emptying my system stopped me from being nauseous. This had obvious problems: I typically went to important events with zero food in my system and no water, and it wasn’t helping me heal. But, when it came down to helping me have some semblance of life, it was almost necessary for me at the time. Then I was introduced to CBD oil by a friend and I could actually live my life again. I could eat, and go out, and didn’t feel like I was half-living.

The one thing that stuck was that I still have go-to foods for days when I have plans. Goldfish crackers, Cheese-its, candy, processed food, soups, and Pop-Tarts. I eat a lot better now, but there are still times where I’m not getting proper nutrition, or enough fluids. When I do feel sick, I often make it worse by failing to eat or drink anything, just because I’m afraid of getting sicker like before. I also have a lot of anxiety about getting sick. When people say they’ve had the stomach flu, or even if someone totally random vomits and I don’t know why (could be a hangover, or food poisoning) I get a panic attack. I work around this a lot and am still in the process of getting through it so I can eat normally without worrying so much.

I was extremely lucky to have very mild, and reversible, gastroparesis. I’m lucky I even get the chance to eat again. I used to make big lists of foods I would eat if I could, and now I can eat most of them. Some I cannot because we found I have a lot more food allergies than I realized, but the list of things I can eat is still extensive. I learned a lot about myself and even reduced my instances of  IBS just by learning what foods irritate my gut. Moving forward I hope someday I can eat with zero nausea all the time, and not worry so much when others are sick.

Headache and My Daily Life

~ Olivia Hill ~ Leave a comment

I haven’t been very active online lately, or at all really. This post is just to increase awareness of what daily life is like with chronic illness. Everyone is different, some people have a much harder time than others; I’m relatively lucky but I still think it’s important to share the minor problems too.

Lately I’ve been dealing with a near constant headache. I’m not sure what’s causing it, if it’s a migraine, a result of my blood pressure jumping around so much, or if I should see my doctor. If it continues much longer I’ll definitely be seeing someone. It’s been making it difficult to focus, think straight, or get things done.

My daily life has been focused on maintaining daily exercise – a light routine my cardiologist would like me to do to increase my body’s ability to respond to positional changes – going to work, and keeping our apartment clean.

If you follow my YouTube channel, you’ll notice all of my videos have been of me playing Witcher 3 on the PS4. It’s been easier to do that but lately looking at a screen has been painful.

I’ve tried increasing my fluid intake, acupressure, lowering my stress, etc… Nothing helps. I’m beginning to think that, just like pretty much all of my health issues, it’s just another annoying symptom I’ll have to learn to live with.

That’s the reality for most spoonies: can’t fix it, have to live with it for who knows how long, maybe forever. It’s frustrating to say the least, and depending on your situation and symptoms, it can be devastating to your goals or just your general wellbeing. Physical pain and discomfort has a negative affect on mental health as well. It’s hard to stay above the line where your symptoms create a steady decline in health.

I hope the symptoms I’ve been dealing with get better as I try to strengthen my body and endurance, but it’s definitely setting me back in my own personal progress in life. I’m just going to keep moving forward and tackling problems as they come. Hopefully I’ll have more content for everyone soon.

In the meantime, I’ve been trying to update our cat’s Instagram @yurithechainchomp and soon I’ll be compiling a playlist of the best witcher videos with details as to where to find things. Good luck to anyone dealing with their illness more than usual lately, and best wishes as we move into spring!

Diamond Headache Clinic Slideshow

~ Olivia Hill ~ Leave a comment

This post was requested by Diamond Headache Clinic. I recieved no payment to post it. I have read through the information and I think it would be a good resource for people who read this blog. I am not and have never been to the clinic and will always recommend anyone to look up reviews and research a medical facility before visiting them for treatment.

I hope this slideshow on types of headaches children may suffer from is a helpful resource!

Presentation courtesy of Diamond Headache Clinic

If the slideshow fails to embed, you can view it here

From Start to Finish

~ Olivia Hill ~ Leave a comment

What’s the best way to manage time? How do you organize your own ambitions and interests? Do/did you just pick one to focus on and leave the rest behind? Do you do a little bit of each every day or week? Do you master one and move onto the next?

I think it’s safe to say I’m an organization fanatic. I love trying new ways of organizing my things and my time. I love filing at work. I love sorting out my things and folding clothes and arranging items. I love trying new time management apps and making lists; you get the picture. Anyway, my whole life, I’ve always made it my goal to improve in every aspect of my life. Lately, due to my graduation coming sooner than expected, and the added fact that I no longer attend classes, I’ve needed to rethink my time management. I’ve got to consider what I want to do for my future career-wise and with my hobbies.

I’ve been feeling like my old method of doing a different hobby/endeavor each day is failing me in terms of my potential. So, here’s my new plan:

Start something. Finish it. Move on.

Whether that thing is beating a videogame, learning a language, getting my body into shape enough to do something specific, writing, knitting, sewing, etc…

The only added rule is I also have to maintain the cleanliness of our apartment, as well as keep up with daily responsibilities and maintain things I’ve learned or achieved already. What’s the point of learning a language if I forget it a month or two later?

This is the way I’m going to try things for a while. Recently I’ve been trying to beat Witcher 3: Wild Hunt for PS4. You can check out my YouTube channel for those broadcasts. Then I’ll do something else, finish it, and move on. I hope this new way proves to be more beneficial. The way I’ve been doing it seems to have downsides.

In K-12 school, the worst part of the way we do it in America, is there’s always a review time which ends up becoming a “we’re learning it all over again” time. We’re thrown so much information, and the focus pinned on testing so much so that students often do rote memorization just enough to remember information for exams and then it’s forgotten in a night. I can’t tell you how many times myself and students I know spent cram sessions trying to “learn” the material to ace the exam. It doesn’t work and our teachers know it, but the system is broken and that’s how we learn here.

My way of jumping between tasks feels a bit like that: I don’t finish learning as often and I have a lot of half started projects which I’ll just have to restart later because I’ve forgotten what I was doing. It’s my little experiment; I hope it works.