Tag: Health

Comfort Facilitates Productivity

~ Olivia Hill ~ Leave a comment
Daily writing prompt
What strategies do you use to increase comfort in your daily life?
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Discomfort is necessary in order for people to grow and learn; comfort is necessary for healing, and for the longevity required to put that growth to use and encourage more in the future. Sometimes comfort aids productivity and practicality; it’s a great way to reduce the effects of PTSD when everything else around you feels very uncomfortable. My biggest strategies for comfort are integrated into my day-to-day in a way that makes room for the discomfort necessary for growth.

I’d like to focus on what I do on work days, or “productive days” (for when I have planed tasks but no paid work hours). Sources of discomfort that negatively affect my productivity – as someone with chronic physical illness, PTSD, and ADHD – should be quickly dealt with so that I can bring my best self to the proverbial table. I’ve got an arsenal of strategies at hand that will hopefully help some readers with similar problems:

  • Staying hydrated:
    • Filling up multiple, or one large, water bottle(s) first thing in the morning helps conserve dopamine during the day and ensures you’re drinking the best amount of water for your body’s needs.
    • Chew ice. It’s especially nice in a warm environment, or if chewing helps you focus.
  • Gain nourishment:
    • Sometimes cooking is difficult or too time consuming. Eat single ingredients right out of the package, or bulk meal prep on a solid day off and freeze your favorites to be eaten on a rotating basis all month (or longer).
    • If food helps you focus, keep dopamine inducing snacks nearby while you work – like your favorite treat or, my personal favorite, spicy snacks. Nothing helps me focus like a bowl of Fuego Takis, a V8 with Tabasco sauce, chili chocolates, or a spicy jerky stick.
  • Fight fatigue:
    • Whether you’ve got a heart condition, chronic pain, PTSD, ADHD, various forms of narcolepsy, other illness, or you just aren’t able to get as much sleep as your body needs, being able to fight extreme drowsiness is useful when taking a rest isn’t possible. Some of my favorites are also strategies for increasing dopamine to reduce ADHD issues:
      • Spicy foods
      • Scary podcasts/audiobooks (if it doesn’t interfere with your task)
      • Ice cold showers, ice cold foot-baths
      • Self-massage or foot rollers
      • Quick breaks for stretching or calisthenics
      • Wim Hof method breathing
      • Doing a quick walk around the room/up the stairs/around the house/block.
  • Reduce sensory overload or sensitivity:
    • If you tend to itch/hurt/lose focus etc. from certain stimuli or from stress, this is for you. The easiest one: wear something comfortable; how can you focus if the itchy lace from your blouse or your too-tight collar are distracting you?
    • If you’re feeling anxious, try to identify why or if there are things going on making it worse.
      • I like to try changing whether or not music is on or off, the type of music, and the volume.
      • I think about whether my sitting position is giving me pain that I’m consciously ignoring, but I’m sub-consciously being distracted by.
        • Add pillows, sit on the floor, change locations, take a pain-reliever, make sure your physical needs are being met (did you have water? food? sleep?).
      • Maybe you deal with itchy scalp or dry skin, or allergy itch;
        • See if applying a gentle moisturizer/oil, taking a cool shower, wiping with a cool cloth, applying ice, or brushing your hair and pulling/pinning it back help.
        • Wipe out your ears, wash your face, or brush your teeth (or chew something minty) to feel a bit more refreshed.
  • Adjust your momentum flow:
    • Sometimes, the greatest tool at our disposal is our own inner momentum. I keep my daily momentum by adjusting my schedule to suit my brain.
      • You’ll have to find your own schedule but here’s one of my options depending on the day/my needs: I wake up early enough to get showered/eat breakfast/feel awake, partly because this gives me time before work to complete an errand. I don’t clean on the weekends, I use the early morning time to start with a cleaning task, and spread them out across the weekday mornings.
        • This starts my day with high momentum and lets me decrease it slowly throughout the day. I spend the rest of the day completing work or self-improvement tasks, then I can wind down into personal time and resting. This means I don’t have to deal with the difficulty of transitioning from a high momentum task (like showering, which uses a lot of spoons for me), to a lower momentum, then back to a high momentum like cleaning.
  • Increase your confidence:
    • A high level of confidence can greatly improve your comfort and willingness to try something new, meet new people, speak publicly, or tackle a difficult task. One of the ways I improved my own confidence was to build a wardrobe that made me more comfortable and confident.
      • Find out what clothes you feel more confident in, and then identify what’s stopping you from wearing them. For example, I love skirts, but I hate the limitations in sitting and movement if I want to meet the level of modesty and professionalism I personally prefer to have, and dislike not having pockets. Instead of just not wearing them, I wear tennis/bike shorts with large pockets underneath.

Ultimately, what works for one person may not work for everyone. In fact, what works for me, might have the opposite effect for you. My hope is that this list sparks your own ideas and helps guide others to incorporating the type of comfort into your life that helps you be the best you can be. Good luck!

FOMO

~ Olivia Hill ~ Leave a comment
Daily writing prompt
What makes you nervous?
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As a Spoonie, chronic illness isn’t who I am, but it affects every aspect of my life. My friends and family, career, pets, hobbies, thoughts, wants, and day-to-day are all changed because of the chronic illness I have. This means I miss out on some things that I wish I could do. More than that, I end up looking back on choices I made as a kid and as a healthy individual and think, “I could’ve done so much more, but I thought I had more time”.

I faced the possibility of dying young, at the age of 4, so I’ve always tried to take advantage of life, that’s not new. As a kid, I thought I’d have more time with my body working normally, so I rested more and said no to more things than I would choose to now. When I got sick in 2015, my first thought was how many times I should’ve said yes to an opportunity or invitation. In some ways, I was granted a second chance to experience more of life; I still have a lot of my functionality left, and I’m extremely lucky.

What makes me nervous, is waking up and looking back on my life and realizing I missed a chance to experience something. I try hard each day to make sure I’ve done everything I had the energy to do, but also while resting properly so I don’t lose more of my health. Finding that balance between rest and experience is stressful, and a lot of people with chronic illness deal with it. When I’m resting my body, though, I try to think “I’m resting now, so I can fully enjoy the next moment I have energy for”. Treating recuperation this way helps quiet the nervous ticking of the clock in my head, telling me I could be running out of time. The rest is learning to accept that there are just some things I can no longer do, but there’s still so much out there for me to experience. I’m not really missing out, just taking a different kind of tour of life. I’m always going to be nervous, but if I do my best to experience the present as much as possible I’m sure I’ll have fewer regrets.

For My Health and Self

~ Olivia Hill ~ Leave a comment
Daily writing prompt
Describe a positive thing a family member has done for you.
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There are a lot of ways to become a well-adjusted adult and a lot of ideas of what that might look like. For me, the traits I value that I believe much of society values as well are: respect, responsibility, self-motivation, and compassion. There are others, but my parents helped instill these in me in ways I feel made my life easier, not harder. Specifically, my mother, who consistently taught me about the balance between pushing yourself and resting. In my life, she’s the OG of the “work-life balance”. She respected my autonomy and personal boundaries without fail, and stood up for my freedom to be myself and choose my own life.

I can’t narrow-down what she’s done for me to just one action, but I can give you two major times her positive effect rippled into years of my life. When I was young and still figuring out who I was, and everyone had an opinion on what that should be, and when I was an adult and my condition started to become more extreme and debilitating. Both times, her respect and compassion helped me to grow and build those traits for myself.

When I was younger I was never forced to go to family gatherings, extracurriculars, friend’s houses etc. but was asked to make the choice myself. People may disagree with this, but I think it helped me grow into a better adult because the choices weren’t someone else’s, they were mine. The consequences the arose from those choices were then mine too, and I learned to take responsibility for them. My mother gave me the room I needed to figure out who I was, build confidence in that identity, and to make choices in my life that aligned with that. I knew that if I chose not to visit someone or attend an event I had no one else to blame if I didn’t like the end-result. Not only that, it also meant that every interaction I had was authentic and un-forced. It led to my own self-motivation in the tasks I took up, and a sense of care and integrity towards everything I do. She also taught me about respecting my body too: knowing when I was too ill or exhausted to keep pushing. It’s been a helpful balance that lets me prioritize the things important to me, while knowing when to recuperate for the other important aspects of my life.

In 2015, I was struck with temporary, moderate gastroparesis due to a virus, which meant I was extremely malnourished for an extended period. It also contributed to my pre-existing arrhythmia becoming more severe and chronic, and to the development of a second type of arrhythmia. I was miserable, and bedridden, and at the time we didn’t know what was wrong. Being a cardiac nurse, my mom had seen many patients decondition to the point of requiring even more treatment to get back on their feet. My entire life she’d stressed the need for rest when we were feeling bad; this time she was stressing the need for growth in a safe environment. Every day, we walked while my dad waited at home near the car, in case I passed out or needed driven back home. I truly believe this is why I’m not wheelchair bound today; considering my first nurse in a dysautonomia clinic I was admitted to said, “I didn’t realize you were my patient, you’re the first one I’ve had in years with these issues that isn’t in a wheelchair.” My mom worked hard to show me how to tell for myself when it was important to rest and when it was important to push myself. Every day that I am grateful I can still travel without a wheelchair, eat without a tube, and live without a pace-maker, I have my mother to thank for.

My mother gave me years of her time and compassion; on its own, that’s a hugely positive thing to do for someone. By example, she also taught me to respect others and myself, have compassion, take responsibility for the direction my choices lead me in, and to motivate myself to get work done or to rest when needed. There are so many others in my life who have helped give me those lessons too, but on top of all of those things I have my mother to thank for the amount of physical ability I still have left. She made sure I kept as much of my health as I was able to, and that is the most positive effect I can think to have on someone. Thanks, Mom.

Daily Movement as Exercise

~ Olivia Hill ~ Leave a comment
Daily writing prompt
What’s the most fun way to exercise?
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If you could bring Hippocrates to our modern time, you’d end up explaining that we’ve become more fast paced while also becoming more sedentary. He was said to be an enthusiast of proper exercise and considered it the key to health; he might balk at the idea that, in this age of modern medicine, we’ve created a new health crisis in an effort to coordinate our lives with the least effort possible. I can imagine him saying (in perfect English, of course, because I don’t know ancient Greek) “you have medicines to quickly fight fevers, but you’ve forgotten how to move enough each day?”

In his time, Hippocrates and his constituents used lifestyle medicine to aid in healing from various diseases. For me, I think it’s important to remember that we have all the tools we need to exercise with us, each day, at every moment. Calisthenic work, or using just your own body weight to exercise, is my favorite form of exercise. It can also be the most fun because it can take so many different forms; using small changes in your lifestyle to incorporate it into your day with little disruption.

If you’re anything like me, the idea of taking out an hour or more to do only exercise feels like time you can’t afford to lose, even on something as important as your fitness. Maybe you have kids, or are the primary caretaker of a disabled adult, or have to use your limited energy (hi, fellow Spoonies!) on the most important tasks which leaves little time for focused exercise. Calisthenics can be worked into your daily chores/routine and provide the right amount of exercise for your health.

Sitting up with strong posture, pumping your legs up and down while you sit, fidgeting, taking the stairs instead of the elevator, dancing while you cook, clean, or do other standing tasks are all ways to fill your day with movement. Most of these ways blend in with your tasks in an enjoyable way and might even become second nature. Incorporating them into your moments of fun, such as playing video games, reading, or working on a hobby, creates a fun and ever-changing source of exercise. What you choose to do is limited only by your imagination and physical ability. Make Hippocrates proud by adding more movement to your daily life and have fun doing it.

Staying Mentally Grounded in Social Isolation

~ Olivia Hill ~ Leave a comment

Part 1-My own experience with isolation, and how to stay sane:

When the government in my state announced the mandate that we should practice social isolation, my life didn’t really change much. I am fortunate enough to work for a company that values us as people, and has made working from home not only do-able, but enjoyable. This is, to date, the easiest social isolation I’ve done. And yes, I’ve done it before, more than once.

One thing that makes this different, and carries its own difficulty, is the uncertainty surrounding the situation as far as what the world will be like when it’s over. In the past, I knew the world would be the same when I re-entered it. Now? There isn’t so much certainty. If you’re struggling with that uncertainty, or the loss of normal daily life, it’s okay to grieve. I did every time and it was vital to my health.

The first time I was isolated was brief, and due to swine flu when that was the virus we were all worrying about. I was at home for two weeks, and the Stephen King mini-series marathons on TV were absolutely the only reason I didn’t sleep the entire time. I didn’t learn much this time, mostly because I was unconscious and resting for most of it. The thing I wish I’d done differently was text my friends more. I could’ve used the support and the social interaction.

The second time I was socially isolated, it was due to an extreme, but acute, bout of depression caused by the situation I was in during the fall of 2012. I will most likely write more about that in my next post, but for now: I lived alone, in a big city, with zero friends there or in my hometown, and I was expected to function completely alone.

First, I was fortunate to have all the creature comforts I could want and supportive parents. I had school to distract me, though I essentially stopped attending classes and disappeared from the world for an entire semester. I left my home once or twice a week to eat, and then enjoyed, to the best of my depressed abilities, Netflix, video games, phone apps, and an unholy amount of sleep the rest of the time.

This? Not healthy. That is NOT the way to go through social isolation and I really urge everyone to remain social and productive in some way. I nearly died, and I say that to press the point that it is not good for you. I wasn’t being forced into isolation, but I was isolated, and I handled that isolation in the worst way. It also seems to be the biggest temptation if you’ve lost your job or social connections during this time. No matter how alluring sitting on the couch watching TV seems, it’s not going to do you many favors.

The one good thing I did for myself then, which I do recommend, was that I took a lot of late night walks on the beautiful campus nearby. The fresh air, scenery, and exercise are probably some of the biggest reasons I wasn’t more sick (I left there with physical illness from ignoring my physical needs). It provided a needed respite from my self-imposed prison and restored my sense of peace and calm. If you can’t go for a walk, try to find images of nature or even a virtual tour of a park or facility you enjoy. You could even imagine your favorite outdoor place.

There was a little less “outdoor” for me during my third isolation but, it was also much less lonely, and healthier. My 2015 illness, which is explained in one of my much earlier posts, put me in bed. The summer heat kept me inside even after I was able to walk around.

I spent 7 months isolated with my family because I simply didn’t have the energy to entertain guests or have even a small conversation, for that matter. Believe it or not, I stayed mentally healthy the entire time. I was being physically tortured by my own body every minute of every day, and I was isolated with my parents, and I still managed to stay happy. Not everyone is so lucky and this was absolutely not completely due to my own actions. I am grateful for the people who helped me. None of us can do this isolation without some kind of support, even if it’s long distance.

How did I help myself when others couldn’t? I breathed. I was in a constant state of focusing on my breathing; a breath in for a four count, hold, and the slowest breath out for as long as I could manage it.  It’s a meditation technique but it’s also a calming technique medical professionals recommend for anxiety and to reduce all kinds of physical illnesses like hypertension. My entire day was me focusing like this, to stop the constant pain and nausea and to keep me sane. On its most basic level it satisfies the primal need for air and tells your anxious/stressed body “I am still breathing, I am still alive”.

If you’re feeling overwhelmed, this is a good way to get back to basics. If you are healthy and able, focusing on breath can be a wonderful way to ground yourself. Don’t stress about the “how”, just breathe in whatever way helps you. Try reading 10% Happier by Dan Harris for some excellent tips on different types of mediation and a great read in general.

What if you’re sick, and breathing is difficult? Or your panic attack is too overwhelming to breathe? I had days like that too, when my heart condition was bad and it felt like all the air was being pressed out of me. In those times, I would focus on a part of my body that didn’t hurt and think about what it felt like. It’s a mindfulness technique that takes your focus away from the negative stimuli and brings it to something benign and lacking any unusual stimulus. The bottom of my foot was my part of choice.

Part 2-Replacing anxiety with activities:

Aside from practicing mindfulness meditation, I picked up a lot of hobbies. Previously I had really only played video games, read, or watched movies. Now I was hungry for absolutely any activity to distract me. It worked.

Here are the things I did to entertain myself: I learned everything I could. I focused on self-improvement instead of entertainment and actually found I was more entertained that way.

YouTube is amazing. I learned to Knit, to sew more complex things, to embroider, and to solve a rubix cube the slow way. I practiced piano. I stretched and went for walks with my parents when it was safe for me. I read non-fiction books and fiction books. I played puzzle games. I did puzzles, almost constantly; we had a puzzle on the table daily.

I practiced drawing. I colored in adult coloring books. I took long baths with bath bombs and calming music. I learned anatomy (and then forgot most of it). I went on www.memrise.com (which does have more than just language lessons) and www.khanacademy.org and learned everything I could. I practiced mental math until it wasn’t difficult or scary anymore. 

I took in anything and everything. My mindset was “If I’m going to die, then I’ll die knowing I did a lot of things. If I’m not, then I’ll live with more skills/knowledge and maybe I can help someone else.” The fact that I wasn’t bored out of my mind helped too.

There is always something to do. Enjoy the view from your room. Learn something new. Count everything you see that is a particular color. Make something to donate or share like a fleece tie blanket or a heartwarming painting. Take time to appreciate your loved ones. Practice not caring what others think and being yourself, because we all need a refresher on that sometimes. Confront your fears. Share your fears with someone else. Give your pet attention. Give yourself attention.

Part 3- Gratitude

This has been the easiest isolation for me because I still get to talk to my coworkers. I still feel like I am offering something to the world (which isn’t a requirement, but it’s something I enjoy doing). I can eat, and exercise, and get out of bed. I can use my phone and have the energy to talk to loved ones.

I am fortunate. I know this. Some are not as much so. But if you’re reading this, and you find that you’re scared, or bored, or wishing you could get more social distance between you and the people you live with, maybe this will help.

Life is not always what we expect. Sometimes we have to do it differently, or alone, but we adapt and survive anyway. Every time I was isolated was different. The time that was the healthiest was when I focused on self improvement and my breath. My gratitude, and my entertainment followed naturally.

There is value to anything and everything, even if our culture tells us otherwise. Even if what you need to do is sleep, you’re resting your mind and body and that’s important. If you need to cry and grieve for the life we were living before, that helps to refresh your body and relieves the stress and pain. Everyone worries, that’s normal. Just remember to try to let go of the things you cannot change and focus on what you can. Even if the only thing you can change is the pace of your own breath.

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.

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!