Quarantine Life Before Corona

It’s weird seeing some of the parallels from my life when I suddenly got sick with a chronic, debilitating illness and the pandemic. People are describing emotions that the COVID-19 quarantine is bringing out that I felt when I suddenly got sick six years ago. I’ve been handling each step of the way a little better than you would expect from someone who does deal with anxiety, but after thinking about it a little, I attribute a lot of that to having experienced something that was, emotionally, kind of similar. Chronically ill people were prepared for this in a way that the regular population maybe wasn’t as much. Here are some thoughts I’ve had, both in isolating at home now, and back when I first got sick.


What would my life look like if it wasn’t for health concerns?

Back in the day I thought about this a lot because I was forced to give up my dream of continuing to work at my dream job. I had just completed the greatest internship of all time at Seventeen magazine in New York City, and was so excited to find a cozy (some might call it cramped) apartment to move to permanently. Instead of continuing on a normal path, though, I began fighting to have any taste of normalcy I could get. I got incredibly sick overnight and suddenly went from being a healthy 22-year-old to not being able to sit or stand without feeling dizzy or passing out. I was couch bound with the exception of going to the cardiologist or physical therapy to figure out how to begin my road to recovery.

Now I sometimes think about what the world would be like without all the corona craziness that’s going on. I would be able to see all of my friends and family, I would be able to go on normal date nights, and I would be able to continue to explore the world. I try to feel content being at home and remind myself how blessed I am to have my health and a few loved ones here with me. This time around, I’m just home bound — not tethered to the couch because of a lack of health. I’m trying to appreciate the fact that I am healthy during the pandemic, push myself to do yoga in the basement, and realize that things could be a whole lot worse. Not having a working body makes you feel so much more trapped than a comfortable home filled with food and an Internet connection.

This isn’t fair. 

No, it’s not. I’ve learned a lot of things in life aren’t fair. It wasn’t fair that I had secured my dream job, only to be hit over the head with an illness that knocked me on my butt. I was angry because I had always taken good care of myself. I ran several days a week, played intramural sports throughout college, and ate well despite having a good enough metabolism not to. I never drank excessively and wasn’t really risky with anything that had to do with my health. I didn’t pay a crazy amount of attention to it because I didn’t have to, but I actually did a good job maintaining a very healthy lifestyle. I felt so frustrated that I had done everything right and ended up being the one person I knew who had a crazy, weird health problem happen to them. It didn’t feel real, but being sick was my new reality.

We need to have a new normal with the reality of the coronavirus pandemic. It sucks not being able to do our favorite activities or see friends and family, but taking up new hobbies and finding the bright side of things is so important for our mental health.

Having a chronic illness made me realize that even though there may be unfair things that happen to you that suck, there is always something to be joyful for. Back then I got to spend quality time with friends and family. I learned that I am a lot tougher than I ever thought, and I learned that I need to be thankful for every single thing I am able to do, because some people aren’t as lucky as me. I am also convinced that I would have never met my husband, had I not gotten sick with POTS. The only reason I wasn’t in New York was because I had to stay in the area, and who knows what my life would look like now if I had been there instead. These are all blessings that came from the hardest thing that ever happened to me.

When will this end?

When I got sick with POTS I was told so many different things. “This is your life now, you’re not getting better” was the first thing a nurse told me. Later I was reassured that a majority of people who get POTS when they are young get a whole lot better in time. Since POTS hasn’t been studied as long as other illnesses, there weren’t always answers to my questions, but luckily through lots of physical therapy, lifestyle changes, and time, I’ve made leaps and bounds and know how to manage my health. I have far, far less bad days than good ones now.

It’s absolutely devastating having your life turn upside down and your routine completely trashed. Anyone with a chronic illness will tell you this. We’ll also be there to reassure you, though, that just because things change drastically doesn’t mean they’re forever — but perhaps more important, it doesn’t mean you won’t have joy in your life or that you’re doomed to feeling the way you do today. People are adaptable and learn to adjust to their circumstances. If you had told me everything I was about to go through right before I got sick, I would have had an absolute meltdown. I wouldn’t have been able to deal with knowing I wouldn’t be able to merely stand up without passing out, but you know what? I got through it. I somehow managed being genuinely happy the years I couldn’t even stand up or have a single normal day. Did I mention during this time I couldn’t go to restaurants, I couldn’t shop for my own groceries, and I even had to be taken home from the movie theater because the room was violently spinning around me, just from sitting upright? Do you see a few parallels between being chronically ill and being stuck at home because of COVID-19? The biggest difference for me is the fact that this time around I can actually move around and be more active, and don’t feel sick all the freaking time.

Take it one day at a time.

The easiest way to do anything difficult is take it one day at a time. When I got sick, I didn’t let myself think about what it would be like in one, five, or ten years if I still couldn’t get out of the house and do anything. Instead, I found things to look forward to every day, even if it was just a little TV show or eating one of my favorite foods. Now, under the stay-at-home order, I don’t think about how long it will be until I can see family and friends or go out to a restaurant again. I look for other things to occupy my mind, rather than spiraling about things I have no control over. This is so much easier said than done and if you slip up you need to be gentle with yourself, but there’s no shame in asking for help if you need it. Therapy can be an amazing way to help control anxiety, and even in these strange times people are doing sessions online or over the phone. Learning to be present and appreciate what you do have can be really hard in the face of adversity, but it’s the most rewarding thing you can learn how to do.

It’s okay to miss your old life.

Just don’t make it out to be something it wasn’t. I had to remind myself that even though I lost a working body, life hadn’t been all sunshine and rainbows before I got sick. I loved to run, but going for ten miles at a time was not a walk in the park. My lungs hurt, my legs burned, and I have always gotten bad shin splints from running. Now that I can’t, I often think about how much I loved it, but running isn’t always easy. Our lives in this weird little quarantine bubble have some bright spots we’ll miss. Whether it’s having your family at home with you, being able to binge on all the reality TV you didn’t have time to watch before, or being able to work in your pajamas, there are things that are good about the present time. We miss so much that we used to do on a regular basis or took for granted, but one day we’ll be back to our normal lives and look back at this as a little blip in our lives.

It’s also okay to be scared.

Losing every sense of normalcy is freaking hard. Find things to look forward to in your new life, and remember that so much of this is temporary. The pandemic isn’t going to last forever, and one day we will be out doing our own grocery shopping and going into work again. It’s so weird that we are all facing this uncertainty at once, but none of us are truly alone, and I think just about everyone has had a pit in their stomach at one point or another about how this is affecting each and every one of us. It’s normal to feel uncomfortable about something as big as this, but doing your best to focus on what you can control — and letting go of the things you can’t — does make the weight feel a little less of a burden.

And finally, circumstances change.

I am so thankful to have the health I do today. I get frustrated and angry when I try to go for a run and my heart can’t handle it, but I am so lucky to be able to go for walks without feeling dizzy, type on my computer without having terrible muscle pain, and I can cook now without worrying about my elbows or arms hurting — even if there is a lot of stirring involved. Things are constantly changing, and it is no different for the pandemic. Incredible minds are working to find solutions to this every single day, and I am confident that people are going to find ways for our lives to slowly gain a sense of normalcy.

I honestly don’t remember a lot of what life before chronic illness was like, in the sense that it’s difficult for me to feel like POTS was ever not here. I have to do a lot to manage my symptoms now, but everything has become such habit at this point that it doesn’t feel weird putting little electrolyte and sodium tablets in my water every time I go out to eat and I’m used to doing nerve glides and mobility work at the first sign of stiffness. This all feels so normal to me, so even if we do have some things that become a new normal, we’ll adjust. People are much more resilient and adaptable than we give ourselves credit for. I am not particularly strong or tough, and I really don’t like change. If I can go through years of being sick and dealing with a million changes, absolutely anyone can. We may not all be in the same boat, but we are all in this together, and don’t ever hesitate to reach out to others if you need help. Many people are looking for ways to help others, but just don’t know how.

mountain
I stumbled upon the Bible verse Isaiah 41:13 at the beginning of the pandemic, and keep it in the back of my mind when I have my moments of panic. I also think about how beautiful the world is, and how perfectly everything was made. Peaks and valleys in nature remind me of what life can be like, and we just happen to all be in a valley right now. I know one day we’ll turn a corner, though, and things will be much brighter than they seem right now.

Monday, Day 40

Mondays are always the ones where I feel a mild sense of panic. I’m not really sure why, because all the days blend together a little and I space my work out throughout the weekend as well, but I always look at the calendar when I start to overthink and notice that it’s the beginning of the week.

It’s been just over 5 weeks since I have been out in the world, and I’m still trying to take everything day by day. I see good and bad news every day, and have been able to keep busy for the most part. I currently enjoy having work to distract me, picked up playing Call of Duty — a game I never in a million years would have thought I would like — and ordered a few little crafts to do at home in the coming week. I also decided I need more energy, so since I’m no longer able to get my routine B12 shots, I got some vitamin B12 and vitamin D to start taking. I’m lucky enough to live in the suburbs, so can still walk outside some, and enjoy evenings on the back porch.

I’m going to get through a little more work then go do some yoga to try to relax and calm myself a little. I know we’re all cooped up and in this together, and I’m going to try to use this week to catch up with a few friends and see how everyone is doing. I hope you’re having a good week, and let me know how you’re keeping busy while staying inside!

Monday, Day 19

You know what bugs me? People who remember things well.

I know, I’m just being an enormous jerk because, as you may have seen on my SnapChat or Instagram story yesterday, I have the worst memory of all time. Like, possibly the worst. I’m trying to be proactive by fixing it, and restudying some good old elementary school history and geography, though — including perfecting the map of the United States by not getting Arizona confused for Nebraska. Yes, that happened.

Anyway, part of being like this includes a very strange confusion about how long we’ve been doing this. I actually don’t remember what day I started staying inside, but I know by March 10 I didn’t go out to eat and was hesitant about being anywhere fun because I had a bad feeling about what was coming. This was a date friends were still saying that the media was freaking out about nothing, and that the Coronavirus was “less deadly than the flu.” It’s funny how there can be a narrative that starts, just because one person starts saying it, then more and more people pass it along until it seems to be the cold, hard truth.

Last night my anxiety spiked again. Not because I’m having a hard time personally being inside — I keep reminding myself this is just a season and to make the most of it — but more so because I’m feeling on edge for all of my loved ones. I hope they’re all doing okay and aren’t scared or having a hard time. Today I’m feeling a bit better, but am still on edge worrying about other people. I know from Facebook posts that a lot of people are having a hard time managing, but I also think social media is doing a great job reminding people that none of us are alone in all of this. We’re all going through so many of the same emotions and uncertainties, but it really is so freaking encouraging how uplifting everyone is being. We know that one day this will be a distant memory, and maybe if you’re like me you won’t forget the way you felt during this time, but you will forget just how many episodes of shows from Netflix you watched, how many Sour Patch Kids you shoveled in your mouth while anxiously scrolling through the news, and how many days exactly you were quarantined. This will be a very interesting story to tell the next generation, and in the meantime we’ll all just keep pushing forward.

It Is Saturday

It’s hard to keep track of the days when every one is the same.

This is such a strange time in our lives. It’s kind of crazy to think that no matter what country people live in, we can relate to the fear and uncertainty of the exact same thing.

As I mentioned in my last post, I’ve felt a surprising amount of calmness throughout all of this. I am being incredibly careful and not going out or anything, but I also am not living in constant fear or anxiety. I think a big part of this comes from my time at home with POTS. I now have the experience to know that even with incredibly drastic changes that are completely out of your control, you can still have joy in your life, and perhaps just as important, things can and will get better. Staying at home when I have the physical capability to go out is new, but I know what it’s like to lose your functioning body and be stuck on a couch and still feel happy and make really great memories from it. Surely we can still have joy in days at home with loved ones still — or if you are quarantined by yourself, with people from afar. Thank God for technology.

A lot of this Coronavirus quarantine feels kind of like getting sick suddenly with a chronic illness. This time, though, we can all relate in one way or another. We are lucky to have each other, and all the help and support I’ve seen online has been heartwarming to say the very least. I love that people are staying inside despite being so incredibly bored, and that we’re looking to support small businesses in this time (As a side note, please message me any and all businesses that need some support — at the very least I’d love to follow on social, but if it’s a product I’d use I want to start buying from people directly, if possible!).

Something that I’ve learned with anxiety and having a chronic illness is that periods of time seem to have lots of different chapters that make up your life, but none of them last forever. This is really good for the tough chapters, and sometimes sad when the amazing ones come to an end. Nothing in life lasts forever, though, and I think we need to remember this as we keep moving forward the next few weeks and months. I know that days will sometimes drag on and uncertainty can be daunting, but one day this will all be a distant memory and we’ll remember the happier things more than the things that were hard. We’ll remember playing Nintendo Switch with our families, eating at home every night in front of the television, relating to a million of the memes that are online, and having walks around the neighborhood be our daily outings. We’ll all probably also have difficult stories to remind us of harder times too, but hopefully something good will come out of those, too.

I guess the only point I have in writing this is that if you’re having a hard time with everything right now, keep pushing through. This is a temporary time in the grand scheme of things, and I know we’re going to come out of it with new empathy and understanding for others. Also, don’t be afraid to ask for help if you need it. We are all trying to learn how to fight this in whatever ways we can, and want to be able to lean on each other. Many of us are looking for ways to help, but may just not know how.

Have a great Saturday! I’m incredibly sleepy and a bit loopy from lack of exercise. I didn’t particularly feel like writing at all today, but am trying to as often as I can. Going to find some sort of yoga class to take online in the basement now!

Working Together

I have a Coronavirus post I wrote yesterday, but first I wanted to share a much shorter sentiment today. I am so thankful that so many people are cooperating and trying their best to stay inside and avoid, not only getting the virus, but spreading it to others.

Every flu season since getting sick with POTS I get the flu shot and wash my hands like crazy to avoid unnecessary complications that could come with the flu. It’s always so freaking annoying when you get together with someone who informs you that they’ve been fighting off a fever or cold all week, and you wonder why the heck they didn’t just stay home and not infect everyone else. This Coronavirus is a small taste of what immunocompromised people* deal with every year in trying to stay healthy.

One of the biggest problems in China and Italy is that people who carried the virus kept going out and contaminating the rest of the community. One person who is carrying the virus can do a heck of a lot of damage if you think about how many people each of the people (s)he affected go contaminate too. If we would all just stay at home for two weeks — the incubation period of the virus — wouldn’t it maybe just stop here?

I honestly am not an expert and not pretending to be. I’ve kept up with some updates from my POTS doctor, as well as followed the local news on Coronavirus cases in our area.

I’m used to seeing people be very nonchalant about getting sick because they’ve never been chronically ill before, but this is a new phenomena. People all across the country are quarantining themselves, only going out to get groceries and the apparently hot commodity that is toilet paper. People who are completely healthy young adults are staying in, not just to avoid the virus themselves, but also to avoid spreading it if they are actually carrying it and show no symptoms. This includes celebrities, politicians, athletes, and people who are in the public eye. My Instagram and Facebook feeds are flooded with posts about being locked up at home and canceled plans until we get through this. People are asking for TV shows to binge, games to play with significant others, and treating this like it’s a big snowstorm in which you can’t leave your house for a few weeks. This is absolutely amazing. I really hope we continue to try to fight this pandemic and end it in America. Stay in, get lots of rest, and snuggle up to a pet, loved one, or fluffy blanket to ride this out with the rest of the country. Here’s to hoping and praying for all of the at-risk people, the amazing doctors and nurses who make a million and one sacrifices for each and every one of us, and everyone else, too. ❤

doc


*The verdict is still out on whether or not Dysautonomia makes me immunocompromised, however POTS patients struggle when they do get sick because our bodies already have a very difficult time finding homeostasis. On a daily basis I try to find the right balance of salt and electrolytes with water so that I’m not constantly dehydrated and battling debilitating headaches that last for days. Ask my husband — when my head hurts I think he has to say something three times to get it to fully process.

I like to write things like this because I also have a bunch of friends now who do have serious chronic illnesses that wouldn’t just cause complications if they got sick — it could be a lot worse. People need to know how their actions affect others, and I don’t think staying in for a few weeks will kill anyone. It could, however, be problematic to those who are at risk.

October – November

Hi! It’s been awhile, but I’ve been pretty busy.

I started my first consistent normal-ish job and am working from home now! I’m doing editing and publishing for a PR company. It’s been really fun, but has also kept me busy, and I still only have a certain amount of time I can spend on a computer without my elbows or neck beginning to hurt. I am making leaps and bounds of progress, though, and am so freaking happy about that! It’s sometimes funny to think about, but I honestly think I’m more thankful for my body now that still is not working the way it should be, than I ever was for my body pre-POTS. Before I got sick I played just about every sport, could run 6 miles no problem, and a half marathon with just a little bit of soreness after. I had a seemingly endless supply of energy and would wake up early, go to bed late, and made time for work and play almost every day. Looking back I don’t know how I didn’t realize how lucky I was. This is just how life works sometimes, though.

I never in a million years thought writing would ever be difficult. Mentally, yes, but physically I should have been able to write for decades before anything became remotely difficult. I have a hard time finding outlets for my feelings sometimes since running has been off the table, and even writing things down can be painful sometimes.

Anyway, I haven’t been able to write for fun very much lately, but there’s not a lot I’ve wanted to share. I’ve become much more private with my life in the past year or two; maybe I’ll explain why one day, but I’m not ready to right now. In the meantime, I am going to get back to my Trader Joe’s Tuesday posts because I have a very deep love for that grocery store. I’ve loved being a stay-at-home dog mom, and think I’ve become a very good cook this year. I figure I share my recipes with my closest friends each week; why not write about it a little too?!

I hope you all had a very nice fall. I’m not doing a very good job coming up with words right now, so I’ll save all of us some time and keep this post short. Have a great Thanksgiving if we don’t talk before then. ❤

Am I Worth Less?

One of the hardest parts about having a chronic illness is feeling like I have less value because I am not contributing as much to the community as my peers. Before I got sick I was working toward pursuing a career in journalism. I took internships, worked part time at a newspaper, and was excited to continue my journey working at Seventeen magazine to hopefully impact young women in a positive way. I have always felt that words are one of the most powerful tools we have, and all of us have a wonderful opportunity to lift others up and make them feel less alone in this big world.

I always dread the question, “So, what do you do?” when I meet someone new. I hate explaining right off the bat, “Well, I got sick when I graduated from college, so I’m trying to get back on my feet and am working on getting my health in line.” Over five years later now I have made leaps and bounds in progress, but I still am figuring out how to manage what I’ve begun to accept as my new normal. Not only is my answer incredibly awkward, but I also just feel so lame not having a cool job or anything to show for my life. I worked so freaking hard before I got sick and have absolutely nothing to show for it anymore. The internship I had at a national news company isn’t relevant anymore, and my job at Seventeen wasn’t able to materialize into what it could have because I couldn’t even walk down the driveway to the mailbox when I first got sick. My illness didn’t just take my body away from me; it took away every sense of normalcy I had ever worked to create. I have nothing to be proud of, and feels like I can’t make an adequate contribution to society anymore. I have relied on others to take care of me, when all I have ever wanted to do was be able to take care of others.

If anyone who had a chronic illness told me they felt worthless, my heart would feel completely broken and I would try as hard as I possibly could to show them what an enormous, ugly lie that was. People shouldn’t feel like they don’t have worth in this world just because their body doesn’t work the way it’s supposed to. Our value does not reside in what we do — or don’t do — for a living, and people can still change lives when their bodies don’t work properly.

Whether or not you are a Christian, I think the Bible has a really beautiful sentiment about our worth as human beings. Psalm 139: 13-14 says, “For You [God] formed my inward parts; You knitted me together in my mother’s womb. I praise You, for I am fearfully and wonderfully made. Wonderful are Your works; my soul knows it very well.” This doesn’t say that we have value because of our job or what we do; it says we were born having value. We are made in God’s image, and He only creates beauty for the world. I think it’s very powerful knowing that even before ever doing anything in the world we have irreplaceable value. Just ask a mother of a newborn baby; she will say that her child means absolutely everything to her, and that is merely for existing, it isn’t anything he has done to make her feel this way.

I am a firm believer that everyone has a purpose in the world and can make a difference in a way that no one else could. Just because you are bedridden or need to be taken care of absolutely does not mean you don’t have value in the world. You have qualities to offer people that make you absolutely irreplaceable in their lives, so we need to stop telling ourselves the lie that we aren’t as valuable because we are different.

On the other hand, I understand the ache that is in your heart for the opportunities you have missed and feeling like some of life has passed you by. I don’t have the resume I would have had if I hadn’t gotten sick, and there are a lot of experiences I missed out on. It’s weird listening to my friends all talk about what they’re doing at work and how comfortable they are there. I still remember working at the magazine’s office like it was yesterday, but I also think that experience was so different because you’re the lowest on the totem pole. Dealing with an illness does teach you what is important in the world, though, and gives amazing perspective people often don’t have until much later on in life. It teaches you to hold on to all the amazing blessings you are given, because sometimes they can be fleeting, and to be thankful for the people closest to you. It teaches lessons of patience, hard work, and resilience. You learn what it’s like to be empathetic with people, rather than just offering sympathy, and you are given an opportunity to be a light for others who go through the exact same things you deal with on an every day basis. Chronic illness builds beautiful warriors who have such important lessons they need to share with the world.

I understand questioning your worth as much as anyone else with a chronic illness, and I am right there with you trying to find my own purpose. The words I wrote on this page make sense to my brain and I know that my life has incredible value, but my heart sometimes has a hard time making the connection. I feel lost in a big world that doesn’t understand me, and I am getting swallowed up in the lies I tell myself at night. Being sick has taught me I’m a fighter, though, and I’m not going to stop searching until I figure out what I’m here for. Deep down I know I have an important role in the world. I just might take a little longer to figure out what it is and that’s okay.

rainbow.png

Strange Things I Miss

Today happens to be a very POTSie day. Luckily, dizzy spells are much fewer and further between, but I hate when they decide to come around with a vengeance. I have been doing a new exercise protocol lately that is supposed to make me feel worse before I feel better, but I am optimistic about how much it could help me in the long run.*

Anyway, I am currently working on a post about what my POTS timeline has looked like, and the improvements I’ve made, as well as the things that are still different in my life post getting sick. It’s been so interesting for me to look back at different things I wrote throughout the years, but is great to have something tangible to look at regarding my life.

Certain things are becoming more normal, and I am pulling off looking like a normal human being like a pro. I have looked pretty normal since getting sick with POTS, since it’s an invisible illness, but I used to have to ask for help much more often. Now I think people around me often forget completely that anything is wrong with me! I hope one day this will be true. Despite being sick for over five years now, I will never stop hoping to get back to complete normalcy. I have a million different things I’m working on for the blog, so today I wanted to just touch on a few things that have been different for me the past half-decade.

1. I can’t enjoy taking showers. Sometimes I hop in a hot shower just because I am in pain and want something to release the tension in my muscles, but for the most part they’re just exhausting. I usually choose between washing my hair or shaving if I’m going to stand the whole time, and have to alternate between the two or rest quite a bit longer after I’m done. Does anyone actually find showers enjoyable? I can’t remember anymore; now they’re just exhausting.

2. I’m not very extroverted anymore. Before I got POTS, I was super extroverted. I was always around people and had an enormous circle of friends. Mentally, I still want to be doing a million things, but my body isn’t up to that. I feel tired and drained from doing too much, so I don’t go out nearly as much as I used to. When I do, it’s usually dinner or dessert with just one or a few friends, rather than hanging out in a giant group. When I first got sick I really couldn’t do anything other than try to stay optimistic, rest, and work as hard as possible to take care of my body so I could hopefully get better one day. I think some of my friends who weren’t around might have felt like I was neglecting our friendship, but in reality I just couldn’t function. I have lost touch with people I sometimes still miss. Getting sick really does show you who is going to be around for the long haul, and makes you see who has unconditional love for your friendship.

3. I miss writing for hours on end. My favorite thing in the world has always been writing, even back in elementary school or high school when writing wasn’t supposed to be fun. I always said English was my favorite subject, even when other kids would say “lunch,” “recess,” or “gym.” I loved learning more about our language and how to write things that people would enjoy reading. It’s difficult for me to sit at a computer and type for hours without feeling it after, and then being in a lot of pain for days after. I am very slowly working on endurance, and hope to be writing more and more.

typewriter.png

4. I miss being a helper. Before I got POTS I was independent and strong. I loved helping other people in any way I could, and was always there to do acts of service. There is nothing I hate more than having to swallow my pride and ask others for help. I’ve had to do that a lot the past few years, and it honestly doesn’t get much easier. I hate inconveniencing others, and I have a really hard time telling people I need something. I am still working on communicating better, but in the meantime I use my writing as an outlet.

5. I wish I could have my old dreams back. I dreamt of living in New York City as a magazine editor, and thought about how many lives I would change through my writing. I wanted to be able to support myself, pay my parents back for school, and afford my own life. I wanted to keep pushing myself and training for another half marathon, and I wanted to collect a million new skills from the new people I’d meet.

I have set new and more realistic goals, and am focusing on getting my body in shape so I can reach higher. Despite my life being much more complicated now, it’s also somehow become more simple. I realize how much I value the people who are in my life, and how important they are compared to everything else in the world. I’ve learned to appreciate the many blessings I do have, and how to live in the moment better. I still feel like I’m looking to find my purpose in the world, but I also trust God now more than ever to have better plans for me than I ever did for myself. I’m just trying to figure out what that is now.


*For any POTSies who are curious, I am doing the Levine protocol.

Scary Statistics

My interest in blogging so much happened a year or two after I got sick with POTS. I’ve always loved to write and have had several different blogs or online journals throughout the years, but this is the first one that is really here to stay.

Despite today being Halloween, it is also the last day of Dysautonomia Awareness month, which is something I haven’t been able to touch on a ton since I was gone for much of October. Instead of writing about my own viewpoint, I am going to post some fun facts from the Dysautonomia International Facebook page — along with a few little comments about some of them. Also, Dysautonomia is an umbrella term for autonomic nervous system disorders, and POTS is my specific disorder.

Screen Shot 2018-10-31 at 10.51.16 AM
All photos credit of DysautonomiaInternational.org. Check it out!

Screen Shot 2018-10-31 at 10.51.32 AM.png

Brain fog is perhaps one of the most frustrating symptoms of Dysautonomia because not only do you feel like you’ve lost a working body, but your brain gets riled up and confused. I am able to manage this one pretty well these days, but can always think better when I am laying down on the couch and have a normal amount of blood pumping to my brain.

Screen Shot 2018-10-31 at 10.51.46 AM

It took me about a week and a half to get a proper POTS diagnosis, mainly because it just took time to get into the doctor who is now my cardiologist. The first doctor who saw me speculated I that had POTS since he could see the drastic changes in heart rate and blood pressure when I changed positions, but we did more extensive testing when I went to a second doctor who is an expert in Dysautonomia. Which leads me to this little fact:

44879717_1862827870482750_3177138977031323648_n.png

No wonder every single person I meet in this area goes to the same doctors office and knows about the little red leather chairs. It’s crazy to me that something as widespread as POTS still has so few people who are considered experts in it. I think this will be changing drastically in the next few years.

Screen Shot 2018-10-31 at 10.52.14 AM.png

45003856_1861720847260119_181229632568164352_n

My biggest issue these days is pain. It fluctuates greatly from day to day or month to month, but the coat hanger pain and arm pain is the worst. It is difficult to sit at a computer and just type as long as I want to because my arms, shoulders, and pecs have lots of trigger points. I am still going to physical therapy, and hope to work my way up to using a computer for a normal amount of time.

44884583_1861720823926788_2951828673470136320_n.png

45146867_1868155123283358_7107759395538206720_n

This makes me FUME. Anyone who tells a person that their chronic illness is in their head clearly has no empathy and has likely been blessed with good health for their entire life. Like, come to any doctor with me and they’ll tell you something is off with my autonomic nervous system. Come to my cardiologist and he’ll tell you every single thing that is going on, and why my body behaves the way it does. I may not always understand why I am having certain symptoms, but there is a logical explanation behind each and every one of them. 

44987628_1861720843926786_9158477829791285248_n.png

45063144_1861720830593454_5242934395760803840_n.png

POTS is not a rare illness, it’s just rarely diagnosed or talked about. I happen to have a more severe case of POTS, however I guarantee if you are friends with a couple hundred people on Facebook that at least a few of them have been effected by it in one way or another. Since the number guesstimating how many people have it is so high (about 1 in 100 people), I speculate many of these POTSies have infrequent fainting spells, some unexplained vertigo, or a little handful of symptoms they are able to tolerate enough that they don’t go searching for answers. As the graphic mentioned earlier, it is only about 25% of people with POTS who are disabled from it.

Whether or not this is something close to your heart (no pun intended!), please take a minute to check out the foundation and educate yourself a little more about Dysautonomia. It will definitely be something you will notice at some point in the future, whether it’s with a friend or an acquaintance. POTS is a very easy thing to test for, as long as a doctor knows what to look for — which can be the hardest part of any chronic illness. Hopefully we will have a cure soon!

Delicate

To say I’m not self-conscious about my chronic illness would be like saying I didn’t care what other people thought of me when I was in high school. Neither is true, but high school was a lot easier because at least everyone else felt the exact same way — and I knew it. Despite feeling self-conscious about the shape of my body or being worried about my future, I knew all of my classmates felt the same way I did. That brought a little glimmer of comfort even in all the confusion.

What’s frustrating about POTS now is that I feel so alone in it. I don’t have a close knit group of friends who are chronically ill, and frankly, that sounds exhausting. We would never be able to make plans with each other because one of us would always be feeling sick, and it would be a whole lot more difficult getting from point “A” to point “B” without having someone who could carry two water bottles or still think clearly even if it gets really hot outside. If I had known in college that one day I wouldn’t be able to carry a Smart Water bottle around for myself I would have been terrified for what my life was going to become.

I freaking hate having a chronic illness. I hate how it makes me feel, I hate that it’s so unpredictable, and perhaps most of all, I hate that I ever have to rely on other people to take care of me. I have always been super-independent, and despite being sick for almost five years now I am nowhere close to being used to all of this. Let that sink in. I have been sick for almost 1/5 of my life now, and I am still not even close to being used to it.

handicapped.png

Every morning I wake up and want to be able to do everything for myself. I want to cook, then clean up the mess in one sitting. I want to be able to drive to meet my friends for lunch without worrying about where they want to go geographically because my arms might hurt terribly from driving too far. I want to have enough energy and strength to go to work, think straight with no interruptions from dizziness or brain fog, and get through an entire day without hurting and becoming stiff — then do it all over again five days in a row. I don’t understand why all of these things that feel like very basic human rights have been taken away from me.

I miss my independence so much I want to scream. I push myself to limits that I know are going to hurt me because I don’t feel like asking for help with little tasks. In my mind, people are going to get annoyed if I keep asking for help with so many seemingly easy things, and it’s not worth losing all of my relationships to feel decent. My brain understands that the people who love me are happy to take care of me, but my heart feels heavy and tight with frustration. I often feel like a burden — not because anyone has told me that I’m one, but because I can’t take care of myself the way I used to. I want to be the one to take care of my parents and repay them for taking care of me for more than just the 18 years they expected to. I want to be able to support myself financially, and I want to feel like I can give acts of service to my loved ones more than I am able to. I want my friends to understand the way that I feel and to know what it’s like to lose every sense of normalcy your body has grown accustomed to — but only for a day so that they can know what my every day is like and why I’m often so tired. I want people be able to feel my frustration so they can really understand how much small things impact me in my day-to-day.

I could write a book on all the things I miss that are really normal. I miss being able to make chocolate chip cookies from scratch all by myself, and I miss doing my own laundry (Seriously!). I miss going shopping without eventually feeling nauseous and dizzy. I think what I miss most is going places by myself. Whether it’s being able to drive into the city to walk around and explore by myself, or taking a mini road trip to see a friend, I wish I could drive myself around without having to rely on loved ones to chauffeur me around. I am 27 years old and want nothing more than to be able to sit in traffic by myself to see my best friend just one a state away whenever I want. I either have to wait until someone can drive me, or have her make the hour-and-a-half trip by herself to come and see me. Both the little and big things about being sick bother me, and I honestly don’t know if I’ll ever fully be used to being different this way. I hate asking people for help, and haven’t gotten a lot better at it over the years. POTS has made me realize that it isn’t always a person who can break your heart. There are other things in life that can take a little piece of it away, too.

sprinkles.png