I’m one of almost 60% of Americans on prescription medication. I started taking daily prescriptions at the age of 10 after a summer spent in excruciating and paralyzing stomach pain. I lost 20 lbs in three months refusing to eat for fear of the stomach cramping returning. Medicine is what gave me my life back. I could eat again. I could leave the house again. I could sleep through the night again.
Over the course of the next 13 years, I’ve developed more illnesses and have been put on more medications. Currently, I take 15 pills a day. There are some medications I like more than others–but I am the one that makes the decision about what goes into my body every morning and evening.
Being responsible for putting these powerful chemicals into your body every day teaches you a lot–especially when you do so for a long period of time. These are just a handful of the things that you learn.
There are no quick fixes
If there’s a magic cure-all pill, sign me up. But every medication I’m aware of exists to neutralize the extremes in your life. Whether it’s pain, mood, sleep, whatever, it helps regulate you to a place where you can get some work done.
When I’m in chronic pain with out of control tachycardia and mood swings, there’s no way I can exercise or use the tools I learned in therapy to help me navigate my emotions.
But when I’m on a beta blocker that makes my heart beat a bit more normally and an anti-depressant that makes me feel more like myself, I can get out of bed in the morning, I can get on my exercise bike and I can self-talk my way through stressful situations later.
And speaking of quick, nothing moves quickly in the world of pharmaceuticals. I was handed a prescription once and told, “you’ll probably feel better in about three to four weeks.” Having to wait a month for the potential of feeling better is rough–but it’s something you learn to get used to.
Side effects will annoy you like none other
You will gain weight. You will lose weight. Something weird will happen to your skin–you’ll get acne, or your acne will clear up, or your skin will dry up or maybe you’ll get hives or maybe everything will stay the same. Luck of the draw. You’ll start symptom tracking all the time. Is this a side effect, is this a symptom of the illness I have or is this just being a human being?
The daunting list of side effects at the end of every medication commercial would make anyone think twice about taking something, but there are plenty of meds out there whose only effects are the intended ones. And using the patience you learned from “no such things as quick fixes,” you’ll learn how to find the right medication for your body and your conditions.
You will bargain with your doctor
Sometimes you’ll agree to try medication you don’t want to take for the purpose of “gathering data.” You and your doctor will engage in a dialogue about what you both believe is best. You might hate the medication you’re on, but you take it for a while because you want to prove it’s not right for you.
This is a part of the scientific process. This is a part of having a working relationship with your doctor, if you’re lucky. If you give a little, they’ll give a little.
You will get really excited shopping for pill containers
You’ll have favorite pill containers. They’re reliable, they don’t pop open when they shouldn’t and they’re the right size, especially for travel and for your nightstand or whatever.
You’ll lose your favorite one day. It’ll be devastating. You’ll grieve. And one day, you’ll find an exact replica in a store. You’ll buy it in bulk, you never want to relive the same pain of losing it again. But in the time where you didn’t have your Beloved Pill Container, you learned that there are a few cool options out there. You became a pill container connoisseur. You like having a variety, and it’s not like they go unused.
You’re obsessed. But it’s OK, because at least you always make good use of them.
Setting up your pills every week feels like it takes longer and longer
You’ve been doing this every week, and even though you have a method down, whether it’s by alphabet or by class of medicine or by doctor or by color or by WHATEVER, it feels like it takes longer every week. WHY does putting pills into compartments take so long?
There’s no good answer. It’s a time vacuum. But take the time to do it right, or else there are dire consequences.
Everyone has an opinion that needs sharing, NOW
On the topic of medication, everyone is suddenly a doctor, holistic healer, pharmacist and a politician. They can’t pronounce what you take or what illness you have but they have a million and six opinions they want to shove down your throat instead of that pill. Because God forbid you practice autonomy over that body of yours! Don’t you know that rat poison tablet created by Big Pharma is all a part of a scheme to give you cancer and destroy the palm trees in the rainforest?
I’ve heard it all before, I’ve heard it from people I’ve just met who have seen my pill case, I’ve heard it from my friends’ parents and even my high school guidance counselor as a teenager. But their opinions don’t matter. I much prefer those of my doctors.
If you go through withdrawal, you’ll be filled with understanding and empathy for individuals in all kinds of circumstances
Despite your dutiful planning and organizing of medication, one day, you will screw up and run out. And you’ll call your doctor and they’ll be out of the office and won’t call in a refill for you until they can see you next, or all of the pharmacies in the area will be out of your medication and can’t get you a refill until Tuesday… and so on. At some point in your life, you WILL go through withdrawal, and it WILL suck.
Withdrawal is different for different types of medications, but the underlying warning for all of them is this: even though it’ll happen to everyone at some point, avoid it at all costs. It sucks. It’s scary, it’s painful, it’s messy. You will treat the people you care about the most how you feel (like garbage), and you will spend the days after praying that they love you enough to forgive you. But because they love you, they probably will. And they’ll encourage you and help you to get your pills organized.
You get to know the staff at your local pharmacy
Because sometimes you want to go where everybody knows your name, birthday and copays.
You will become acquainted with the taste of dissolving pills
There’s always that one medication that dissolves a little too quickly, or maybe you’ll have an incident where you accidentally bite down on a pill forgetting it’s in your mouth and thinking it’s a mint.
You’ll never make that mistake again because the taste of that horror will never leave your memory. Words can’t do it justice.
People will ask to buy your meds
Special shout out to everyone on ADHD medication: this one happens to you a lot.
People will find out what you take and and try to buy it off of you. They think a prescription for Adderall or Focalin or whatever it is they want entitles you to a never-ending supply of what you’re on. That, or they think that skipping a day won’t mess you up. (Spoiler alert for anyone not in the know: skipping your meds will mess you up, BIG TIME.) They don’t understand what you go through with your illnesses, they don’t understand the purpose of medication: to level the playing field to your well counterparts.
You know this truth, but not everyone else does: medication is supposed to give you back what illness has taken, not elevate you above others or give you a cheap high.
Your day doesn’t start or end without your meds
You start and end your day where your medication is. If you keep it with you at all times, you have some freedom. But if your meds are at home, you have to be at home. There are no surprise sleepovers without your pills. Staying out late gets hard because maybe the meds you had to take a 10 PM make you beyond drowsy.
It’s not all bad though, because it provides structure. Take your meds, eat breakfast. Take your meds, get in bed, go to sleep. Those are the bookends of your day. Consistency gives your balance where it might not otherwise exist.
Everything about dysautonomia sucks, plain and simple. But brain fog is one of the worst aspects because it distorts your reality. What can you rely on when you can’t rely on your thinking?
I underwent a new treatment for my depression recently (I’ll write all about it soon). Since treatment, I’ve had several moments of striking clear and vivid thinking that have shown me how I’ve been wandering around in varying degrees of brain fog for years, whether it be from dysautonomia or depression.
While I can’t discern whether my brain fog is from dysautonomia or depression at any given moment, the fact is, I have it. Until you’ve experienced the unreliability of your thinking, you probably won’t get it. But I want to help you try.
Brain fog is when you have read the same sentence five times and it still doesn’t make sense. You think about how to break the sentence down so you can comprehend it. You look at each word individually. You see them all separately. You can read each word just fine, but you can’t string them together. You work on putting together a couple of words—maybe “they went” and “the car” but your brain can’t put the pieces together. It’s not working. This post is unreadable when brain fog is present.
Brain fog is when you learn someone’s face and name and forget them both instantly. The details of the conversation you’re having fade away. You try to catch up on what they’re saying and what they look like as they talk, even as you study their face. They ask you something. Wait, what? Who are you? What is this?
Brain fog is when you say something and immediately pause, look at someone, and ask “what did I just say?” because you have no idea what words just came out of your mouth. Hopefully, it’s something very similar to what you intended. Sometimes, you don’t even remember what you were trying to say.
Brain fog is when you are asked a question, you think hard about the answer, you open your mouth and the answer disappears. You pause, you try to speak as though that will bring the answer back and ask them to repeat the question. You try to think. Nothing. Blank. Where did it go? Where did the thoughts go?
Brain fog is when you can’t remember what you did that day. You know you did something. You must have done something. But there’s nothing to be remembered. What happened?
Brain fog makes you doubt your intelligence. You know in your heart that you know things but your brain is actively betraying you. You can’t even take the steps to calmly self-talk your way out of this because the fog is too thick—you can’t remind yourself of your strengths and your accomplishments because no thoughts are getting through. All of them are getting lost. You can form some sentences, but not others. Why is this so hard? You must be stupid, you decide. That’s the only logical explanation your brain will let you come up with.
Sometimes brain fog lasts a few minutes. Sometimes an hour. And sometimes it lasts days. You do everything you can to break through the haze. You drink lots of water. You exercise. You get eight hours of sleep. You eat healthy meals. You can think perfectly fine sometimes but when you try to talk, you’re totally tongue tied.
Thank every higher power for those few moments of levity when brain fog is funny—the good days when the world isn’t so heavy and being tongue tied is hilarious and not finding the right words isn’t frustrating because there’s no rush to express yourself—there’s plenty of time. Those days don’t come by often, but they help get you by.
For months, I haven’t been able to write. I’ve started a dozen posts, I’ve made quick journal entires, I’ve jotted things down on sticky notes, but that’s it.
Sitting down and composing a coherent post, full of ideas relevant to dysautonomia, relevant to my life, relevant to anything—has been impossible.
Life has been four million different types of hectic since the holidays. Acting on things has been HARD. Starting is one horrible, terrible, impossible task. And finishing? UGH? How is anyone supposed to finish anything?
Which is why I just have to bite the bullet amid all the craziness—the chronic illness, the wild of life and even normalcy—and do the damn thing.
It won’t be shiny and perfect like I want it to be. But the first cut is the deepest because of that terrible first pancake and all of those other clichés. Get the first one out of the way and the other ideas will follow. You know all those fun phrases.
Do the damn thing.
It’s not enough to just write the post though.
Write the post. Edit the post. Publish the post.
Do the damn thing.
Add a picture. Tweet the link. Tell a couple of people.
Do the damn thing.
The mantra is relevant to everything.
Do the damn thing—that’s how I (we, everyone) tackle so many things.
It’d be nice to be sunshine and rainbows all the time. It’d be nice to hop out of bed in the morning at 7 or 8, run downstairs, get a bowl of cereal, exercise and start tackling and achieving.
It’s not though. It’s usually a series of do the damn thing. They’re not necessarily the first, ideal choice. But they get you somewhere.
I’m not supposed to, but I hit the snooze button a lot. I usually grab the granola bar I left on my bedside table the night before and eat it while I’m still asleep so it will wake me up.
Do the damn thing.
From that point on, my day varies. It always consists of exercise on my recumbent bike (the time of day varies). I often find myself in doctors’ office waiting rooms.
The daily task difficulty varies. Making a sandwich for lunch? Easy. Watching Stephen Colbert? The easiest!
But going to the grocery store? A challenge. Setting up my medication? More a nuisance than a trial, but it takes a lot of effort. Trying to find my words when my brain is foggy and scrambled? Difficult. Taking the stairs even when it feels like my legs are going to fall off? The worst. Breathing through the pain when it gets to be too much—
Do. The. Damn. Thing.
Clearing the docket makes way for the good. And even the good doesn’t have to be perfection, it just has to be enough to feel better.
The holiday season is all about spending time with the ones you love. And also about spending times with people you don’t know so well but you’re at the same holiday party so you might as well make small talk. Small talk that turns into “so what do you do for school/work?” that awkwardly turns into, “should I explain dysautonomia?”
This is my very short formula for explaining dysautonomia to others. It’s been working out pretty well for me, and hopefully it’ll work well for anyone who needs any help.
Explain your dysautonomia.
My explanation for dysautonomia changes and develops weekly, just as my dysautonomia does. This illness isn’t static, it changes as frequently as I do.
My standard, quick explanation when I’m out and about is:
I have cardiac/neurological condition called dysautonomia where my autonomic nervous system which controls a ton of automatic functions gets very confused. The ANS controls your heart rate, blood pressure, digestion, et cetera. My subtype is called Postural Orthostatic Tachycardia Syndrome, and the most noticeable symptom is that every time I stand up, my heart rate jumps up at least 30 BPM, which is twice what it should. With so many things out of balance in my body, it causes extreme fatigue, brain fog, digestive issues, cardiac problems, body aches, and a ton of other problems.
In writing, it looks like a lot. But when you say it out loud, it’s not that bad. If someone gets bored listening to you explain a very complicated illness in 4-5 sentences, they’re probably going to get bored listening to everything else you have to say.
Feel comfortable with the words that you’re saying–if you feel comfortable using some doctorly words, go for it, but don’t forget who your audience is.
So all of these symptoms are listed, and someone can guess what it means for your life, but help them understand it further. What does it mean to have your heart rate jumping up 30 BPM all the time? What does brain fog mean for you versus someone else?
Because of the dizziness, I have to be very careful every time I stand up and with every step I take.
I have a lot of concentration problems and now have to take a reduced course load at school.
No matter how much I sleep, I’m still fatigued most or all of the time.
I’m on a high salt, high fluid diet in addition to taking several different medications at various times throughout the day.
I have to use a seat in the shower because the hot water aggravates my symptoms.
Make sure the person listening can see themselves in the place of a POTSie (or any other dysautonomiac). If you want to, you can really open up, or you can keep it surface level. It’s all about what feels right for you.
Share your goals and hopes for dysautonomia.
I usually share my “next step” for treatment or my latest update.
I’m trying a new medication and it’s supposed to help increase my blood flow and fatigue.
My new exercise plan includes physical therapy so I’ll get some support there.
… OR, say “I don’t know what’s next.”
I’m a fan of the ever-authentic answer, “I don’t know what’s next, we’re just playing it by ear.”
Leaving things open-ended with your dysautonomia story is almost more true to the spirit of this illness: none of us know where this is going because there is no cure yet, there are no ultimate answers for what to do to treat it beyond hydrate, salt, and exercise.
Above all else, go with what feels right when explaining your story. Share everything or share nothing, as long as you feel good about it.
Happy holidays and happier holiday shopping, my dear followers!
If you’re like me, the whole holiday season gets mixed up because it feels like it starts in October. That means you don’t know when to start buying presents and it gets put off over and over again. If you need to be told like I do, NOW is a good time to start thinking about it. And if you have a loved one with dysautonomia on your shopping list, I’m here to help.
I chose a bunch of fabulous dysautonomia friendly/dysautonomia inspired gifts, but keep in mind, people with dysautonomia have a 99.9% chance of enjoying what all non-NCS, non-POTS, non-AAG, non-every-other-form-of-dysautonomia patients would enjoy. When in doubt, go for what is truly and essentially them. And most of the time, that is Netflix subscriptions, iTunes gift cards, or just cash. I know Emily Post would probably frown upon cash gifts, but she died in 1960, and I’m the one with the blog.
I did not receive any kickbacks for these recommendations but I would totally appreciate them if anyone’s offering.
Shopping reminder: when you use Amazon, shop through smile.amazon.com and select Dysautonomia International as your charity of choice! 6% of your total purchase price will be donated to them at no extra cost to you!
SO, AT LONG LAST, HERE ARE SOME DYSAUTONOMIA INSPIRED HOLIDAY GIFTS.
I Heart Guts plush organs
“I hate your guts” is a pretty different phrase from the original playground insult when you’re saying it to someone with internal organ dysfunctions. But what if you learn to love the things you hate because someone has made them into adorable cartoon stuffed plushes? That’s what artist Wendy Bryan Lazar did, and now we can all make peace with our messed up hearts, brains, colons, you name it because of it.
Bravelets Bracelets for Dysautonomia International
These are some of the world’s cutest bracelets and necklaces and I should know, I spend a lot of time lurking on jewelry websites. We sell them at the Dysautonomia International patient conferences and they’re such a huge hit because they’re simple but bold. Bonus, $10 of every purchase goes to Dysautonomia International!
Keeping your bedroom clean and decorated is hard when you have little to no energy, and calendars are the easiest way to refresh your bedroom decorations: each month, flip the calendar, new artwork. Whether the person you’re shopping for likes to to adorn their walls with inspirational quotes, snarky sayings, or illustrations of animals, there’s something out there for them to keep a smile on their face.
Blankets are the perfect gift. Non-denominational winter holiday? Blankets! New house? Blankets!! Bought a new blanket? MORE BLANKETS!!!
One of the first things that goes away with dysautonomia is your ability to regulate your body temperature, so blankets really are the perfect gift. Some of us are freezing all of the time, some of us are constantly sweaty, and some of us (me) vacillate drastically between the two. It’s good to have blankets on hand.
Here are a few top-rated/reviewed blankets I found online for your convenience:
I take the majority of my medications when I wake up and go to sleep, but I need to carry five prescription medications with me during the day at all times. I’m an average POTS patient, if not on the low side.
Finding the right way to carry meds is critical and takes a lot of trial and error. Some containers work great until they spring open on a trip and you lose half of your meds because they get crushed underneath your laptop.
My favorite container I’ve ever used is a standard pill container inside of a zip holder from Khols. My mom got it for me for Christmas last year and it’s the envy of my fellow chronic illness friends. It’s compact and easy to describe to people when I misplace it and need help finding it.
Novelty pill containers are fun, too! The Container Store is a gold mine of exciting items. When you’re on a ton of medications, you can never have enough pill containers.
A few years ago, publishers finally figured out that adults like coloring, too. Now, it’s a THING and we can take the time to unwind and have mindless fun relaxing, thinking about nothing, and making things that look nice. Everyone deserves some peaceful time.
While you’re at it, throw in some nice colored pencils and maybe some nice markers.
At the Dysautonomia International conferences, doctors had three key pieces of advice for treatment: exercise, add salt to your diet, and drink water. Drink so much water. Drink it until your pee is clear and then drink some more water.
With all of the hydration that goes on, dysautonomia patients need water bottles and lucky for gift givers, there are eighty billion different kinds out there. I recommend going for larger capacity bottles, generally the 32 fl oz bottles, and getting a spout that is protected from the germy elements.
Back to the temperature control thing: people with dysautonomia have none. Especially in our extremities. Bonus, we have a lot of pain, all the time. It’s nice to heat or freeze our joints or necks or bruises or whatever it is that’s in pain.
So give someone a cute one because we’ve had enough of ugly.
Remember, gifts are always about what the recipient would appreciate it. Is it something they want? Is it something they need? Is it something that would make them laugh or smile? Plus you can always take a play from my family’s book: when in doubt, throw in their favorite food.
So happy, happy shopping and happier gift giving! And please share your favorite go-to gifts or the best gifts you’ve ever given/received in the comments!