I’m a rambler when I’m nervous. And when I’m not nervous. When I’m perfectly fine, when I’m happy, when I’m angry, when I’m every emotion, I usually talk.
When someone gives me a question I don’t have a good answer to or don’t want to answer, I still answer. I’ll give them an answer to a related question without addressing the fact that I’m not even answering the thing they inquired about. If I’m slick enough, they won’t even notice.
But maybe now, after this declaration, they will.
Sometimes friends ask me about how I’m doing with POTS—and even though I’m always game to talk about Dysautonomia International and the work they’re doing, or maybe cool new research, or the fact that my arm fell asleep in under 30 seconds last night–I know my friend is kindly asking about my chronic health problem.
And here’s where the real baggage comes in.
chronically wide eyed and vulnerable
When there’s been no progress with POTS, I don’t want to tell them that. I hate that there’s been no changes. I hate that there’s nothing new to report in my health, I hate that sometimes it’s even getting worse, because then I’ll have to explain that yeah, sometimes that just happens, and no, it’s not my fault (even though I occasionally blame myself when I shouldn’t) because I don’t want them to blame me either (even when I know my friends and decent humans would never do that).
I run away from the reality of “chronic”, I run away from the reality of life and I divert their attention.
They ask about POTS, I answer about something else.
Sometimes I answer about the progress I’m making in therapy, how I’m not standing still or regressing. How I’m moving onward, forward; how I’m doing something that they can be proud of—even though the very act of getting through a day with one chronic illness, no less a handful, is something they can be proud of their friend for.
Because the vulnerable side of me feels like if I can’t produce results in one area, I better produce results in the other.
Today is a day where I can see things clearly, and I want to say and reaffirm to myself and to anyone who might struggle like I do at times: please don’t feel like your life has to be strictly results oriented. Making an effort, taking care of yourself, being a kind person matters so much more than producing tangible results in work or in health or in any realm. If you have a chronic illness, leave the results to the doctor. All you’re responsible for is effort, that’s all anyone can ask of you.
I didn’t make any formal resolutions for 2017 on New Year’s Eve, but every year as I get older, I realize how important it is for me to be nicer to myself. I want to treat myself today like I would treat the younger version of myself—protectively and with patience and compassion. I look at my younger self and want to wrap her up and say “it’s going to be OK, just hold on!”
I want to have those same feelings for myself now, and by having those feelings, I think I’ll be able to be more honest with myself and with my friends.
And maybe I’ll get around to answering your questions head on.
Happiest of happy holidays, friends!
The gift giving holidays are rapidly approaching and I’m procrastinating my holiday shopping like nobody’s business. That doesn’t mean I don’t have time to help you guys in your holiday shopping for your loved ones with dysautonomia.
And if nothing here strikes you, check out last year’s guide, because I feel very confident that something will strike you as a good gift.
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!
Terry Cloth Robes
Some people feel invigorated and reenergized from a shower. POTSies are not those people.
Bathing can be beyond exhausting, and since you can’t change that fact, you can give the gift of a comfortable calm down in the form of terry cloth robes. POTSies can sit and dry off in warmth and comfort rather than shiver in the cold in makeshift towel coverings.
I got the pictured Lands End robe for Christmas last year and it’s my favorite robe that I’ve ever had.
Himalayan Salt Lamp
POTSies live on salt, so it’s no surprise that so many of us are intrigued by the possibilities of Himalayan Salt Lamps being helpful. Allegedly, the lamps produce tons of negative ions which are supposed to help oxygen travel our brains more easily, help us feel more alert and even clean the air we breathe.
According to all of the research I’ve done, there’s no basis for the claims that Himalayan Salt Lamps can create negative ions strong enough to produce any of these benefits. That doesn’t mean it isn’t an awesome looking lamp, and that people on high salt diets won’t appreciate having a giant salt rock as a lamp and decoration. For that reason, I still recommend it as a great gift to give. They come in tons of different shapes and sizes.
Swanky Box for Pills & Supplies
Most everyone I know with dysautonomia has a personal pharmacy. Some of us use clear plastic storage boxes, shoe boxes or large trunks if it calls for it. Still, it’s nice to be offered alternatives to our personal pill storage (or even storage options for our other medical supplies, because we got ‘em).
This is the perfect time for a gift buyer to give us the “ooh, pretty!” options we didn’t feel like we could treat ourselves to before.
The Spoon Theory is huge in the chronic illness community—it started as a way for us to explain our limited energy supply in terms of spoons—and has evolved into an identity. The chronically ill are Spoonies, we need more spoons (or energy) in order to get through the day.
A quick way to pay homage to the Spoon Theory for your chronically ill friend is by gifting them a spoon ring—rings made out of old spoons that are great as thumb rings in particular. I’ve had one for about five or six years and have gotten endless compliments on it. Etsy is the best place to find them in my experience—and here are some great ones.
One of the good rules of gift giving is to get someone a gift that they wouldn’t buy themselves. When you’re chronically ill and strapped for cash, you’re not going to spend your limited money buying artwork for your bedroom, no matter how much it improves your morale.
I can’t say what your friend/brother/sister/daughter/son/girlfriend/boyfriend/acquaintance/secretsantaperson will like best in terms of art.
If you’re going with a dysautonomia fighting theme, look for turquoise, ribbons, spoons, zebras if they have EDS. Otherwise, just look for something that looks nice, something that reminds you of the best parts of them.
Hat, Scarf & Gloves
Give me a room full of POTSies. Half will be shivering and half will be sweating. Temperature control does not exist where dysautonomia is concerned and winter does nothing to help matters.
Even though a lot of POTSies run warm (or even sweaty—myself included), if it gets cold where you live, hats, scarves and gloves are the classic gift for everyone, dysautonomia or not. They’re festive, they’re pretty, it’s hard to go wrong.
Also, a common comorbidity with dysautonomia is Raynaud’s Syndrome which leaves peoples’ feet and hands feeling numb or freezing cold due to poor (or truly just garbage) blood flow. So if your friend is constantly rubbing their hands together complaining that they’re freezing, this is your time to shine as a thoughtful gift giver.
Some people with dysautonomia are bed bound. And even the ones who are not bed bound still tend to spend a lot of time in bed or lying flat on their backs because they’re least symptomatic that way.
All of us who have used laptops are familiar with how quickly they go from computers to searing hot irons of white hot burning pain without proper ventilation when sitting on your legs which is why a lap desk is necessary to use a laptop. They’re also great for setting up pills in your room, doing homework and coloring in coloring books (a perennial favorite of humans everywhere.)
Aromatherapy Diffuser & Drops
Essential oils are tricky. There are some companies trying to suggest that their blend of juniperberrycitronellaspruceetcetera is going to help me forgive people if I rub it on pulse points and heart. But I do know for a fact that I feel a little calmer when I take a deep breath and inhale peppermint very deeply.
So with that in mind, that I’m not suggesting that grapefruitpeppermintcinnamongingerspice in water will cure dysautonomia, I’ve heard some nice things about diffusers—if nothing else that they make your loved one’s house smell amazing and that’s a nice gift to give.
Plus, I found a diffuser that looks like a WHALE. If that doesn’t excite you, nothing will.
Headache Essential Oil Roller & Cream
So another thing about aromatherapy. These things (an essential oil rollerball and headache cream) will not make headaches go away. But they help so much and are as important to my routine of treating headaches as ibuprofen and drinking lots of water or consuming caffeine to fight off a headache.
I’ve become a bit of an evangelist about these two products (I don’t get any kickbacks from them, but I’d love to), and while it might seem weird to give as a Christmas gift, I can guarantee you that even though these are things I buy maybe once a year (because yes, they last that long!), I would also love to receive them. They cool your skin on contact and help ease the tension you feel during headaches and migraines. I love them and maybe you should buy a couple for yourself, too.
Miscellaneous dysautonomia themed gifts
And some things I found online that just looked cool
Did I miss anything awesome dysautonomia themed gifts this year? What’s on your wish list or shopping list? Share in the comments!
Seven years ago today, at the age of 16, I had a major POTS episode. But at the time, I didn’t know it was a POTS episode. I was undiagnosed and blamed the whole event on myself, my interpretation of my own laziness, my inability to take care of my body.
My heart rate was sustained at 180+ BPM for close to two hours with a mess of other symptoms (nausea, blurred vision, I was white as a ghost, pain in all of my joints, etc.) and I ended up sleeping on the floor of the bathroom with gastrointestinal problems. My mom tried to take me to the emergency room but I was a headstrong teenager and refused. I reasoned that I was just having a stomach flareup and the tachycardia was a response to me being very out of shape after doing a bit of running around in the heat of summer.
Because for years, those were the things my cardiologists had told me when we asked about my tachycardia.
“You’re fine, you’re just out of shape.”
That night, my mom texted my psychiatrist, the only doctor along with my therapist who believed there might be something else at play besides “harmless” tachycardia. He told my mom to take me to urgent care as soon as possible.
They performed an EKG and they said there appeared to be nothing wrong, but sent me to the hospital where they performed an echocardiogram. Everything was structurally sound. We made appointments with my cardiologist. I didn’t get much help there.
You’re fine, Shannon. Drink more water. Add more salt to your diet. But you’re fine. Nothing’s wrong.
They did a holter monitor a few months later. They never really addressed the tachycardia, the fatigue, the chronic pain, any other symptom. They just referred back to the EKGs and echos. You’re fine, Shannon. You’re fine, you’re fine, you’re fine.
Seven years later, to the day, I just finished up my fourth conference with Dysautonomia International.
For four years, I have now known that I’m not “fine.” My autonomic nervous system is a disaster. Standing up, even for 10 minutes, makes me lightheaded, gives me brain fog, turns my hands bright red and makes my back feel like a twig that might snap into two.
For four years, I have had a new team of cardiologists who believe me. They run EKGs and echocardiograms and holter monitors and even when they come back “fine,” they know that the rest of me isn’t. They know that I navigate a long list of symptoms every day of my life and there’s no saying what comes next symptomatically.
For four years, my psychiatrist and therapist have been able to help me cope and learn to navigate my new normal, my new life with a chronic illness. It’s not easy, it’s not fun, but we now know what we’re dealing with. We know the card we’ve been dealt. We’re no longer in the dark.
I’m so grateful to be here, now, with the resources available to me so I feel less alone. To have friends, support, physicians and information that will keep me going for as long as I have this illness (very possibly the rest of my life.)
I’m had such a lovely weekend surrounded by hundreds of people with this shared experience of dysautonomia–whether it’s the patient or caregiver perspective, we’ve all gone through the journey of “WHAT IS HAPPENING” and have gotten to (or will get to) “OK, we got this.”
It’s not the same as it was seven years ago.
I got a really exciting text message last week.
One of my best friends got free tickets to see Fall Out Boy at her college. I was envious and called her names—that’s how we roll—and then she said “so are you free on Friday?”
I took back all of the names I called her immediately.
I was excited and my 7th grade soul started singing all of my favorite Fall Out Boy songs. Because AAAAAAM I MORE THAN YOU BARGAINED FOR YEEEEEEEEEET?
I told her I had to talk to my mom, which also felt very 7th grade, but it was true—I needed a sounding board for figuring out if I could handle going to a concert. I started going through all of the logistics.
Could I handle the travel?
I would have to travel about two hours to get to my friend’s place. Even if someone drove me there and I could sleep in the car, travel takes a lot out of me. It’s disorienting and draining. There aren’t many positions in a car I can get in to maximize blood flow. I can’t stop and jump up and down every now and then if I need to help get blood moving around to my body.
Could I handle the social stress?
I love my best friends more than anything and my closest friends and I have gotten to the point where we can communicate in grunts and sighs and TV quotes. However, she’s not the only person I’d probably encounter. She has roommates, who are super nice, but I don’t have an established rapport with them. That’s a stressor when you have anxiety, especially that of the social variety.
In addition to that, we’d be at a concert. We’d be two people surrounded by a crowd full of humans. We wouldn’t necessarily have to talk to them, but they’d be all around us. That’s enough to make anyone want to pull inward.
Could I handle a night away from home?
I am the princess from The Princess and the Pea. I wish I could be super chill and easy going, but I am the pickiest person in the world when it comes to beds. I get terrible hip pain when I sleep on any bed that isn’t mine and have to load up on ibuprofen to dull the ache the morning after.
I had to consider if I’d have enough energy over the weekend to handle the pain of sleeping in a bed that wasn’t mine because coping with pain requires a tremendous amount of energy.
(Side note: my friends are angels. They will give up their beds so I can have the comfy ones and sleep on floors for me if their couches aren’t available. I want to cry thinking about it because I am the luckiest.)
Could I handle a concert? (the biggest question)
I haven’t been to a concert in maybe a year.
When I’ve been at my healthiest and most fit, I have thought that concerts were going to be the end of me. It’s a strange dichotomy to be in heaven in the presence of the musicians who are your idols as they performing the songs that are the soundtrack to your favorite memories while your body feels like it’s going into shutdown; but that’s just how it goes. You’re smiling, in awe of how you can be in so much bliss and so much agony at the same time.
Most of the concerts/shows I’ve been to are smaller ones. I’ve been familiar with the venues and have known that they have seating available. They’ve been close to home, close to a safe place to rest. And what comforts me most is that if something happened to me—maybe if I fainted or had an incident—I’d be close to my doctors.
This is where I had to think hardest. I couldn’t even remember the last concert I’d been to. If I went to this particular concert, this would be jumping into a BIG one. I’d be putting a lot of responsibility on my friend to look after me: if someone went wrong, it’d be all on her to take care of me until my parents could get me. I also considered the fact that I might even have to leave her during parts of the show to rest, which is a huge bummer—when you bring a friend, you want to be with them the whole time.
I would be standing for hours. That could mean sweating for hours, aching for hours, cramping for hours. It would turn into a psychological game as most pain does—can you force yourself to keep enduring it? Can you ignore the pain to get through to the fun? Or will the pain win out?
I came to the conclusion that I should stay home. Jumping into this would be too much—currently, I’m not at a good health level to take this type of adventure on. If the circumstances were different—if I didn’t have to travel to the show, maybe I could do it. If it was a band with low key music rather than the upbeat dance-y music that makes everyone want to jump up and down for three hours, maybe I could handle it. But this wasn’t the right one. It wasn’t the right time.
It totally broke my heart, especially the 7th grade heart that will always beat inside me ferociously. But I had to make the decision that was best for my health, even if was a huge bummer.
There will be other shows, there will be other opportunities. But what matters most is I have a super sweet friend who understands why I had to say no and that I can feel good about my decision making process because I know it’s in my best interest.
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.