Two years ago, I told you about my experience with TMS, Transcranial Magnetic Stimulation. I told you how it pulled me out of depression like nothing I’d ever experienced before. How I relapsed, but I was waiting on insurance to approve another round.
Since then, a lot has changed.
In the Fall of 2016, I started a steady pattern of TMS that lasted a little over a year. We tried lots of different patterns, protocols, treatments. My doctor has been incredible, generous, patient, and kind. The technicians at my treatment center have been next level wonderful to me.
And last January, while I wasn’t feeling as fantastic as I did after my first round, we decided to give TMS a break and see how I’d do.
I stabilized. I’ve been steady for months. (Knock on wood, pray we don’t jinx anything.) I stumble a lot, but I keep picking back up. And I firmly believe it’s because of this last year’s work.
I reference TMS ALL the time, and wanted to answer a lot of questions people might have. And even if you don’t, here’s some answers anyway.
sitting pretty getting Thetaburst TMS on the MagVenture machine
What is TMS?
TMS is a type of therapy for treatment resistant depression. It sends magnetic pulses to parts of the brain that control your mood.
As my treatment center, Greenbrook TMS, explains it:
TMS Therapy works by delivering magnetic pulses to specific areas of the brain involved in mood regulation – areas known to be underactive in those diagnosed with MDD. The magnetic pulses stimulate brain cells, thereby improving the brain’s ability to regulate mood.
Does it hurt?
Kind of. Really, it’s more annoying than painful.
It feels like a woodpecker is tapping at your head and trying to get through your skull to get to your brain. It’s frustrating. It sounds weird. But you get to watch TV, so that’s a plus.
The first few sessions leave you a little sore and uncomfortable, but Advil will fix it right up.
I can’t stress enough though how fast you get used to it. At first, I swore up, right, down, left that I’d never be able to withstand that awful machine. By Week Two, I was taking naps during treatment.
What are the side effects?
Scalp discomfort, headache, neck pain.
The only noticeable thing that happens to me during treatment is twitching of the face and hands. I’m an abnormally twitchy patient (any twitching can usually be alleviated by repositioning the magnet, but my TMS techs and I gave up a long time ago because no matter what, I just twitch.)
There is a small risk of seizure with TMS, but those who administer it are trained in how to respond.
So, is this ECT (electroconvulsive therapy)?
ECT uses electrical currents to induce seizures and “restart” your brain or reverse a lot of symptoms of depression. TMS sends magnetic pulses to your brain to stimulate different parts of your brain associated with mood.
They’re VERY different. ECT requires anesthesia and must be done in a hospital under the care of a team of doctors. TMS can be done in doctors’ offices by trained technicians. (Although your initial appointment where measurements for “motor thresholds” are taken are done by doctors.)
You are awake the entire time you have TMS and have full control of your faculties.
Does it work?
For me, yeeeeeeep. And for a lot of people, yeeeeeeep.
How long do you have to get treatment for?
The standard course of treatment is 5 days a week for 6 weeks, and then a few extra visits to taper off and for maintenance.
Your doctor will decide on what “protocol” to give you. I’ve had many protocols… the most standard is probably a 40 minute treatment on one side of the head. You might get a second treatment on the other side for 20 minutes. I’ve had one protocol called “Thetaburst” on a machine called the MagVenture that only lasted about 7 minutes.
It totally depends on the machine, the doctor, and what you’re being treated for—anxiety, depression, both, etc.
Do you have to stop taking your anti-depressants or stop going to therapy?
Nope! I’m still on several of the same medications I was on when I started TMS in January of 2016. Follow the advice of your TMS psychiatrist and your regular psychiatrist and communicate with them.
The most important part of TMS is that you have an aftercare plan. Continue seeing a regular psychiatrist and therapist when you leave, to continue good mental health practices, and the second you notice something is wrong, get right back in to see your TMS physician.
Didn’t you have this and then relapse a bunch?
Yes. And then I went back to TMS.
And it worked again.
When I first started TMS, I was told I had a 70% chance of relapse given my medical predispositions, but a 90% chance of TMS working again. I did it anyway, because honestly, those odds are still pretty good.
I know everyone is looking for the magic thing that works once and works for good, but that might not exist given the nature of what we’re treating. I was watching 60 Minutes, and a psychiatrist, Dr. Charlie Welch, explained it perfectly: “the nature of depression is that it is usually a relapsing illness.”
It’s true. I have relapsed more times than I can count with this illness throughout my life, which is why now that I’ve found the treatment that alleviates pain the best, I’m not letting go.
A lot of medications don’t work on me. It’s always very “guess and check.” But TMS is much more consistent. It keeps working, just like how Cognitive Behavioral Therapy has been steady with me, it just needed something else to boost it.
But how can you say it worked? How do you know it worked? How can it be working if you keep relapsing?
When I relapse, I go into a state where I physically and emotionally cannot function in the world. I withdraw. I stay in my room out of fear, not enjoyment. I don’t engage with my family, my dogs, my friends. I don’t respond to texts, tweets, posts, anything—because just holding myself together and just breathing is too much.
There are varying degrees of relapse for me, but the worst is when I feel too scared to talk to my parents. I know I need help the most when I’m the most afraid to ask for it.
When I’m good, when therapy, medication, everything works? I’m not necessarily jumping off the walls happy (although sometimes I’m laughing hysterically at my own jokes)—but I’m in and a part of the world. I’m running errands. I’m driving myself places. I’m making plans. I’m responding to texts (or forgetting to because I’m actually busy.) I’m doing laundry and making dinner or getting Orange Chicken at Panda Express. I’m procrastinating something and binge watching ER because it’s FUN, not because it’s my only coping mechanism.
When I go from hibernation to living, and living for extended periods of time, that’s how I know TMS is working.
What are the requirements to get TMS?
I can’t speak for all treatment centers and insurance companies, but I had to verify that I’d undergone Cognitive Behavioral Therapy, had tried at least four different medications in the past (try 25+), and my psychiatrist wrote a referral for me.
People with metallic objects in their heads are ineligible for TMS.
And the most important question…
Why do you keep writing about TMS, a depression treatment, on your blog about dysautonomia?
When I was 21, I was supposed to get ECT.
It took me months to come to that decision. It was one of the scariest and hardest decisions I ever made.
When my psychiatrist first told me he wanted me to have ECT, I started hyperventilating, crying and nearly ran out of his office. (I was instantaneously reciting Sylvia Plath while scenes from One Flew Over the Cuckoo’s Nest played in my head. NOT PLEASANT.) My doctor calmed me down, explained what modern day ECT is like, WOW we’ve made progress, and told me he really believed this could change my life for the better.
I spent an entire summer talking with my family and my therapist about the decision—I learned how safe it was, but I also learned the risks, and I finally decided I was ready. That I was going to have it, I was going to get better and finally beat depression.
And then my cardiologist who treats my POTS told me in no uncertain terms I was not to undergo ECT. That he would not be signing off on it. That while it’s incredibly safe for the average person, it was too risky with my POTS. We needed to find something else.
I went back to my psychiatrist. I was broken. I had been so ready for this huge step, and now it was whisked away. For over half of my life, I had tried everything to fix my depression, and now my last option, ECT, had been taken from me.
That’s when we started talking about TMS. It had never been in the picture before because it wasn’t covered by our insurance at the time and the out of pocket cost was $15,000.
At the time of that initial conversation, I was stable. We did everything we could to sustain it, and it lasted about a year. And that’s when we turned to the insurance company, got TMS approved (by the grace of God), and started the process in January of 2016, when I was 23 years old.
Long story short:
Many psychiatrists believe ECT is the most effective way to help patients with severe treatment resistant depression. But for many patients who also suffer from dysautonomia, it’s just not an option.
But TMS *is.*
And it’s a really, really, really good one.
I don’t want to go to my cardiologist.
I can’t remember the last time I saw him.
It’s nothing personal. The farthest thing from it, really. He’s lovely. So is his wife who is another doctor at his practice. They’re kind, spend a lot of time on their patients, and they know what they’re doing. Best in the business.
But I don’t want to go.
I’ve gone too many times.
I am so, so, so burned out on these long appointments with sitting and standing and getting electrodes stuck on me and echocardiograms and surprise stress tests and vasovagal testing that makes me almost faint and worrying that they’ll find out something terrible or that I’ll feel terrible about myself or—
I just don’t want to go. I don’t want to go.
When I started seeing this doctor, I had to go every two weeks. The appointments lasted hours.
They switched to every six weeks. Then every six months.
And then I cancelled an appointment last October and forgot to reschedule and I don’t know how long it’s been and I don’t want to go back.
I’m not feeling great.
I’m out of breath and close to collapsing every night when I climb up all four stories of our house at the end of every day. I’m totally spent when I walk around at Target or go grocery shopping. Something’s wrong with my foot and I’m walking funny—but I don’t think a cardiologist can fix that. Although he’s pretty smart, so maybe he can.
But I also don’t want to give up a precious day off of work to a marathon day of testing. (Dr. A and his practice is thorough above all else.)
I know I need to grow up, be an adult, see my doctor. I know I need to stop acting like a kid.
But it’s really easy for morale to get low with POTS—because there are days where I go from feeling GREAT to feeling like garbage in seconds and that type of whiplash is incredibly discouraging.
That reminder just crushes your mood, your hopes, your everything. And it fuels the “why bother seeing the doctor?” thoughts.
But I have to remember the advice and guidance of my therapist—even if I can’t get some type of cure from my doctor at a visit, every visit is for the purpose of gathering data. Getting more information. Even if we can’t use it now, maybe it can be used in the future. Maybe it can be used for someone else. We’re just tracking things and taking notes.
I scheduled an appointment for the end of the month.
I’m not happy about it, but I’ll be there. Probably with a not-so-happy face on… but I don’t think that’s a requirement for his visits. (If they were, he’d be out of business.)
(If you’re in the same place as I am… I feel you. Doctors’ appointments are such a hassle. Just do your best.)
Happy Rare Disease Week!
This is a tremendously important week to focus on advocating for recognition of rare diseases and the people who live with them, raising awareness of how common they are and how many people live with them, and teaching the public what needs to be done in the research community to eradicate them and/or help individuals live better lives with them. (Whew! What a sentence. Talk about run-ons. Please don’t tell my high school English teachers, they always got on my case about those.)
I whole heartedly support Rare Disease Week and the ultra superstar rockstars of it (lookin’ at you, Sick Chick Shira Strongin)—but I feel like it’s very important for me to use my voice to make some clarifications about the disorders I do live with—and to make sure y’all know, while I’m one of a kind, I’m not very rare.
I’m probably about as rare as these t-shirts (Photo by Diana DiGangi)
There’s a very common misconception that POTS, because it’s not well-known, is a rare disease.
This could not be farther from the truth.
The NIH says a rare disease in the United States is a condition affecting 200,000 or fewer people. According to peer review studies, POTS affects anywhere from 1 to 3 million Americans and according to Mayo Clinic, it can affect up to 1 in 100 teenagers. (Woohoo! I was one of those.)
The funny thing about POTS is that once you learn about it, once you meet someone who has it, you start finding POTSies EVERYWHERE. Immediately after my diagnosis, I found out that a girl I’d known for years was also in the process of getting a diagnosis. I threw myself into the POTS community, and people started sharing stories exactly like that with me. Their friends, their neighbors, friends from school and church, also discovered they had POTS soon after their friends got their diagnoses.
There are a few reasons POTS gets the misnomer of “rare.”
The primary reason is because of the lack of education surrounding POTS and dysautonomia in the physician community. You can always rely on the saying, “POTS is not rare, it’s just rarely diagnosed.”
The diagnostic delay for POTS is still in the ballpark of about six years—although it’s shortening all the time thanks to the efforts of Dysautonomia International. (Rock on, DysIntl!)
But I think there’s a another reason surrounding the fact that POTS carries the mistaken label of “rare.”
In our journeys through chronic illness, we’re often written off as “just another” patient by doctor after doctor.
I know with one of my doctors, I like to smile and say “hey, I’m one of your most complicated patients, right?” while they scribble away on my chart because it brings me comfort in that if my case is somehow special and complex, it validates the pain and suffering I go through. That if my pain was average, I wasn’t as much of a survivor.
I know that’s not true, but it’s a habit of thinking I get sucked into all the time, and I feel like this happens to a lot of us and the doctors we get shuffled around to see.
When the title of “rare” floats around and gets mistakenly applied to POTS, I think a lot of members of our community sometimes like to take it with pride and say, “hey, my journey is rare and unique because my disease is rare and unique!” even if it’s not true about the disease.
I know I wanted to do that at first too—the title of rare is all too appealing! It makes us different and exclusive, and it gives credence to the difficult journeys we’ve gone through.
It’s damaging, though. Because by spreading incorrect information about the illnesses we live with, we damage our credibility as a patient community, and we spread the notion that someone has to have a rare disease to live a unique experience.
I know for a fact that people with rare diseases do not feel that way at all.
And it’s critical that in order to be allies to people in the rare disease community, we respect the truth of our diagnoses and respect their space in our community of chronic illness. Everyone has a place in this community, and we need to respect the space that belongs to every one of us.
Since this blog is called Dysautonothankyou, I’d be remiss if I didn’t mention that there ARE rare forms of dysautonomia—I just happen to have the crazy common POTS. I wanted to list all of the forms of dysautonomia and mention which are common and which are rare—not as a “who’s who” but rather an educational reference.
(Unless stated, all of the following facts and statistics were gathered from Dysautonomia International.)
- Postural Orthostatic Tachycardia Syndrome – not rare – 1 to 3 million
- Neurocardiogenic syncope – not rare – “It occurs relatively often in all age groups, ranging from 15% in children aged under 18 years to 23% in elderly patients aged over 70.” -NIH
- Inappropriate Sinus Tachycardia – not rare – impacts 1.2% of the population
- Pure Autonomic Failure – rare
- Autoimmune Autonomic Ganglionopathy – very rare – approximately 100 Americans diagnosed a year
- Multiple System Atrophy – rare – 350,000 people worldwide
- Autonomic Dysreflexia – not rare
- Baroreflex Failure – rare – AHA Journals
- Cerebral Salt Wasting Syndrome – rare
- Diabetic Autonomic Neuropathy – not rare – estimated 69 million people worldwide (20% of all diabetics)
- Familial Dysautonomia – extremely rare – only 350 people worldwide
- Panayiotopoulos Syndrome – not rare – “13% of children aged 3 to 6 years who have had 1 or more afebrile seizures and 6% of such children in the 1- to 15-year age group.” –AAP Journals
- Reflex Sympathetic Dystrophy (Complex Regional Pain Syndrome) – somewhat rare – up to 200,000 individuals in the United States -RSDSA
Now, in the interest of full disclosure (after I’ve talked about how common I am), I *do* have Ehlers-Danlos Syndrome, which is a rare disease, but my subtype, Hypermobility Type, is one of the most common forms of EDS. (A common rare disease is kind of an oxymoron, I know, but work with me.) The NIH estimates that EDS occurs in at least 1 in 5,000 individuals globally, and EDS Hypermobility type occurs in 1 in 5,000 to 20,000 people.
While this makes me a rare disease patient, EDS doesn’t feel like one of my major illnesses. The three things I focus on every day are my POTS, depression, and anxiety.
Since I don’t always feel like I can hold up that banner of “rare disease patient,” (I need to work on feelings like I can “own” my illnesses), in the mean time I can focus on doing what I can do be a rare disease ally—which to me, means following the blogs and Twitter feeds of leaders of the community, sending some e-mails and making some phone calls to my legislators asking them to support legislation that favors the rare disease community, and doing my best to listen to stories.
Rare Disease Day is February 28, and I hope all of you with rare diseases will share your stories, and everyone who wants to support a great cause will check out some of these resources:
Last Fall, my TMS psychiatrist decided he wanted me to have a sleep study. All of my doctors have been worried about my unrelenting fatigue for quite some time and have tried approaching it from several different angles. He thought, why not get a sleep doctor involved? (Novel idea, I know.)
I met with the sleep doctor and after reviewing the general synopsis of my medical history (she only had fifteen minutes, not five hours), she ordered two sleep studies for me—one overnight, and one consisting of five naps during the day.
She also put me on a new sleep schedule. She agreed that my body does not want to sleep at night like a normal person—it just doesn’t. But we could try dialing it back a little. She wanted me to stop falling asleep to music or TV shows and have everything quiet, lights out, at 2 AM and to wake up at 10 AM.
I dreaded the sleep study for many reasons—I don’t like wires hooked up to me, I don’t like sleeping away from my bed… and I tried to think of reasons to cancel it. But I manned up and showed up for it.
I have no doubt in the world that people have had good experiences with sleep studies—but mine, along with most medical tests, was a thumbs down.
And here’s my breakdown of how it went.
8:45 PM — I arrived, already dressed in pajamas, ready for my sleep study. They welcomed me into my room, a windowless bedroom with a large memory foam mattress, arm chair, and television.
9 PM — The tech had me sit in a chair while she started attaching hooking me up to dozens of wires that all plugged into a little panel (that would later plug into the wall.) She used the stickiest paste known to mankind to attach the electrodes—I’d occasionally get it on my fingers and the only thing that removed it was hand sanitizer and humble pleading with a higher power.
The panel that became another limb for me
If a bunch of electrodes in my hair weren’t enough, they started putting them on my neck and my FACE (and using medical tape to tape them in place), they stuck EKG electrodes on my chest, electrodes on my legs, a microphone next to my mouth, a cannula in my nose, a strap around my chest, and GUYS I WAS FRANKENSTEIN’S MONSTER WITH A MILLION WIRES AND CABLES ATTACHED TO ME, COVERED IN GLUE AND TAPE, AND I WAS NOT HAPPY ABOUT ANY OF IT.
And DON’T get me started on the pulse oximeter.
9:45 PM — The tech told me that the sleep study was supposed to be like any normal night for me. (I don’t think she was aware that a normal night for me consisted of bed time at 2 a.m., doctor’s orders.) She finished hooking me up for the sleep study, turned out the lights, and I was set for the night. I watched TV for a while and then decided to try and sleep.
10:30 PM — I turned on the TV—it was only 10:30, and I was wide awake. I watched an hour of TV and decided I was going to try to fall asleep.
From 10:30 to 12:30, I was wide awake.
I wasn’t just awake, I was that soul-crushing awake where you’re pretending you’re asleep, but in the back of your mind, a voice keeps reminding you, “Heeeeey. Hey, you. Hey. You wish you were asleep so the time would pass quicker but you’re NOT! You’re not asleep, you’re AWAKE.” in that super annoying voice that sounds a lot like that kid you really didn’t like in Freshman P.E. (No? Is it just me who is still haunted by that kid?)
I tried everything—I thought of things my therapist would say when I’d overthink things, I repeated “who cares when I fall asleep?” at least a hundred times, I thought of plots of stories I’d like to write one day, I thought of blog posts I should write… and time kept passing.
I finally decided I needed to just clear my mind and I turned on the TV to clear my mind.
12:45 AM — After 15 minutes, the tech came in and said that because it was a sleep study, it was not time to watch television. If you ever want to feel like a child, just have someone say those words to you. You will feel RIDICULOUS.
I tossed and turned for another hour or so.
8 AM — I was abruptly woken up. With no sunlight and with off-hours, it felt like the middle of the night.
I went to the bathroom, which was awkward as I still had to manage carrying the panel that was attached to me via 20 something electrodes, came back, and a new tech started removing some (but not all) of the wires—because I’d be there all day for the nap study.
I moved from the bed to the chair so I’d stay awake. I watched morning shows—something I haven’t done in ages.
9:30 AM — Nap #1. According to the doctor, I slept during this nap. I’d call her a liar, but she has scientific data that can prove me wrong.
10:00 AM — I watched a lot of Dr. Pimple Popper videos. I was really bored.
11:30 AM — Nap #2. The doctor said I also slept for a few minutes during this nap. I agree with her (and the medical equipment)’s assessments.
12 PM — I wasn’t given anything to eat for breakfast, and while they let me order lunch, there was a mix up and it never got ordered. (UGH.) I tried to distract myself and started sending out distress texts.
No sunlight. No food. There were limited channels on the TV and the Internet wasn’t strong enough to stream Netflix. I was strictly forbidden from napping outside of my designated nap times. This was every millennial’s worst nightmare.
1:30 PM — Nap #3. My lunch from Domino’s had just arrived, but I was forbidden from eating until after the nap.
At this point, the naps felt forced and more like a torture device.
I didn’t sleep.
2 PM — I ate my boneless chicken wings faster than I’ve ever eaten anything. Domino’s never tasted so good.
I also found a stack of granola bars in the kitchenette next to the bathroom, I think they were supposed to offer me one that morning. I stole one, ate it like a bandit, and hid the wrapper in my backpack because I was afraid of getting caught.
3:30 PM — Nap #4.
The routine was old. I laid there, tried to turn off my mind, desperate to sleep, but I was wide awake. I’ve never been so awake in my entire life, despite only sleeping four or five hours the night before.
4 PM — I started researching the outline of the Geneva Convention and started dreaming about going home and showering.
5:30 PM — MY FINAL NAP. I CAN DO THIS!
One of the techs and I made small talk as she hooked me back up and fixed some wires. She asked me if I ever take naps on normal days. “Sometimes,” I said. “You shouldn’t take naps,” she said, and then she left me to take my nap.
6 PM — I was so eager to get out of there. The tech was maybe more eager to get me out of there—the vigor with which she tore medical tape off my face will not soon be forgotten. (RIP, my epidermis.)
My dad was waiting for me in the lobby of the building and I nearly ran downstairs with all of my belongings to get outta there. I was done.
At the review appointment, I was officially diagnosed with Hypersomnia and my doctor gave me a prescription that I’m going to try out to help with the fatigue during the day. (It’s taken a while to get it filled because of insurance issues. Always insurance issues.)
I’m skeptical but optimistic—and ultimately just happy that the sleep study is over and hopefully I don’t have to get hooked up to that many wires ever again.
Happy Holidays! Merry Christmas! Happy Hanukkah! Merry Solstice! Happy Non-Denominational Winter Event!!!
It’s my long awaited holiday gift guide!
Holiday shopping induces a kind of paralysis for me—I want to strike the perfect level of thoughtfulness and utility while finding something really well priced. (I’M SO BROKE IT HURTS.)
I hope I can relieve you of these feelings with my gift guide!
While all of these items range in price from at little as $7 to as much as $150, I want to remind you of this: the best gift you can give someone with dysautonomia is your time and patience. (And maybe throw some $3 fuzzy socks in there or a reusable water bottle. We’ll love it.)
But my point is this: we have to sideline ourselves in life because our bodies don’t cooperate. Health always comes first, even when we want to throw it to the side and just do something fun for once. Please don’t forget us, especially at the holidays.
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!
I’m really excited about this recommendation because this is the first time ever I get to offer you guys a discount exclusively through my blog. (OMG.)
At this year’s Dysautonomia International conference, I got to know Tomas Reyes, who’s the founder of Tramps Hosiery. He founded his company after a loved one developed dysautonomia and needed to wear compression stockings to help with her blood flow. Coming from the world of fashion in New York, Tomas wanted to design something way more fashion forward than the standard medical options available.
We had a ton of really interesting conversations about how dysautonomia and POTS affects life, and their company has been really generous to our community. AND! They’re offering 40% off your purchase (!!!) if you use the code dysautonothankyou!
*Make sure you know your recipient’s size before purchasing! Compression stockings are very tight!*
Chip and salsa bowl
One of my favorite bits of dysautonomia advice came from one of my doctors who said “Walk more. Drink more water. Eat chips and salsa.” to encourage me to get my salt intake up.
I have definitely taken the last piece of advice a little TOO seriously.
If there’s one thing I know about life and food though, no one scoffs when chips and salsa appear—so go ahead and give the person you love an excuse to consume more in their life in a cute bowl.
(Also, everything is more fun in cute bowls.)
If I could live a life of luxury where I could drop $50 on a single candle, I would. (Looking at you, Anthropologie.)
I’m fairly certain that all of my readers are in the same boat as I am, high class candle tastes on a budget, which is why I’m a big fan of holiday scented Glade candles. Their “Tree Lighting Wonder” scent candle smells even better than a Christmas tree and has my house and bedroom smelling so good for once.
It’s an easy win, and it looks really nice, too, so it’s not an insult to give it to someone as a gift.
Throw some candy canes and a couple of these bad boys into a gift bag and bam!, you’ve got yourself a Christmas gift. (The plug-in inserts are really good, too… but giving a plug-in gives a vibe like, “hey your house stinks, get your life together.” Candles are #classy. Take it from me, Emily Post.)
The other plus to Glade candles is that I don’t find their scents overwhelming or overpowering. Obviously, if the person you’re shopping for has Mast Cell Activation Syndrome, they might need to live in a candle free/scent free home, so check with them, and see what their needs are.
A lot of us with dysautonomia suffer from painsomnia—we’re up all night with pain and discomfort and sleep later into the afternoon. This makes the short days and long nights harder, we hardly get any sunlight.
Separately, my depression worsens with the seasons and my doctors have recommended that I use light box therapy for 20 minutes every day.
I have several friends who LOVE light box therapy and thrive on the boost it gives them. For me, it’s a nice buzz while I use it (when I remember to use it… sorry, doctors), but I know it’s a good, science-backed way to offer someone someone who who struggles with the time changes.
My dad bought me a set of Jane and Bleecker slipper socks from CostCo and I am obsessed. They are cozy, have great grips on the bottom, are cute, and fun to wear.
The blood circulation to my feet is always terrible, but it’s always worse in the winter. These stay secure around my leg and don’t fall down.
The ties *did* break off on one foot while I slept (I move around quite a bit when I sleep) but the sock is still tight and snug around my calves without being tied.
My friends have an Amazon Echo at their house and they have it wired up perfectly.
Want to turn on the lights? Tell Alexa, the Amazon assistant, to do it. Want to listen to music? Alexa does it. Need to search for something online? Alexa does it. Want to set a timer, call someone in another room in the house with an Alexa in it, use an app, buy something on Amazon? Alexa does it.
It’s a chronically ill person’s dream come true—all of these commands can be done from the couch.
There are definitely some security concerns to take into consideration, but there are ways to keep it more secure.
Listen. I know this sounds like a joke. And it might be to some of you. Maybe it could be a funny joke gift or White Elephant present.
But this is one of the BEST products that has ever come into my life, and when you have dysautonomia, you probably have digestive problems, and THIS HELPS by changing the way you sit on the toilet! Things just… move better.
Because let’s just be real about what happens in a bathroom sometimes: straining, discomfort, really unpleasant positions… THIS FIXES THAT NONSENSE.
So if the person you’re shopping for has been complaining about digestive problems, this is step one for them.
(Maybe don’t give it to them in front of a big group of people though, unless y’all love bathroom humor and they’re a really good sport.)
I have a growing obsession with family history. This summer I got my ancestry report done by 23 and Me and while there were zero surprises (I’m 100% European. One HUNDRED percent.), it’s really cool to trace how much of what region’s DNA I have, and compare that to my family trees I have through genealogy reports. (Thank you, FamilySearch!)
What I like about 23andMe is that they have an add on you can purchase at any time after your additional kit that will analyze your DNA sample for Health information besides basic ancestry. (And the chronically ill cannot get enough information about Health.)
The Health + Ancestry Kit is currently on sale for $149 (savings of $50). The other main DNA analysis company, Ancestry.com, does not offer a package like this.
You can use my referral code with 23andme!: https://refer.23andme.com/s/shanlinford
Ah, yes. You didn’t think I was going to go another year without mentioning a FitBit, did you? It’s the dream gift for people who love tracking health data!
The most important feature of this particular model (Fitbit Charge 2), is that it tracks Heart Rate, and that’s what everyone with dysautonomia is looking for: checking in on their heart rate while exercising. Or walking. Or sitting. Or breathing.
I also particularly like this model because it can help you track sleep—the number one question I’m asked when I go to any doctor. (“How much are you sleeping?” “I don’t know, a lot?”)
It can also be synced with your phone to show you text and calendar alerts on the display which is such a convenient feature.
If you’re like my family, our favorite Christmas movie is Christmas Vacation. I’ve considered a few times getting my mom a subscription to a Jelly of the Month Club, because like Cousin Eddie says, that’s the gift that keeps on giving.
But even if you’re not like my family, you’ve probably been interested in one of the billion types of subscription boxes out there. They range from samplings of snacks every month to makeup samples to monthly survival boxes for the chronically ill.
Subscriptions to Hulu & Netflix
Do I really need to explain this? There’s so much good stuff to watch. Give the gift of entertainment. (Go watch The Mindy Project on Hulu and The Crown on Netflix. They’re SO good.)
So, how did I do? What did I miss? And what are you asking for this year? Let me know in the comments!
If you’re still looking for ideas, check out my 2016 Gift Guide and my 2015 Gift Guide!
And most importantly,