The Fighter

I’m pretty sure that nearly everyone has a family story about themselves that is someone’s favorite to tell. This might be the go-to story that your relatives tell on special occasions or when they meet your significant other for the first time.

It might start out with, “Let me tell you something about ____, this one time…”

This story tends to give the listener some kind of special insight into the person’s personality; it’s like being told the history of an inside joke or otherwise being given a special nugget of information.

My story is this:

This one time, when I was little, my family moved to Minnesota for the longest 18 months ever (we were not equipped to survive in the frozen tundra- long story, another time, moving on…) and my grandfather came to visit from DC. He and my sister were going to walk to the local convenience store to buy candy.

I wanted to go, but my grandfather said, “You’re too little, Nic.” He didn’t think I would make it all the way to the store. I pouted a bit, and he and my sister left for their walk.

A little while later, as they turned to leave the store, in I walked, dragging my dad behind me. I walked right up to my grandfather, looked him in the eye and said very directly,

“I told you I could do it.”

He seems to remember there was even a foot stomp for emphasis.

I was 3.

The fight or flight response is a funny thing. It’s meant to protect you from sabertooth tigers or mountain lions or whatever else is chasing you according to whichever evolutionary scientist is explaining it.

The point of fight or flight is simplistic. Danger = Huge surge of adrenaline to give you the energy and boost of endurance you need to either fight that mountain lion off or hightail it out of there.

In the 21st century, there are 99 things that are not sabertooth tigers that can trigger your fight or flight. If you encounter these things too often, your fight or flight response can get a little wonky. If you happen to end up with a chronic illness, your fight or flight can end up downright broken.

Mine, unfortunately, happens to be pretty shot.

I’m very rarely not running from a mountain lion, or at least that’s what my insides think is happening. So, evolutionarily speaking, I have 2 options.

Fight…

….Or flight.

When I was 3, I was a fighter. In fact, I was a fighter for a really long time. If something was hard, scary, or couldn’t be done, I was pretty ok with trying it anyway. Ask me about the time I jumped off a roof when I was 15 because everyone else was doing it. (Or don’t, haha, KIDS: DON’T JUMP OFF OF ROOFS JUST BECAUSE EVERYONE ELSE IS DOING IT!)

Sometime around age 16 or 17, though, I got tired. I got worn out. I burned out. My chronic illnesses took over more than they ever had before. Fighting didn’t get me anywhere any more. It didn’t feel worth it. Everything became so flippin’ hard.

So, I started to flee instead.

Flight can look like a lot of things: You say no to invitations. You leave the party the minute you start to feel a little out of sorts (if you even made it there in the first place). You start to believe that “I can’t” is true about everything. Eventually, you just plain all-out avoid stuff.

A decade is a long time to be an avoider. 10 years is a long time to condition yourself to believe that “flee” is the only option available to you any more.

I have been reading the autobiography of Ronda Rousey, the undefeated UFC champion. Ronda is a fighter, and I wanted to know what it is that makes her so.

If you read her book or watch any of her fights, it’s easy to see why she is a champion: No matter whom she fights, Ronda always makes the first move.

She says the first move is the most important because everything that comes after is a series of reactions. Ronda will run right up to her opponent, her challenge, and punch her in the face before that girl even knows the fight started.

This is the absolute opposite of avoidance.

Having a chronic illness has made me an avoider. Every excuse in my mind masquerades as a valid point- they all sound so incredibly legit, and some even might be. I say “No” and “I can’t” a lot.

This is not who I really am though. I do not want to continue to be an avoider. I used to be like Ronda, running right up to the challenges to punch them in the face. I didn’t sit around waiting for my grandfather and sister to bring me candy; I went out and proved them wrong. I’d really like to figure out how to be like that again.

Of course, I have to consider all the Chronic stuff. I want to be a fighter, sure, but not a dummy. It’s not a good idea for me to say, go on roller coasters that have “No Heart Patients” warning signs. I’m not going to hang upside down from a bungee cord anywhere. Jumping off a roof really wasn’t that fun and I am never, ever doing that again.

However, I know that there are things out there that I have been writing off as “I can’t” and “No way” that I might be able to find a way to do and be if I just get creative. Running was one of those things, and I’ve been building up my endurance slowly, slowly for a while now. I fought for that.

The adrenaline is always going to be there, it’s always going to come knocking. It’s my choice to decide if I’m going to open the door to see what happens next, or to hide behind the couch hoping it will go away if it thinks no one is home. (Spoiler alert: It won’t.)

You’ve got a choice too, Chronic friends, and I hope that if you’ve been stuck in “Flight” mode that you’ll join me in trying to find your own inner Fighter again. ❤

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Impossible = I’m possible

Know what’s the worst? Feeling like you can’t do something. Know what’s the best? Doing something you feel like you can’t. My insides have been all out of whack lately, probably due to all my POTSie socializing, traveling, and the fact that the dreaded month of August is upon us. (Side note: I’m sure August is a lovely month in other parts of the world. Here in the DC area, August is the absolute worst month ever. We were built in a swamp (Literally. Who’s bright idea was that?) and it feels like it. Non-Chronic people drop like flies in DC’s August. Even Congress takes a vaca and gets the heck out!) Oh, and I’m moving in a few weeks, that too. It’s just one zip-code over, but it’s moving all the same. I’ve been a little preoccupied with how wonky I feel. I’ve been trying to rest more, change my routine this way and that, in a vain attempt to make the wonky leave. I’ve recently come to the conclusion that the wonky just doesn’t want to budge. This leaves me with 2 choices. #1: I can focus on how everything feels super hard right now and let myself believe that, because I feel like a blender that has been turned on without its top securely in place, I am not able to do, well, anything right now. #2: Or I can go about my day doing what I planned to do, feel super wonky, and then just keep going anyway. This is a picture I took at 7 a.m. today when me and option #2 went out for a run. IMG_2134 Did I feel pretty gross this morning? Yes. It has been stormy and humid the past few days and I had a migraine yesterday that leveled me for the afternoon. Did I feel like I wanted to ignore my alarm and dive back under the covers till noon? Absolutely. I. Love. My. Bed. Yet… Here’s the thing. I run (still doing run/walk intervals, but I call it running cause it is) for me. I’m not running because some doctor told me to. I’m not running for my family, I’m not running for my friends. My dog does not care if I run- except that she gets confused when I leave the house without her (she’s mostly blind so she can’t be a running buddy). I run because I want to, because it makes me feel bright and shiny and happy and like maybe I can have a Life for 5 minutes and not just a Chronic one. So, if I picked option #1 and told myself that all of the things I’ve got going on, all the thoughts rolling around in my brain, that all of that was a perfectly legit reason to roll over and stare at the wall for another hour, the only person I would be disappointing would be myself. Isn’t that the worst kind of disappointment? So I got up. I ran 2 miles. It didn’t take very long. Now it’s over. Do I feel magically better? Not really. I still feel just as blender-ized as I did before. The difference is that somewhere in my brain, a little tally mark was checked off on the side of “Did something when I didn’t want to because it felt hard.” It might not feel any different right now, but those tally marks add up. Those tally marks are what make you better. Every time you keep going and push just enough, you earn one and they build a foundation from which you can be successful, Chronic or not. I’ve got a To-Do list about a mile long. I may not get to everything on it today or even tomorrow. I’ll do my best, keep plugging along. At some point, it will dawn on me that I really am capable of more than I may currently think. One day, I’ll wake up and won’t have such an epic battle of tug-of-war in my mind about what I think I can do. I’ll cash in my tally marks, and I’ll be grateful for days like today where I pushed myself just a pinch harder and earned each one. I hope you have the opportunity to earn some of your own tally marks today, Chronic Friends. What ever it is that feels hard for you, can you push yourself just a bit further than you thought possible? I believe in you and I have faith that you can! ❤

I’m a Zebra now, plus more from the DI Conference.

My POTSie social season continued this past weekend with the Dysautonomia International Medical Conference and Lobby Day, so I made my way to Northern Viriginia and got ready to adsorb Chronic knowledge from incredible doctors from all over the country.

(Side note: I was unable to attend Lobby Day- where a group goes to the Capital to meet with lawmakers and lobby for fundraising- but I heard it went really well!)

It’s funny how Chronics name drop- we name drop hospital centers (Mayo, Vanderbilt, Cleveland Clinic) and specific doctors (Grubb, Raj, Abdallah, Chelimsky). These are our celebrities. There is usually even an embarrassingly long line to get a picture with one of these medical superstars. And if they are signing their textbooks, make sure you’ve got your compression stockings on honey, you’ll be there a while.

Rightly so. These people not only save lives, but they save quality-of-life, which to any Chronic is an almost bigger deal. Our illnesses aren’t going anywhere. We are in it for the long haul, so if a doctor can give us a treatment plan or even just an idea of where to go or a direction to follow, it’s incredible.

This was my second time attending the DI conference, so I was more than ready for the 9 am to 5 pm information overloading. In an effort to prevent causing their guests carpal tunnel syndrome, the organizers of the event helpfully preloaded the powerpoint presentations for every talk onto a USB port attached to our name tags so that we didn’t have to scribble illegible notes or miss important info. This was probably the best idea ever. It also meant that you didn’t have to feel torn about picking and choosing sessions to attend (multiple talks happen at the same time) because at least you have the talking points from each right at your fingertips.

Also because I have been before, I had the opportunity to meet up with some POTSie friends from last year. Have I mentioned lately how much I love events? For whatever reason, I am more high functioning when a social situation lands in my lap- as in, there are a zillion POTSie people to talk within this one place- than if I have to set it up myself or make it happen in a one-on-one situation. It was so fun to catch up with these POTSie women and see what their year had been like- we all had stories to share.

My most favorite moments from the weekend, apart from all the knowledge sharing, were when I met people who were familiar with my blog. HELLO ALL OF YOU WONDERFUL PEOPLE WHO READ MY BLOG THAT I GOT TO MEET THIS WEEKEND! I can’t tell you how cool it was to have people say, “Oh it’s you! I read your blog!” Plus, I got to do that myself (Shout out to Nora over at https://diaryofapotsie.wordpress.com/author/noraburd/ ) #ChronicFanGirl

Top knowledge points from the DI conference:

~If you need someone to explain dysautonomia to you in a way that makes it easy to understand and leaves you wanting more than his 45 minute intro speech, go see Dr. Thomas Chelimsky from Madison, Wisconsin. He is endlessly likeable and knows so much about POTS, especially the co-morbidities that go along with it (i.e. the fact that it’s almost never just POTS by itself). Plus, he works with his equally talented wife, Dr. Gisela Chelimsky who is a pediatric autonomic gastroenterologist, to make sure that all of your symptom needs are met. Fun fact about Dr. C- he was a child actor and played opposite Carey Grant and Audrey Hepburn in the movie Charade in 1963. I found that out by accident when I googled him. I didn’t think I could love him more!

~Best nugget of info from Dr. C? You know how if you stub your toe, it hurts a ton, but if you immediately bang your finger, your finger hurts more and you kind of forget that your toe hurts? This doesn’t happen in the same way for POTSies. Instead, our brain doesn’t let us forget about our stubbed toe no matter how many fingers we bruise. On a grand scale, this can account for the pain component: POTSies keep adding and adding each time something hurts. Non-POTSies forget hurt #1 once hurt #2 happens. Ouchness overload, anyone?

~Studies and patient surveys show that IV Therapy will make you feel better for a few hours but the effects sadly won’t last longer than that. Save your veins for emergencies, friends.

~There are now multiple recognized subtypes of POTS, including Mast Cell Activation (me!), Hyperadrenergic (maybe me!), Neuropathic, Immunologic, and EDS-Hypermobility related (maybe me, again!). Most of these subtypes overlap and the lines between them are blurry. Right now there isn’t much doctors do differently between types, but the fact that they have found patterns that create categories might mean treatment options could vary in the future.

~Want to skip the 22 month waiting list to find out from a geneticist that you have a family-inherited connective tissue disorder known as Ehlers-Danlos (Type III)? Participate in the research study at the conference! A specialist screens for it as part of the project. Sure the geneticist might be more thorough, but for the standard 9 point physical exam known as the Beighton Score, it’s worth a 2 hour wait, filling out a questionnaire, and giving a vial of blood. P.S. I guess I am a Zebra now- or I always was, and now I know it? My mom and sister are too! See updated What’s POTS? in sidebar.

~Saint Bernards snore. Wait, what? Someone had an incredibly adorable, incredibly well-trained, and yet incredibly sleepy service dog who was not all that interested in the session coincidentally about Service Dogs.

~Don’t drink the NormaLyte while the sales rep is standing next to you. Heck, just listen to your POTSie friend J when she says that it is disgusting. Sure, it’s the only electrolyte drink to pack a sodium punch of 4 teaspoons of salt in every serving with no artificial colors or flavorings, but it tastes like it. Do you want to drink 4 teaspoons of salt without a high fructose corn syrup chaser? You may not realize it until you’ve already sipped it, but you do not. Politeness will force you to swallow and you will wish you hadn’t. Smile, mention how that’s quite the acquired taste, and run to the table selling chocolate spoons so that you can rescue your tastebuds from the experience.

~If you tell the photographer that his flash will cause you to become a human blowfish thanks to photosensitivity, he will be friendly and turn it off. No biggie.

~If you are me, you may become a human blowfish anyway, because ugh! *new development*, if I am stressed (even good stressed) I can polymorphous light erupt from just about any kind of lighting. As in, the lights above the sink when I was brushing my teeth. I just wanted minty fresh breath before I went to sit with my friends at dinner! Jeez, universe! This was an unwelcome development, but at least it wasn’t anything an entire ice bucket and sitting in the dark for 1-1/2 hours couldn’t fix! I still made it to the party, just extra-fashionably late.

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That’s NOT makeup. #NoBlush #MastCellActivation

 

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#NoWorries #IceRescue

I could probably keep talking, but I am maxing out on blog space here.

The #1 Most Valuable bit of information I absorbed from the DI Conference? Dysautonomia (POTS is a form of dysautonomia) is ABSOLUTELY NOT a psychosomatic illness. You cannot make this up. Numerous doctors were kind enough to point out in their speeches that there is hard evidence in the form of quantifiable measurements of heart rate, blood pressure, norepinephrine levels, and more that show point blank that there is disorder in your system.

Dr. Blair P. Grubb of Toledo had the best line of the conference when he showed a Holter Monitor report of a kid who flatlined for 3 to 15 seconds each time he passed out. Pointing to the line of asystole, Dr. Grubb said, “Here is his “psychogenic problem.” And then I put a “psychogenic” pacemaker in him and it didn’t happen anymore.”

Nic Note: Pacemakers can be a helpful tool for some frequent fainters, usually those with true Neurocardiogenic Syncope, but not all! As with any treatment option, it varies on an individual basis.

If a doctor says he/she can’t figure it out, FIND ANOTHER DOCTOR. Dysautonomia International has a very helpful map on their website that lists local doctors who are familiar with the condition. If you can, make a point to visit one of the doctors listed as a speaker at the conference. They are the best of the best, and while their waitlists are terrifying (8 months to get into Vanderbilt? 2 years to see Dr. Grubb?) put yourself on a cancellation list and wait for it, because they are the doctors who will change your life for the better!

Chillin’ with the POTSies: Annual Post

July is my busiest month. I like to refer to it as my “POTSie Social Season.”

Every 4th of July since 2009 (except 2013 when I was in Nashville), I have made the short hike to Northern Viriginia to attend the Dysautonomia Youth Network of America (DYNA) Summer Chill.

Essentially, it is a slumber party/summer camp weekend for POTSies.

I love a good party. For whatever reason, I function so much better when something is an “event” than when it is an everyday occurrence. Adrenaline maybe? I don’t know. What I do know is that I love it when a bunch of my Chronic friends are in one place.

This year, the group brought back the much beloved “theme”. We had gone a few years theme-less in an effort for the event to be more casual, but I’m pretty sure most everyone would agree that the theme is the best part. I mean, we had a year where everyone went as a Superhero of their own creation. I wore one of those hats that has cup holders and went as Captain Hydration. It was AWESOME.

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Yes, those are purple compression tights. No, I don’t remember where I got them 😦

This year, the theme was “Dysautonomia Abbey” a play on words referencing Downton Abbey. So you know I was all over that theme, as Downton is my favorite show. I finally had somewhere to wear my “Keep Calm and Ring Carson to Bring Tea” sweatshirt to!

We all dressed up in our 1920s best for a dinner/dance reception on the last night of the weekend, and everyone looked so pretty! You will have to take my word for it because I won’t be posting pictures for privacy reasons, but if you head on over to Facebook and visit the DYNA page, you can see a few photos of the event. #ShamelessPlug

The very creative and talented volunteers who ran the event this year even made a giant “Paper Moon” backdrop, so that we could take 1920s-inspired photos that made us look like we were floating in the night sky. Again, see the DYNA facebook page for photographic evidence of this awesomeness.

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My mom and me hanging off the moon!

We even had dancing lessons which were incredibly comical because 1) we were all girls this year and 2) we were all girls with balance issues. I think I did pretty ok and only stepped on a few toes 🙂

Pre-Dowton Party, we even managed to play some fun games, which included “Crabwalk Soccer” where you chase (using that term lightly- we are POTSies after all) a gigantic soccer ball around while scooting across the floor in crabwalk position, and Human Hungry Hungry Hippos, renamed Famished Famished Frogs in honor of the DYNA mascot (Frogs!). F.F.Frogs was the coolest game ever, yet is strangely hard to describe. Essentially, 4 players lie belly down on wheeled wooden planks that are pushed out into the playing area where they use an upside-down bucket to collect plastic balls. A teammate pulls them back from the playing area by a rope that is attached to the plank so that they can empty their bucket and be pushed out again to refill it. All of this happens super quickly, inciting much laughter and numerous water breaks.

I like the Chill because it’s a social environment where being Chronic does not matter. I’m not the only chick rocking compression stockings; everyone gets up to refill their water or go to the bathroom every half hour; other people get tired and go to bed early/take naps/don’t get up for breakfast too.

On another note, I can usually convince at least 1 or 2 people to go to the gym with me and Chronically Exercise for a little bit which is fun, as I get to see how others adjust their programs to fit their needs and get ideas about my own.

In general, the fact that you do not have to apologize for the fact that you’ve got SPECIAL CIRCUMSTANCES stamped on your forehead is super nice and reassures you that yes, there are people in the world who get you.

It’s also nice that the “healthy” people who attend are just as understanding, because they have seen dysautonomia in their loved one and know how it goes.

Someone at this event invariably suggests that we start a POTSie commune, so that we can live like this all the time, and for 5 minutes everyone thinks it’s the best idea-and then we get brain foggy and can’t remember what we were talking about and laugh and then talk about it again.

So you know, good times 😉

Fainting

Ok, so I’ve been telling anyone and everyone who will listen for 5 minutes about how happy I am to have not fainted for an entire year, a feat that my body has not accomplished since I was 12 (I am now 26). It’s exciting for me, and I think this shows, therefore shaping the responses I get: “That’s so great!” “Congratulations!” “I know how hard you’ve worked for this!”

Thank you, thank you!

However, and this is a big HOWEVER, I’m starting to feel like maybe, just maybe, understanding is getting a bit lost in the sea of excitement. I don’t always feel like people realize that Fainting, especially Chronic Fainting, is a really serious medical problem that comes with some really serious consequences and some seriously heavy emotional baggage.

For instance, I was talking to a friend about how for the past 13 years, I’ve had my own personal chaperone any time I leave the house, in the form of either my mom or my sister. This is a safety thing. As in, after that one time when you passed out in the bathroom at mini golf and no one knew and continued to go about playing without you while you were out for who-knows-how-long, maybe it would be better if you go with your sister so SOMEONE would notice you’d gone missing and perhaps, I don’t know, look for your unconscious body somewhere.

I was trying to explain this to said friend, and how yeah, it’s kind of weird to be 26 and take your 27-year-old sister everywhere (or you know, your mommy), when friend said this:

“But you don’t faint any more so why do you still do that?”

I’m pretty sure I made a Scooby Doo face. Zoinks.1709508-1_62_scooby_doo

I haven’t fainted for a year, sure, but I didn’t know that when it was happening. The universe didn’t send me a postcard that said, “Congratulations, your system will remain conscious for the next 365 consecutive days!” I still spent most every day of 2014 into 2015 thinking, “Am I going to faint now? Is it going to happen here? Is it going to happen there? Is it safe for me to do X when I don’t know if I might faint?”

Hence, the escort.

The other thing is that I don’t know that people in general really understand fainting. Heck, I don’t know that I understand fainting, and it actually happens to me. Funny enough, I’ve personally never seen someone else faint.

Recently I had the honor and privilege of hearing Dr. Blair P. Grubb speak at the Dysautonomia International Convention. Dr. Grubb literally wrote the first (and only?) textbook on fainting, entitled “The Fainting Phenomenon.” He gave a speech at the convention about Syncope (medical term for fainting) and what happens to your body when you lose consciousness.

It was during this talk that I was hit with a little nugget of information, which now that I know it seems super obvious, but that I had not previously realized:

When one faints, one’s heart stops.

If it doesn’t happen to stop altogether, it reaches such a low point (bradycardia) that Dr. Grubb said, “It might as well be asystole.” (Asystole=Flatline=Heart Stops)

Now to be super duper clear, this is not for an extended period of time, it’s less than a minute, and you do not need to be defibrillated or brought back to life or anything like that.

Please don’t freak out.

Truth time: I kind of freaked out.

I mean really, how could I not know this? I asked my mom if she knew this, and she was all, “Of course. What did you think happened?”

After I got done sighing heavily and rolling my eyes (Jeez, Mom!), I thanked her for not enlightening me sooner, because OHMYGOSH if I had know that I was Princess-Bride-Mostly-Dead multiple times a month for 12 years, I feel like I would have needed way more therapy than I already had. (Which was kind of a lot…)

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I feel like maybe the general public doesn’t realize this little (ok HUGE) fact either. Fainting isn’t exactly super common, and so the media is probably the first or only place that people can see it occur. Movies and TV are so unrealistic when it comes to portraying unconsciousness. See, for example, “Snow White.”

When I faint, I am not Snow White or some other dainty fainting lady whose eyelids flutter softly as she gently falls onto a grassy knoll or is caught in the strong arms of the gentleman standing next to her.

Nope. When I faint, it is messy. My body decides to release any and all retained water, so I end up looking like I just took a shower and could ring out my clothes from the sweat. Not to be too graphic, but luckily I’ve never peed myself, but that happens to other people. (I am so, so sorry, Other People.) I turn a horrible shade of pale, which has been described to me as “corpse colored.” My mom has repeatedly told me I look like I’m dead (which makes so much sense to me now, see above epiphany). I’ve occasionally had convulsive episodes, in which one flails about like a fish out of water. I can be unconscious or at least vaguely unresponsive for minutes.

I am not swooning and in need of a fluffy couch and a cocktail.

Fainting is serious shit (pardonez-my-francais).

So yes, I’ve made my mom and/or my sister my human service dog for the last decade (really wishing I looked into an actual service dog when this started; it’s not the best option for me anymore).

And yes, it’s going to take me a while to break out of what has become a habit deeply rooted in a very real and repeatedly reinforced fear.

But seriously, aren’t you super glad that I didn’t put that all on you when we were 15 or even 25? Because I feel like that’s what I would have been doing if I showed up to our outing solo- it’s not like I can call for help/keep myself safe/otherwise be responsible for my person when I am again, mostly dead. Aren’t you glad I didn’t just assume that you would do all that on my behalf without knowing that’s where an evening out might have (ok, probably would have) ended up?

I know that other fainters out there are going to have really differing opinions on this. I know that there are some people who are going to tell me that you can’t live your life in fear, you have to get out there anyway, or somehow try to insinuate that it’s not as big a deal as I think it is, blah blah blah.

I get it. I hear you.

But your situation is not my situation, and vice versa. This started for me when I was 13, was switching schools for high school, was leaving all my friends, was having an exceptional amount of family issues going on, etc. I wasn’t properly diagnosed for 7 years.

Sue me for developing trust issues.

However, and again this is a big HOWEVER. I am 26 now. I have been faint-free for an entire year, and then some. It is, in fact, time to start figuring out how to rewire some previously held beliefs in my brain. I can do that now, but I did need to get to this point first. So bear with me, ok?

I joke that I’m in transition, trying to figure out how to be a person, but that is exactly what it feels like. Patience, friends, I’ll get there. I’m trying really (really, really, really) hard.

In the meantime, thank you for the congratulations. Thank you for the support. Maybe now you have a better sense of why all of this means so, so much to me 🙂

What to do if someone faints:

~Get them into a safe position lying down if they are not already.

~Elevate their legs. This doesn’t have to be drastic, just at least 12 inches/1 foot off the ground.

~Check for breathing and pulse.

~If consciousness is not restored after 1 minute, call emergency personnel.

~Once consciousness is restored, do not rush the person to get up. Keep them lying down for a few minutes to recover.

~NEVER EVER put anything in a person’s mouth while they are unconscious. I am not going to swallow my tongue even if I am convulsing. Don’t try to get me to drink water or eat ice chips- I am unconscious, I can’t swallow right now. If you think the person might vomit, roll them gently onto their side.

~DO NOT slap my face. This happens in movies. It only works in movies. As I regain consciousness, I can feel you slapping my face, but I can’t tell you to stop. The only thing this accomplishes is to make me want to slap you just as soon as my arms work again. Same goes for pouring water on my face. It’s just not a good move, friends.

~Be friendly about it. It doesn’t have to be the end of the world. But it will probably be the end of our outing, so take me home, ok?

The 5 Minute Rule

“You can do anything for 5 minutes.”

I can’t tell you the number of times my mom has said this to me (it’s a lot).

I also can’t tell you the number of times I didn’t believe it (it’s a lot).

But then again, my mom said it, so, you know where this is going, she was right.

At my very worst, I couldn’t go anywhere. I have the misfortune of having the view of my bedroom ceiling imprinted on my brain. I know a lot of you reading this know exactly what that feels like. (For those that don’t: It sucks. Major.)

When I improved to the point where leaving the house once again became possible, I quickly found that “leaving the house” and “going somewhere” were 2 different things.

Sure, I could transport myself from the house to the car.

But could I get out of the car once we got somewhere?

Uh… maybe?

I’ve mentioned/alluded to my wheelchair use before, and for a while it was super helpful. It’s apparently much easier to push somebody already in a wheeled apartaus somewhere than it is to try to pick them up and drag them around.

Or so I’ve heard.

But even using a wheelchair doesn’t make things easy.

When you are a Chronic, everything feels hard. Things that shouldn’t feel hard seem to feel even harder, probably because of the additional mental/emotional weight you add to the situation when you tell yourself, “Oh my gosh why is this so hard when it shouldn’t be???”

Getting out of the car is one of those things.

I know everyone thinks their mom is the best, and I’m no exception. My mom is the best mom for me. You’d probably think she was nuts if she was your mom, but I happen to think she’s pretty fantastic.

Case in point: I would probably still be trying to figure out how to will myself out of the passenger seat if she hadn’t come up with our 5 minute mantra.

“You can do anything for 5 minutes.”

I’ve come to learn that it’s kind of true.

Things that can be accomplished in 5 minutes:

~You can rent a movie. We used to go to Hollywood Video every other day for like, 6 straight months, because that’s all the “outing” I could handle. Now there’s Redbox, but it’s more or less the same principal.

~You can pick up the library books you put on hold. My local library lets you put books on hold online, and when you go to pick them up, they are on a specially marked shelf right by the check out near the door.

~You can buy a bag of gluten-free cookies at the organic food store. *Nic Note: Sometimes lines make grocery store stops last longer than 5 minutes, so going at 10 a.m. on a Wednesday is probably your best bet. For some weird reason, very few people shop at this time.

~You can look through the $1 section at Target. At least in the MD/DC/VA area, the $1 section is right by the entrance and the cash registers, making it a convenient outing. You might come home with stickers and #2 pencils with Hello Kitty on them that you may never use, but 5 minutes is 5 minutes.

~You can find the host of the party, say “Look, I’m here!” hug them, turn around and leave.

I’m sure there are a zillion other things we did in 5 minute increments. It’s kind of amazing what you can do in 5 minutes.

Recently, I’ve been doing better overall, and not fainting has been a huge win for me in the health department. However, fainting isn’t my only issue, so while it’s super nice to be conscious, it doesn’t mean that I’m all better. But I have definitely improved.

Now I get to do things in 15-minute increments.

In the past few days, I’ve had a couple of social engagements (does that make me sound fancy? I like it better than “hang outs” or whatever). Doing social stuff has a unique difficulty when you are Chronic. You have to plan in advance, knowing that you have absolutely no idea if in a week you are going to have enough energy in the evening on a weekend to go do something.

(Of course, I always like to think that the energy fairies will magically appear and give me additional energy just because I made plans, but sadly, either energy fairies really are a myth or they just don’t like me very much.)

Thankfully, I can do anything for 15 minutes.

15 minutes is long enough to go into a restaurant, go to the bathroom, find out your friend’s summer schedule, find out about your other friend’s kid, re-meet someone you’ve only vaguely met before, wait for your other friend who is running late, hug everyone, explain you can’t stay longer, and then hightail it out of there.

It helps that my friends talk fast.

Would I have loved to stay longer?

Oh my gosh, absolutely. If I had my way, they’d be kicking me out at closing time.

This is not about that at all.

This is more about the fact that the tremors start on my insides and if I have ignored them long enough that they start to be visible on my outsides (warning sign: it takes effort to screw the top back on my water bottle), I have a big problem.

I try not to have big problems.

So I stay for 15 minutes. A lot can happen in 15 minutes, and while it might seem like nothing to most people, I am jumping up and down on my insides because you know what?

15 minutes is 3 times as long as 5 minutes.

Yep, I am moving on up.

The Morning Person

Apparently, I have become a morning person.

I’m really not sure when this happened.

Previously, I have been mostly a “Few-Good-Hours-In-the-Afternoon” person. I have never been a night owl. I have night-blindness. It’s complicated.

When I was in high school, I had to get up at 6:45 to get to school on time. This was the absolute latest I could wake up, throw on my uniform (woot woot private school), brush my teeth, and still make it before the dreaded second bell. Putting on my uniform and brushing my teeth were actually my only morning routine. My mom made my lunch and shoved some sort of breakfast in my hand so that her comatose teenaged daughter didn’t have to wake up 10 minutes earlier to figure that out. #Saint.

6:45 a.m. seemed like the most un-godly hour I could ever imagine. There were some girls at school who woke up at 6 a.m. so they could shower and blow dry their hair (WHY) and my you’ve-heard-it-a-million-times joke was to say, “6 o’clock? I didn’t know they made one of those in the morning too!”

You guys. It has been 8 years, but I am now waking up at 6:45 a.m. again.

I can see all you Chronics gasping.

WHY, Nic, WHY.

Um…to run…

WHAT WAS THAT? WE COULDN’T HEAR YOU.

Yes, Chronic readers, I now wake up at a time I had previously referred to as the witching hour of the anti-Christ, VOLUNTARILY.

TO EXERCISE.

I know, I know, I don’t even know who I am any more.

This started out as a practical endeavor. I want to do my run/walk intervals outside because the treadmill is getting old and research says spending time in the early morning outside makes your circadian rhythms balanced and your serotonin levels sing like a Disney princess (ok, so that was not the scientific description, but it should have been).

In order to be outside for any length of time, I have to hide from the sunlight. What better way to do so then to go out way early when Mr. Sun still has sleep in his eyes and can’t find me beneath the shady trees that line the one sidewalk-ed street in my neighborhood?

Let’s be honest, I did not just wake up one day at this time and have it be magic.

I am not actually a Disney princess. My transformation is sadly not yet complete.

I started in half hour increments, waking up earlier and earlier every week. Yes, week, not day, friends. I didn’t want to freak my POTS out with shock. It’s very sensitive, and I have to be super secretive when I make changes. Like la-de-da-de-da, I’m not doing anything differently over here, not me! And then, you know, fake myself out.

Apparently I’m really good at this, because I didn’t even realize I had gotten to the 6:45 mark until I had done it a few times and my sister was like, “WHY are you making SO MUCH noise SO EARLY, I am SLEEPING, it’s still DARK out, I am a TEACHER on SUMMER BREAK, sleep is PRECIOUS, ohmygosh JEEZ.”

As a side effect of me being so efficient and awesome, my dog Suki, who happens to sleep in my mom’s room (#FavoriteDaughter #NotJealous #OkMaybe), thinks that morning comes early for her now too, so you know my sleep deprived mother is also a fan of this new development of mine. #Sarcasm #SheisSOCranky #OkYoureNot #SeriouslyYoureNot! #NoIWontChangeIt #Jeez #Cranky #Truth

I go out for my 30 minutes, then come home, shower, sit down to do my transcribing work, and wow, it’s like 9 a.m.

Which is what time I used to get up at.

This is my favorite part. I love to look at the clock, see a time I used to wake up at, and be like, “Well today, I went run/walking, tweezed my eyebrows, showered, did my first shift of transcribing, and played with the dog, all before I would have even been awake 2 months ago!”

It’s kind of awesome to compare yourself to yourself.

When I get up early and start my day moving around, I get a lot done. Funny thing though, no matter what time I get up, usually from about 4-7 p.m, I’m kind of a zombie person. I’m not sure why, but it happens. Of course, it makes more sense to get up earlier, so that I have more productive time in my day before Zombie Hours hit. What’s frustrating is that Zombie Hours appear to be non-transferable.

Recently, I wanted to go out at 7 p.m. I had plans with friends. This means that I had to function during Zombie Hours in order to get ready and get to where I was going. I tried everything to make myself function in this time zone. I took it easy in terms of activity level, and even took a nap in the hopes of conserving my energy to be able to use later when I wanted it.

This is not how Chronic works, apparently.

There are no roll-over minutes in this data plan, no conservation of energy for on-demand use.

I was only able to stay long enough to hug everyone, and then had to bail, which bummed me out because I would have liked to be fully human for that outing so that I could have stayed longer. No go.

We joked as I was leaving that next time we get together it will be in “Like, the daytime,” which was really just a joke to me, because I’m pretty sure my friends still count 7 p.m. as “Daytime” even though I don’t right now. #JustMe?

My second social outing of the week took place at lunchtime and was slightly more successful. Coincidence that it was earlier in the day? Maybe, maybe not.

I can’t help it, I’ve become a morning person. It’s just the way my body wants to be, even if my mind kind of sort of laughs at it. I even asked on Facebook if I was alone in my morning-person-ness; if I was some sort of running-morning-person-unicorn. It was agreed that I kind of am.

I feel like maybe that’s not such a bad thing to be. 🙂

The Busy Bee

Good news, Chronic readers: I’ve been busy.

Like actual, honest-to-goodness busy.

Busy in an I’ve-had-stuff-to-do kind of way.

If you are a Chronic, you are nodding your head right now. You know there are different kinds of busy.

There is “I’m busy with medical stuff” busy. This is the kind of busy you are when you are in a flare-up and you have 22 medical appointments in 5 days while you simultaneously change 12 of your medications. This is a no-good-very-bad-kind of busy. Nobody wants to be medical stuff busy, but we will probably spend 75-95% of our Chronic life being it, just ’cause.

There is “I’d love to, but I’m busy, so I can’t go out tonight” busy, which may or may not be a real busy, depending on if you are dealing with the above-mentioned medical stuff or if you really can’t go because you don’t feel up to it but have said that the last 32 times and don’t want to have to say it again. This kind of busy either means you are taking a nap or… well, ok you’re just taking a nap no matter the circumstances.

There is “I’m busy so I can’t help you with that problem that involves thinking.” Translation: My brain is busy trying to keep me upright/awake/alive and so is otherwise occupied. If I interrupt it to think about your problem, who knows what will happen!

Then, of course, there is “I’m going to just say I’m busy so that people will think I am doing something productive when really I am just staring at the ceiling/wall/out the window because I just can’t get it together to do more than that right now” busy, which is a real thing that happens all the time.

These are Chronic busy’s, and they are 100% legit, but they are not what the general population means when they say, “I’m busy.”

For example, using the above definitions, I have been busy for 13 straight years, with little to no time off from all the busy-ness I was occupied with. In a way, I was that busy, as navigating multiple chronic illnesses has a way of eating up all your free time. And by free time I mean all of your time, because it’s amazing how your schedule magically frees up when your life drastically and severely changes.

However, if a healthy person said to me, “Oh, you’ve been busy? What have you been up to?” I may not actually have a concrete answer. Most people will not understand that “adjusting to my new medication” is a thing that takes energy and effort and doesn’t just happen spontaneously and/or painlessly just because it involves the one minute action of taking a pill. I get that there are an additional 23 hours and 59 minutes in each day, during which time I am processing, ok? It makes one very busy, I promise.

ANYWAY.

Google is kind enough to tell me that the definition of the word busy is “having a great deal to do.” It lists as synonyms “occupied, engaged, involved, employed, working, hard at work.”

So yes, I’ve been all that too, though for a slightly shorter time period much closer to 4 weeks than 13 years. Well, except for that “employed” thing, though I am working on it and consider myself “pre-employed” which is a fancy term I’ve come up with to describe what you are when you are writing and rewriting your resume and have bookmarked every job-finder website known to man.

I have been occupied by studying for my medical transcription final.

I have been engaged in road trips to see family members and go to POTSie conferences.

I have been involved in the reorganization of my living situation (a blog post for a different day, but spoiler alert: I’m moving!).

I have been working/hard at work on building up a tolerance to running/walking outside.

So, yes, Chronic readers, I am busy. And while it is exhausting, it is exhausting in a completely different way than being Chronic busy.

A whole lot of people like to complain about how busy they are, but I find I kind of like it.

I may or may not even jump up and down a tiny, heart-safe, little bit because I get to be busy-busy.

Perhaps it’s time for a new spirit animal?

cute-little-bee