Keeping up with the POTSies

Before I begin, I’d like to call your attention to the pretty new format of this site. I realized that in order to get back to the first posts, you had to scroll forEVER and that it was really annoying and cross-eyes inducing. Sorry about that, it’s all better now! Also, in case you missed it, the web address is now just www.iamchronicallywell.com, with NO .wordpress included. It’s easier to tell people about this way!

Ok, I promised something completely ridiculous and un-heavy for your Monday reading pleasure so here it goes…

What exactly could be more ridiculous and un-heavy than a bunch of POTSies hanging out in the wilds of <NorthernPartofaSouthernState> for the weekend?

On Wednesday and Thursday of last week, some pretty major thunderstorms rolled through my area, so I was not a happy camper. It was not my idea of a perfect date (see June 27). Headachy and cranky is not the way to go into a weekend-long conference. So I played some Lady Gaga really loud (ok, it wasn’t that loud, but it was loud to my achy-breaky brain) and I shook the woogey-boogeys out because I had to pull myself together(ish).

So, the ridiculous: nobody feels particularly well at this conference. Also, most of our conversations take place on the floor, sometimes lying down with our feet above our heads resting on the wall.

The un-heavy: none of us care!

Finally, finally, after <some amount of time> of waiting, we have found our POTSy soul mates.

There are organized chats and fancy dinners and even a dance (as most of us missed out on school dances- the average POTSie gets diagnosed somewhere between age 11-21). There are trips to the local grocery store, which is probably bigger and better than the grocery store you have at home. Sometimes people get really wild and go to the mall.

But mostly, we sit around and talk about the wonderfully weird and slightly out-of-the-ordinary medical condition that has brought us all here together. And when we get bored of swapping notes on how to exercise when your heart feels like it’s going to explode (it’s best in a recumbent position- woohoo rowing machines!) or what to do if you start to feel woozy in a public place (sit down immediately-even if it’s in a random aisle of Walmart!), we do something really nutty…

We talk about what movies we like and what our dogs’ names are and how that color of nail polish looks super good with that bangin’ dress you’re wearing.

Like they tell us normal people do.

And, if someone starts to feel symptomatic or faints, we simply fill them up with H2O, prop them up against the wall, shrug and continue.

In short, we get to be our own very special kind of normal, and it is fantastic.

This is the 6th year I’ve been a part of this group, and the 5th time I’ve been to this conference. I get referred to (affectionately of course!) as an “old-timer” which does not make me feel nearly as old as I did when <thesweetest14yearoldgirlever> told me that she wasn’t dancing to “Everybody” because she wasn’t familiar with the Backstreet Boys and in fact, she doesn’t even think she was alive when that song was popular. I quickly excused myself to double check for wrinkles and gray hairs in the bathroom mirror. Also to cry a little.

ANYWAY.

I’m an “old-timer” because I’ve been around the POTSy block. I’ve tried nearly every medical intervention, seen every kind of specialist, and have attempted to “make college happen” every which way possible (school is a very popular topic). It makes me feel so wonderful when I can take all that stuff (it’s in italics because I’m not using the word I really want to use there) that I’ve been through and share it with someone else. It makes me feel even more wonderful if my share means that the amount of stuff they have to go through becomes a little less painful. Everyone is trying to figure out how to make their life experiences meaningful in some way, and it’s at conferences like these that the fact that you went through stuff you might not talk about anywhere else gets to mean something, maybe for someone else. That’s pretty awesome.

It’s also pretty awesome when you get to play crab-walk soccer:

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And Giant Jenga:

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*Tiny formality: I picked these two photos because the faces were blurry, to protect POTSy identities. Because, you know, we are really secret agents and I wouldn’t want to blow anyone’s cover =)

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John Green makes me emotional. Deal with it.

I recently devoured, I mean read, The Fault in Our Stars, the wonderful novel by John Green. It’s just been made into a movie, too, which I have yet to see, but would love to. The book was so beautiful, telling Hazel Grace’s story of meeting and falling in love with a boy named Augustus, all while dealing with cancer and the never ending quest to get her questions answered about a favorite book from its reclusive, and slightly mad, author. It’s not a book about cancer, she says at one point. I get that. Hazel wants to be the leading lady in her story. Cancer is something she has to deal with; it isn’t her whole identity. I loved that so much about her character.

There was a lot I admired about this book, and a lot that I was surprised to find that I could relate to. POTS is not fatal, and it’s not that I was comparing my condition to Hazel’s. It was more about the similarities of being a “sick kid”, and of the familiarity of the experiences and situations she describes. Something that really stuck out to me was this:

Starting at the end of page 211 until page 213 (hardback edition), Hazel discusses Maslow’s Hierarchy of Needs:

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Having taken Intro to Psych, I had some vague knowledge of Maslow and his pyramid, but I don’t think I ever paid much attention to it before I read Hazel’s assessment. She says about the hierarchy:

                           Once your needs for food and water are fulfilled, you move up to the next set of needs, security, and then the next and the next, but the important thing is that, according to Maslow, until your physiological needs are satisfied, you don’t even worry about security or social needs, let alone “self actualization,” which is when you start to, like make art and think about morality and quantum physics and stuff.

                           According to Maslow, I was stuck on the second level of the pyramid, unable to feel secure in my health and therefore unable to reach for love and respect and art and whatever else, which is, of course, utter horseshit: The urge to make art or contemplate philosophy does not go away when you are sick. Those urges just become transfigured by illness.

That last bit digs into my brain. She is so right.

Maybe Maslow’s hierarchy works for some people. Maybe it works in a really broad and general sense. But for me and Hazel, it’s all out of whack. We may be stuck in the second level, insecure in our health in our own ways, but we’re not empty inside. Our bodies may be eternally stuck in some form of “survival mode”, but our minds are not. Although my needs may be “transfigured by illness,” they are still alive and well.

I need to be social. I admit I’m not the best at this. I want more than anything, to be a “Yes!” person, to be able to make spontaneous plans (or really, any plans at all), but my illness gets in the way. But being holed up in what I affectionately refer to as my “Hobbit Hole” (read: my house), doesn’t mean I don’t feel the need for other people’s company. I find ways to reach out, namely through the Internet (like right now!) and sending cards and small presents to my friends to let them know I am thinking of them. My health situation might be dead center in my line of vision most days, but on the periphery, I see others. My social circle may be small, but it is made up of such gut-burstingly fantastic people who take my efforts and return them with an “I see you, too.”

I need self-esteem and accomplishments. I’ve had disappointments in this area, I think everyone has. For a long time, I felt that in order to consider myself “accomplished” I needed to finish my bachelor’s degree in college. POTS has made it very clear that this just ain’t happenin’ right now. But that’s not the only way to be accomplished. What a lot of you don’t know is that earlier this year, I wrote a book. Yep, a whole novel. Those 71,109 words mean so much to me, because it means that over the course of 5 months I committed to a project, and completed it. It has a beginning, middle and end. It may not be publishable in its current form, it may not ever reach a stage where it is considered more than a rough draft with lots of potential, but it is printed out, all 271 pages, sitting on my desk, to remind me that I can still be a person. Not just a person, but a person who does stuff, even though I am often dealing with illness-related what-have-you. I’ve even started a second one. I’m just that bold.

I need to be self-actualized. Can we count this blog as my own journey of self awareness and personal growth? Because writing to you each week is leading me to sit down, think about what I want to say and how to say it. How do I share my experiences with you? How can I relate to you in a way that allows you to stand in my compression stockings for the 15 minutes you’re reading this blog? Am I just going to sit here and tell you what I did today, or am I going to also challenge myself to do something bigger and better tomorrow?

For the record, I like to make art and contemplate philosophy (#showoff). I paint, I make crafts, sew and crochet. I write (which I absolutely count as art). One of my favorite books is called “Xmen and Philosophy,” which may seem silly, but it’s easier to visualize complex topics when you insert superheroes into them. Or at least it is for me. I have not one, but TWO friends who actually majored in Philosophy in college, and every once and a while we chitter-chat about things like space and time. You know, for funsies.

I love that John Green made this conversation a part of his book, however how small or passed over it was in relation to all the other wonderful things he brought to life through Hazel Grace. She concludes by saying:

Maslow’s pyramid seemed to imply that I was less human than other people, and most people seemed to agree with him. But not Augustus.

All anyone can hope for in life, Chronic or not, is for it to be filled with Augustuses. People who see that you are a whole, well rounded person. Not <in spite of> or <for a sick person> or <while dealing with____>. Just you. As a whole. As a person.

This is my 9th post. I’ve been writing for just a short 3 weeks, but the love, love, love you are all sending me makes me feel ooey gooey inside. It makes me feel whole. It makes me feel like a person. So I love you, friends new and old, relatives who care, people I’ve never met in far corners of the world, who are all tuning in. My Chronic readers, as Sam S. gets credit for naming you (don’tbesorryforthatjoke!). Thanks for being my Augustuses.

*Sniff*

I promise to write about something completely ridiculous and un-heavy on Monday to make up for what turned into an emotional blubber-fest, at least on my end. John Green has a way of doing that to people.

Seriously. Gosh.

 

The party you have called cannot be reached. Please hang up and try again later.

I put the scissors in the refrigerator.

Again.

They are supposed to go in the drawer next to the fridge, yet I often open the fridge door and go to plop them down next to last night’s leftovers before my brain decides to wake up a pinch and say, “Um, hey Nic? Yeah, what ARE you doing, girl?”

Brain fog.

It’s super annoying.

There is no technical definition for brain fog, because technically, it’s considered one of those murky symptoms that doctors raise their eyebrows at before telling you that you just need more sleep.

I sleep 10-12 hours a night on average.

I don’t need any more, thankyouverymuch.

Also called fibro fog, depending on which Chronic you talk to, brain fog is no joke. Cognitive dysfunction, forgetfulness, it all falls under this heading. It’s naming is spot on because really, when I’m having a good, low symptom day, my mental processing feels like this:

IMG_0333 *Blue skies, smiling at me/nothing but blue skies, do I see!*

And when I’m deep in the thick of a high symptom day (like the last few have been-ew) or a full on “crash” (a period of time of high symptoms, usually referenced when it’s been more than just a week or two of feeling awful), my brain feels like this:

wm-rgp_1641_8739 *If I squint really hard, I can kind of see those trees*

Everything feels slow, like I’m this guy:

sleeping-bear *Why is it so hard to function today?*

This symptom has been in my top-5 for a while now, and I have to say, it’s one of the most exasperating and upsetting. The pre-Chronic Nic was that annoying kid who didn’t have to study for tests because once I learned something, it was up there, locked and loaded for future use. I have always had a habit of collecting really random factoids and storing them in my noggin for great lengths of time, just waiting for the perfect moment to share them. I still do this, but now instead of telling you in one nice succinct sentence that the human head weighs 8 pounds, I’m more likely to say something like, “So I was reading about the human head. It weighs a lot. How much did it say it weighed? Hang on. I just had it. It was more than 5, I know that. But not more than 10, that would be like, too much. They said it in that movie. You know, that one? From the 90’s? With Tom Cruise? Right, Jerry Maguire. That was a good movie. The cute little blond kid said it. And I just read it. Ugh, this is so frustrating. Let me go look. Where did I say I read it? It must have been that other book, because it’s not here. I thought it was right here. Well, whatever. The human head is heavy, that was my point.”

Doesn’t really have the same know-it-all-effect, now does it?

It’s actually taking me a laughably long time to write this post today, because I’m sitting here, thinking, “What’s my point going to be?” and then rereading what I’ve written to make sure it makes sense. P.S. I’m not really sure what my point is yet.

There is of course, medical reason for Brain Fog, often debated, even though doctors tend to roll their eyes at you when you tell them that you are more forgetful than your great-grandma Pearl. For POTSies, it’s been tied to blood flow. If your brain isn’t adequately fed by some supped-up oxygenated red blood cells, it’s not going to fire off signals between neurons very often (yes, I too am surprised I am able to talk neurons in my current non-neuron firing state). If this is true, my brain is Betty White in that Snickers commercial:

betty-white-snickers-ad *You’re not you when you’re hungry*

On the fibromyalgia side, the idea is similar, though it branches out to include the idea that certain parts of the brain are always “ON” (causing too much stimulation which results in widespread pain) and so your brain is too fatigued to go about its daily business, having never sufficiently recharged.

I’m not sure that I care what causes it. It’s kind of the same thing with any symptom- unless it was something that I had control over (which I don’t, 99% of the time, as my conditions negatively affect my autonomic, read: automatic, nervous system), there isn’t much I can do even if I know the cause. A lot of the time you can’t undo the cause. It’s more about what happens once the symptom is already present.

So, what can I do about brain fog when it happens?

If you can’t beat it, join it. Brain fog falls into my personal category of “Go with the Flow of your Body”. If my brain decides to take a mini-vaca for the day (or the week), unfortunately, that means I have to go too. I’ve tried to function through it before, which has resulted in my discussing my medical condition with the wrong Teaching Assistant at school (awkward), freaking out that I’ve locked myself out of the house only to realize a moment later that my key is in my pocket and I meant to lock the door (uncomfortable), and generally getting into disagreements with family members because I swear I said xyz out loud, but maybe I forgot to… Now I just go with it. Today is a foggy day. I will watch television shows whose plot lines I won’t remember (though do the Real Housewives really have a plot?) or read magazines whose information might simply pass through my consciousness (Are jewel tones in this season? Or was that for fall?).

Make lists. It’s best if you make one list and keep it with you. Sometimes I don’t follow my own advice, so I write down what I need to remember on multiple tiny pieces of paper that end up everywhere. And then I find myself pulling them out of my jeans’ pockets at the end of the week when I do laundry- “Oh right! I never wrote back to B’s facebook message!”

Tell someone else what you’re supposed to do today. It’s very helpful when you are telling your mom about how you watched House Hunters International all morning and she says, “Weren’t you supposed to write a blog or something?” Why, yes. Yes, I was.

Avoid the dreaded multi-task. Do one thing. When that thing is over, do another thing. Do not do two things at once. This is how you end up burning dinner, spilling the dog food all over the floor, and dropping the ketchup bottle on your foot. Not the multi-task you were looking to accomplish, that’s for sure.

When all else fails, sleep it off. Maybe you do need more sleep, right now. Turn off the brain that doesn’t want to function. Sometimes it’s all you can do.

In fact, that actually sounds like a wonderful thing to do. Turn off my computer, turn off my brain. It’s just a few minutes shy of 6pm, but I am done with you, Wednesday (it is Wednesday, right?). Nighty night, kids!

*Bloopers: When I first wrote this, I spelled “cannot” in the title as “can not”. Also, when I was just writing the word “spelled” I wrote “spelt”, which for a second I thought could work, and then I remembered that I am not British.