Spring Break

Chronic readers, I have not been feeling well. I didn’t post on Thursday, but I figured I’d feel better by today, Tuesday, and I’d make up for it.

But I really don’t feel better.

Ok, so yeah, what else is new, right?

It’s a tricky thing to try and determine if this particular I don’t feel well is different than your average, everyday, run-of-the-mill I don’t feel well. So my body is trying to be helpful and let me know the difference, mostly by multiplying the yuck times 100 so it’s super obvious that this is most definitely a flare-up.

I haven’t been sleeping. In its quest to adjust to the Springtime change in temperature, my body has decided that extremes are the best way to go. I go to bed at a relatively normal temperature, only to wake up a few hours later so hot my brain feels like it’s boiling, and my skin is covered in an itchy red heat rash. I have a fan, have given up on blankets and sheets, and our house is a normal temperature. But, I have to get up, run washcloths under the cold tap, and put them all over me when I go back to bed. My feet are red and swollen, so I stand for an extra minute on the tile bathroom floor, moving from space to space as the heat transfers from me to the floor, in an effort to find a cool spot. All that standing added to the fact that I don’t take meds every 3 hours at night the way I do during the day means that my heart will start to pound, and so I go back to bed, stare at the ceiling, biofeedback breathing and covered in wet, now lukewarm washcloths, for an hour or so before I can fall fitfully to sleep.

Because of this, I’ve been having trouble getting up in the morning. I have alarms set so that I can get up and eat breakfast and start medicating (every 3 hours with occasional additions, 8am to 9pm, my phone rings every. single. day.) I have medical transcriptionist training and exercise to be doing; projects like transferring home movies to DVD and keeping up with my sewing and blogging all wait for my attention. Suki really, really wants to go out. Like now.

But I don’t want to do any of it. When I tell myself it’s time to sit, my body wants to move around. When I tell myself it’s time to run, my body just wants to crawl back into bed.

All of my days are running into each other, and while I know today is Tuesday, I can’t believe that it is already the 21st of April. I was going to send my friends Easter cards. I have the package on my desk next to my computer with a sticky note that says “WRITE AND SEND THESE” but I never followed my own instructions.

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If I usually send you cards, this was supposed to be in your mailbox 2 weeks ago. Happy Easter!

 

This past weekend, my stomach symptoms were so severe that I lost 3 pounds. I still tried to get to Target in time to buy a $40 Lilly Pulitzer dress, but they were all sold out even though I got there super early. I felt like the universe should have given me that one. I mean, I’m trying to function through the pain and all. #GimmeAChronicBreak

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I should be so Resort Ready.

 

When I am lying in bed staring at my ceiling (#ChronicConfinement), I think a lot. I think how weird it is to be able to feel your own heart, to be able to feel where in your body your blood is moving and where it is not. I think about how I hate that this keeps happening, where I lose chunks of time, days-weeks-months, because of “flare-ups” or symptomatic times. I try to remind myself that it is not as bad as it used to be, that I am still managing to get dressed every day and keep working on my transcribing course even though I now move at a glacial pace. I even managed to keep running, until this weekend when those epic stomach symptoms took over.

Then I think about how I really cannot think about this one more second, and so I think about Val Chmerkovskiy and Dancing with the Stars instead.

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“Of course I’d love to dance with you once you feel up to it!”

 

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I feel like it would be really easy to swap my face with Rumer Willis in this photo…if only I knew how to Photoshop…

 

There is no good way to deal with a flare-up. In the past, I have tried fighting it (bad idea-it always wins), have tried changing all my medications and my whole daytime routine in effort to find the tiny thing that set me off, and so on. None of that is beneficial, which is a HUGE BUMMER.

No, the best thing to do is Nothing. Which is way harder than you think it is.

I’m doing my best to go about my business, and keep on keeping on like everything is normal, and will pick up my pieces as needed as they fall around me. It kind of sucks.

Because of this, I’ve decided to go on Spring Break from blogging. I’ll be back in May, but I’m calling it and taking the end of April off. The hope is that 2 weeks will be enough for my system to regulate and find its new normal.

Again.

Sigh.

#ChronicLife

 

 

 

 

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Alternate titles for this post:

I really hate the Twilight series.

~Or~

Mean Girls can happen anywhere.

Support groups for chronic illness sufferers are funny things. Mostly inhabited by women (as chronic illness affects a disproportionate amount of ladies to men), they are meant to be a cozy cocoon of love and warmth, where you can commiserate with others who are experiencing the same crazy symptoms as you.

Many a teenage girl will wax poetic about how her home-bound status is keeping her from the “everyday” teenage life. She will be so totally bummed that she is missing out, most especially on all those social experiences that everyone tells her it is so important to have. She’ll take to her computer, find a group of similarly afflicted, similarly aged girls, and something funny happens.

All those “normal” social experiences she wished for come true, if only in the slightly removed form of being online.

Lucky her, she gets to deal with cliques, mean girls, and the desperate quest to fit in, all from the comfort of her sick bed.

I was 20 when I joined my first support group. I hadn’t even met with the doctor who would diagnose me correctly yet, but I signed up for a online group that promised to be love and hugs for POTSie kids. And it was, until I realized that the majority of the talkative kids in this group were teenage girls all out on medical leave of absence from their high schools or taking a year off before college.

Something funny about girls is that if enough of us are gathered in one place at one time, whether consciously or subconsciously, we start to arrange a hierarchy of sorts. See Tina Fey’s seminal work Mean Girls for more indepth intellectual discussion on this matter.

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Chronic girls are really no different from non-Chronic girls. We just take more meds.

Universally, we all want to be liked, we all want to be accepted, we all want to be a part of the hive. We kind of accept the fact that there is a queen bee without realizing what’s happening.

For 20-year-old me in this new support group, I wanted nothing more than to make friends. My high school friends had long since stopped talking to me, and my few true sweet friends were off having their own adventures in college. Where I was supposed to be. Instead, I spent my days Facebook chatting with 17-year-olds.

As I was older, I felt I had to try harder to be accepted. These girls had more in common with each other than they did with me. I’ve always kind of been 30 in my head anyway, so I felt doubly self-conscious. I would do whatever it took to convince everyone I was cool but down-to-earth, up on the latest trends, and yet not too desperate.

I was DESPERATE.

Capital letters mean serious business, people.

Enter the Twilight series.

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Stephenie Meyer had just released the last book in the series, and movie number 1 was set to debut any day. I had never heard of the series, and I happen to really not like vampires or anything even slightly related to the horror genre. But everyone was talking about them. And I needed to talk, too.

When I decide something, I am an all-in kind of girl. My mom wheeled me into Costco (#WheelchairDays) and I bought all the books. I read them with one eye closed, not sure if I was cringing more at the gross discussion of what Vampires eat or the obnoxious depiction of a “heroine” (if you could call her that) who really needed to get her butt into a Women’s Studies class, stat.

I didn’t like it.

Oh, but did I talk about it.

Hours on online chat, on the phone, whatever, chat-chat-chatting with sweet doe-eyed girls who thought Robert Pattinson was dreamy and wore t-shirts that extolled their allegiance to #TeamEdward.

I pledged #TeamJacob (whose name I actually just had to google because I couldn’t remember it) if only for the fact that he never led Bella to such anguish that she jumped off cliffs.

I thought that by doing this, pretending to like something I really couldn’t stand, that I was making friends. That, while built on white lies but a whole lot of dedication to a cause, these friendships would last and be real.

Except, there’s always a Mean Girl.

Chronic mean girls are just like non-chronic mean girls in that they feed off attention. In Chronic Girl World, this usually means that this girl will somehow make you believe that she is the sickest, the most worse-off, of you all, so as to always be in need, whether of your Pink Lemonade flavored Gatorade (Right now!) or your agreement that her life sucks most.

I need to take a minute and note that everyone’s chronic experience is different, and I would never, ever, devalue someone else’s chronic journey. However, you know when someone is pushing all limits. You just do.

Mean Girl of this support group didn’t like me. She would talk to me, say nasty things about the other girls, and then when I would try and defend them or rationalize their behavior, she would twist what I said and tell all the other girls distorted versions of what I said. At an in-person weekend gathering of this group, she made me wait for her and one other girl before going into a conference meeting, which made us late, and then only had saved 2 seats (one for her, and one for the other girl), leaving me to sit in the very back by myself as I hadn’t gone in to get a good seat at the start.

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She made fun of my brain fog and insulted my costume for the dress-up dinner, all the while hugging me and telling me how happy she was that we were friends. I later found out that the group of girls I had been talking to so much about that stupid Twilight series had gone to see the movie together and didn’t invite me, even though we had just been talking about it at dinner.

It wasn’t till later in the weekend when Mean Girl threw a plastic beach ball at my head that I had an epiphany.

I am a grown up.

And I do NOT need this shit.

*Nic Note: Sorry for the profanity, but an epiphany is an epiphany.

It may have taken just a little bit longer than I would have liked for this epiphany to occur as chronic illness does tend to slow down your jerk-rejecting reflexes just a bit, but I’m so glad I got there sooner rather than later. I took a giant step back from that support group then, and as it so happened, the group imploded a bit, Mean Girl and her bees left the hive, and at the end of it, the people who actually cared about being supportive in a support group were still around and I started participating again. It is still mostly inhabited by girls younger than me, and while I’m more than happy to be friendly with everyone, I have shifted my focus from trying to be a bee in a hive to being a chronic big sister who pops in for a chat every now and again about what to eat when you realize your digestive system hates most food groups or your skin decides to reject sunlight.

Still, though, I have always longed for a Support Group who actually lives up to their name.

Happily, through the Powers of the Internet and the Magic of the Blogging Community, I was recently invited to join just that.

My new group is made up of a variety of “Spoonies,” chronic people of all walks of life who just want to have a positive support group experience. My support group Mean Girl experience did not occur in a vacuum. Apparently there are a lot of meanies out there, and they aren’t all chronic Vampire-loving teenagers. This new group has rules, which mostly consist of Respect Everyone. Period. We try to find the positive in our life experiences. We celebrate each other and our successes, whatever that means for the day. We are grown-ups and it feels so. flipping. good to have found a tribe. I know that I can be myself, whatever that means, and that this group is going to be ok with it. No more pretending to like stuff that I don’t to try and fit in for me!

And really, darling baby POTSies, Robert Pattison has not been in a successful movie since the Twilight franchise NOT because he has been unfairly typecast as a swoon-worthy undead romantic lead. It’s because he’s not a good actor. He’s just not.

Man, it feels so good to say that out loud!

If you are in a support group that feels less than supportive, there is no need to stay! Chronic connections should make you feel wanted and valued. Don’t let anyone treat you in a way that is less than you deserve. You should never have to change who you are to be accepted, chronic or not. You are a wonderful, beautiful, valid person, Chronic Reader!

Looking for a support group? Start with any national organization for your illness. They might have local chapters or online groups. Facebook can be a wonderful tool, but use caution. Good support groups and support people lift you up, they don’t tear you down. Can’t find one? Be like my lovely friend B and create your own!

 

Stretchhhhh

Muscles are like rubber bands.

That’s what I thought about as I viewed the world slightly upside down as I reached back into downward dog while doing a yoga video this morning.

Some rubber bands are new, fresh, supple. They stretch and bounce back to shape with enviable resiliency.

Then there are some rubber bands that are old, stiff, and breakable, like if you were to try and stretch them around <whatever> they would just snap.

I haven’t done yoga in months.

Can you guess which kind of rubber band I feel like today?

I’ve been preoccupied with fun, active exercise; exercise that makes me feel like I can see the results immediately and am building up an amount of tolerance to activity I’ve never felt before. Run-walking (walking with running intervals), weight lifting, Zumba on my Wii consule.

I forget, as I’m sure a lot of us do, that stretching is a really, really important part of the process of Literal Body Building (in which we Chronics build a body we can live with through exercise and other healthy habits).

It’s not like I don’t stretch.

I mean, I do one of these on each side before I pop on the treadmill.

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And I have a foam roller for rolling out the tightness in my quadriceps muscles afterwards.

(Ok, so yeah, I could use more stretching.)

I have a long history of doing yoga (I thought I was the most enlightened 12 year old ever because I “discovered” yoga and Pilates around the same time Madonna did in the early 2000s), though never particularly hard-core, mostly because of that whole “Postural” part of the postural orthostatic tachycardia syndrome which means when I change my posture I get tachycardia.

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I wish…

 

I’ve always liked it though, and so go back to it often, though usually when I am in a period of not feeling so great and not being able to do much more than a few poses for exercise.

I tend to forget how important stretching is, no matter how I’m feeling.

This week, instead of my usual exercises with free weights on Tuesday/Thursday (I run-walk Monday, Wednesday, Friday, and “active rest”: read vacuum and grocery shop, on the weekends), I decided I needed to substitute yoga. I’ve been reading Runner’s World magazine, and it’s put the fear of tight hamstrings and torn ACL’s in me. I want running to be healthy for me, not a fast forward button to eventual muscle demise.

So, I fired up my yoga DVD, and vinyasa’d my way to inner peace and supple leg muscles.

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Sort of.

Let’s just say my Warrior Pose series would have gotten me a dishonorable discharge from the Warrior Pose Yoga Army if there was one.

Just like run-walking and weight training made me realize there are about 92 muscles that I didn’t know existed in my arms and knees, going back to yoga after an extended break reminded me of another 92 muscles I didn’t quite remember having, who are now pretty cranky that I woke them up and forced them to move.

I am hoping that they get over themselves right quick, because I’d like to go back to that happy place of being able to touch my toes without grimacing.

Personally, I think the nicest thing about yoga is the philosophy behind it. Sure, it’s all well and good to be stretching your body, but what about your mind? I like vinyasa yoga because that it the type where you connect your movement and your breath. Inhale: reach up, exhale: forward bend, etc. It forces you to get in alignment totally. It’s the truest form of balance, when you can breathe and move easily in tandem. It takes me a while to get back to, but I’m always so glad that I do. It makes me feel that as much as I am coaxing my body into being flexible, I’m also coaxing my attitude as well. It’s literal Going-With-The-Flow.

And couldn’t we all use some more of that?

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Do you do yoga, Chronic reader? Have you ever tried? If you are a POTSie with EDS, let me just go ahead and say that yoga might be Dislocation City for you, so please, please use caution if you’ve never tried it before!

Younger

*Nic Note: Sorry I missed posting yesterday! It’s been raining here, and there’s something about rain that makes it feel like it’s raining in my brain, so all of my concrete thoughts sort of get washed away and well… you get it, now it’s Tomorrow. So here: Blog. Go. Read.

TV Land, that wonderful retro network known for playing all-day marathons of I Love Lucy, Gilligan’s Island, and Three’s Company, has recently branched out into creating its own original series. One of these shows is the silly Hot in Cleveland which is responsible for giving Betty White something to do when she is not accepting awards for “Everyone’s Favorite Actress Over 90.” The latest TV Land creation is a frothy little endeavor called Younger.

Sutton Foster, veteran Broadway star and all-around likeable actress (Rest in Peace, Bunheads, you were gone too soon!), plays Liza, a 40-year-old former publishing assistant soon to be divorced from a lying, cheating, gambling husband. Her daughter is spending the year in India for a study abroad program, and in order to pay off her ex-husband’s debts, Liza has to sell her house and reenter the workforce. She moves in with her best friend (Debi Mazar, who should be everyone’s best friend in every show ever) in Brooklyn and sets out to pick up where she left off in the publishing world approximately 15 years ago.

Except, she can’t.

Because New York is ever changing and has seemingly been invaded by Millennials (who are considered to be probably the most obnoxious, age-ist people on the planet- or so I’ve heard…and read…and, well it’s kind of everywhere…sorry on behalf of all of us!), Liza can’t get a job anywhere. She doesn’t understand social media and barely understands the questions and references posed by the 20-somethings interviewing her.

Drowning her sorrows in a bar with her friend later, Liza is hit on by a young tattoo artist who figures that Liza is approximately 26-ish. Liza sorta-kinda blows him off, though the flattery is nice. Back at the loft (we are in Brooklyn, you know) later, Debi Mazar, always the voice of reason, suggests that Liza pretend to be 26 so that she can get a job. Sutton Foster is a perpetually age-less pixie, so if anyone can pull it off, it’s her.

Hilary Duff (whose character, Kelsey, is pretty much “Lizzie Maguire Grows Up”) plays a new friend at the office, who also has no trouble believing Liza is 26. It helps that Liza has essentially stolen her daughter’s identity and explains away the gaps in her media-frenzy knowledge by recounting how she has spent her time since college volunteering in rural India.

This show is adorable, maybe because Sutton Foster is adorable. I happen to be 26, and while I wouldn’t necessarily believe Liza is actually 26 too, I wouldn’t think she was older than 33, tops. In real life, Sutton Foster just turned 40 herself.

What’s funny to me, as I sit watching this show, is how I feel more like 40-year-old Liza than 26-year-old Kelsey. Debi Mazar (who is 50 and incredibly hip, both in real life and as her character) and Hilary Duff (who is 27) are like my personal gurus, teaching me the ways of the mythical “typical” 26-year-old lady. Of course it is all stereotypical (I hope) and exaggerated (I really hope), but it’s still kind of an anthropological study into a culture I feel particularly detached from.

When you have a chronic illness (or other high-stress, atypical life event), your chronological age and your internal age get all screwed up. You age faster in some respects and slower in others. You can feel like you are missing out at the same time that you are really glad that you got to skip <that part>. It’s hard to remember how old you actually are, and it’s hard to describe how old you think you actually feel. For me I feel 80 (I go to bed before 10 and enjoy what I call “Grandmotherly Pursuits” a.k.a. knitting and crocheting), and 15 (it still weirds me out to see my friends driving because some part of me has yet to accept that we are old enough to legally operate motor vehicles), and 40 (I’m so over other people’s judgements), and 12 (sometimes I am not so over other people’s judgements).

I know that all of you non-Chronics out there are going to tell me that at some point everyone feels that way, and that age is just a number and all that, and ok, sure. But I would like you to understand that it’s different when something interrupts your natural growth process. It can make you stuck in one place for a longer period of time than you would “normally” hang out there. It’s one thing to say, “I don’t feel a day over 25,” than to say, “I’m having trouble functioning as a 26 year old because my developmental brain is trapped at 17.”

So there’s that.

Anyway, the point I am trying to make is that this show is fun and you should watch it. You can see it for free on TVLand.com. When you do, I’d love to know your thoughts- if you’re 26-ish, do you feel like the writers get you? If you’re a Chronic who read my above few paragraphs and said, “Thank goodness I’m not the only one who feels all weird about my age!” what age do you feel like? Did you get stuck somewhere? Are you super old and super young when you should just be plain in the middle like me? And just for fun, would you believe Sutton Foster was 26?

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Happy April!

The Good News: I am now run/walking an average of 6 miles a week! Just over 2 miles in about 30 minutes (ok, 32 minutes, I’ve yet to breach the 15 minute mile mark, but I’m getting there!) 3 times a week. I am a workout QUEEN.

The Bad News: When I am not running (the other 166.4 hours of the week), this is me:

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So, you know, that’s how my day is going.

How’s yours?