legolas

It was January 2002.

I’d come home from studying in Italy and my brother — in his infinite wisdom and willingness to help — had secured me a room for spring semester in a sorority house.  Possibly important to note here, I am not in a sorority and never have been.  But he’d met a girl in Italian class who was headed to Rome as I was coming back, so he snagged her room for me.

I have memories of my parents coming up to move us both back in — but I must have driven, too, because at the time, I was the proud owner of Helen, my shiny red Honda Civic.

It wasn’t snowing when we arrived and carted all my boxes into the room that would be my home for the next few months.  We might have gone out for lunch.  I don’t remember.  I do remember that after everyone left, and I was alone, it began to snow and I listlessly began to put my things away.  I was living in a house full of women I didn’t know.  Back in a town that — until that point in time — had not been very kind to me.  I wasn’t in Rome.  I was alone in State College.

It’s hard to remember all the details, this many years gone, but I know that I was terrible at feeding myself (I didn’t really start to cook until I was nearly 30) and I was very sad.  I remember meeting the girl in the room next to me — far too chipper, far too happy about life.  Her hair fanning out like a fountain from her high pony tail.  She seemed nice enough (and we are friends to this day!) but I wasn’t very enthusiastic about anyone at that point.

I think I suffered through the entire next day putting my room together.  I don’t think I went anywhere, because the snow had come fast and furious, and the roads weren’t inviting.  It was probably dusk when i decided I couldn’t possibly stay in that house for one more minute.  I bundled up, locked my door, and headed out to walk the streets.

It was bitterly cold.  The wind was wicked, spreading the already fallen snow across bare surfaces, numbing any exposed skin.  The snow was like powder, a fine dust in the twilight.  The streets were fairly empty; both of cars and people.

When I went to school at Penn State, there were two downtown movie theaters.  By this time, the small, one screen cinema had closed and was in the process of being turned into something new.  But the multi-screen one across from the metered parking lot and next to the Gingerbread Man (also, sadly, extinct) was still there.  When I couldn’t bear the cold anymore, I stumbled into the lobby, hoping to find a movie that was starting soon.  I’d seen “Ocean’s 11″ over Christmas break, and I would’ve watched that again.

But absolutely nothing was starting within an hour except for “Fellowship of the Ring.”

I remember taking a keep breath and weighing my options.  Go see a movie I had absolutely less than zero interest in ever seeing and be alone, in the warmth, for a few hours (and thus avoiding returning to the sorority house).  Or continue to wander the streets, and have to go back to that house.

I bought a ticket.

The movie theatre had multiple screens, but some were very small, with only ten or twelve rows of five or six seats.  It was playing in one of those, and I shuffled into a seat near the back.  There was a smattering of people in the seats in front of me.  I peeled my coat off, and tried to warm up.  I think I’d bought myself a soda and some popcorn.  It wasn’t long until the theatre dimmed.

There were no previews.

I sunk low in my seat, wondering if I could possibly sleep.  I was tired, and that house was so unfamiliar.  It was so cold.

And then the movie began.  And I was completely transported from the first moment.  I found Hobbiton endearing, and the Riders in Black terrifying. I loved Merry and Pippin and the dogged loyalty of Samwise.  I loved the stoic nobility of Aragorn and the majestic beauty of Legolas.

In a strange, surreal sort of way, “The Fellowship of the Ring” saved me.  Those first few weeks living in the DZ house were rough.  But I didn’t care anymore, because Tolkien and Peter Jackson had completely transfixed me with the story of One Ring and Middle Earth. It didn’t matter that I didn’t want to be back at school, that I felt as though I had no friends. None of it mattered, because I had Frodo, and Merry and Pippin and Samwise.  I had Gandalf and Gimli and Aragorn and Arwen and Legolas.

To this day, my husband puts on “Fellowship” when I am sad, when I am tired.  When I need comfort.  We have watched it more times than I can count.  I know most of the lines.  It feels magical, even fifteen years later.  Literature – creativity and imagination — those are the things that have always saved me across the years.  When I’ve been alone, deserted, lost.  Something that lifts you up and takes you somewhere new.  Somewhere exciting and unknown.  Something created from nothing.

beginnings

I wasn’t always talkative.

When I was younger, I was painfully shy.  Handicapped by multiple moves and the unfortunate combination of buck teeth, bad vision and very thick, very curly hair that I had no idea what to do with.  I don’t think my mother did, either.

I have memories of my mother being a mom, but mostly I have memories of her being a strong, working woman wearing beautiful clothing, with perfect makeup and floating on a cloud of perfume.  I wished I looked more like her.  Maybe she did, too.  I wasn’t a very attractive child.

Across the years I’ve grown into both my name and my looks.  But moving from school to school and dealing with the painfulness of trying to fit in with children who already had other friends — I think it’s part of why I’m such a loner.  Part defense mechanism, part survival.  I would spend days lying on my bed, reading book after book and eating crackers with pepperoni and squares of dark chocolate.  Wrapped up in imaginary places, with imaginary friends.

It was sixth grade English — a hot, stuffy afternoon — when I discovered my love for theatre.  I think our teacher — a tall, perpetually pale man with a ginger beard — kept a flask of whisky in his lower desk drawer.  He definitely leaned down there often enough to give all our minds the opportunity to speculate.  I don’t know how it happened that we were acting out scenes from an old, orange grammar book, but we were.  And I reluctantly made my way to the front of the class.

It was probably six lines, read with a girl who emanated energy and happiness from her very being.  But it made me feel alive.  Happy.

Happy at Pine Middle School was a rare thing indeed.

In the end, after pursuing acting all the way through university, the painful shyness came back.  I didn’t go to New York.  Instead, I hid for another year in State College, waiting tables and avoiding the responsibilities of life.  And then I stumbled — possibly accidentally, I don’t really remember — to Philadelphia.  Where I also avoided the stage and instead perpetuated anonymity in restaurants, asking other people what they’d like to drink to start.

I haven’t thought about those choices a lot recently.  Everything brought me to where I am, who I am, to the man I married, to the puppy I get to parent.  But maybe — sometimes — dreams lie dormant until you are ready.

I have a great job.  It has been a God send as I’ve learned to navigate my disease.  It has given me flexibility, and the money to pay my bills, buy a home, live a comfortable life.   I’m inherently proud of the restaurants I run, the company we strive to be, and the people who work tirelessly to make it all happen.

But there are moments when I feel like there’s a whole part of me who is missing.

scattered

My brain is all over the place.

I read an article in EW recently — a top 50 of things that made people (mostly staff members) happy.  The list varied greatly, but it made me happy just reading what made other people smile.  I thought — what a cool exercise and blog post.

And then at the end of last week my head pretty much exploded with anger because of circumstances at work.  And I sort of blogged about it on Friday, but after forty-eight more hours of thinking and lost sleep, I felt I had other things to say.

Last but not least, I feel as though my face care journey deserves a follow-up.  My last post was sort of ambiguous about how I really felt.  And while know my thoughts about it all after over sixty days, I figured it might be fair to share it with anyone who actually cares and doesn’t know.

I have a very deep — and inexplicable — love for any Fast & Furious movie with Paul Walker.  The seventh installment was weird — sort of surreal — but the tribute at the end was worth it. My favorite movie of the bunch is “Fast Five” which is the beginning of what my husband and I refer to as the “Ocean’s 11″ theme.  And at the very end of the movie, after Vin Diesel and Paul Walker drive off, leaving Dwayne Johnson to check out the battered safe — a piece of music begins.  It’s called “Danza Kuduro”.  I didn’t know that for a long time.  But I love that song, and no matter what, a huge smile takes over my face when I hear it.  That was the first thing I thought about when reading the EW article about happiness.

Something else I love — the softness of my face when I’m done using the cleansing scrub from R+F.  There is something so satisfying about nice, clean skin.  I will confess that I have become a fan.  I like their products.  Not only because they seem to work really well, but they don’t irritate my skin.  And that’s a huge plus.  Additionally, my skin is much less dry — in fact, not really dry at all.  Partially, I’m sure, because I am not washing my face with a foaming face wash anymore, but also because their moisturizers are just amazing.

And finally, in anticipation of a girl’s night out this upcoming Friday, and the hideous-ness of work this past Friday, what I found in my brain flurry and frustration, was a calm constant.  I feel beyond blessed that I do not need to look to external triggers to justify who I am.  Every part of my life is because I made purposeful choices.  And sometimes those choices make things difficult, but I made them because I wanted to live an authentic life.  I wanted to sleep at night, and be content in who I am.  Friday angered me, on a very base level.  But — and this is much harder to remember than to know — most people’s actions are about themselves, and not about the object of their words/actions at all.  I was internalizing something that didn’t need to be given the attention and power that I gave it.  I know who I am, I know my values.  I know who my friends are, and I know I can trust those people.  I feel confident and comfortable in that knowledge.  The strength of the choices I’ve made, and the life I choose to live.  I’ve earned what I have, because I do good, smart work.

And actions always speak louder than words.

wonder woman

There are a few things my husband will tell you about me if you ask him.

The first is that he loves me and I love him.

The second is that I love musical theatre and have been driving him crazy with “Hamilton” since April.

Third, he’d tell you I have a really cool job in the restaurant industry.  (He thinks much more highly of it than I do at times).

And then he’d tell you that under the surface of my benign agreeability, I’m a rampant feminist.  Not like — we don’t shave our under-arms or we spell the word wiomyn with a “y” to avoid the word men. No, no. Not THAT extreme.

But the truth is, I have memories from a young age of my mother surrounded by women from the Berk’s Women’s Network collating newsletters and being very vocal and strong about women’s rights, equality and all that goes along with what I like to call “smart women’s feminism.”

I’ll vote for Hillary because it’s taken until 2016 for a woman to even be considered as a candidate to run our country.  And while she might have some skeletons, she’s smart and she takes a boat load of shit that would never be said to men.

I deal with the undercurrent of sexism on the daily.  Sometimes it rankles me, and other times I just let it slide.  I fight too many battles to work myself into a frenzy every time someone is condescending to me, or treats me as though my brain is somehow on a  lower level than one attached to a penis.

But I will tell you that there are few things that get under my skin more than women who use sex and feigned ignorance and naiveté to achieve things that the rest of us work tirelessly for because we have integrity and self-worth.  And it really angers me when it happens to me repeatedly.

Ladies, let me say this — and I will say it repeatedly and loudly.

Save yourself.  Have enough dignity to look yourself in the mirror and love yourself, flaws and all.  Have enough decency to ask the world to see what you have to offer beyond your pretty face and adolescent boy body.

Not only do you do damage to yourself, but you do damage to every other woman out there, fighting tooth and nail for equality and respect.

Something else my husband might tell you. It takes a while to get to the breaking point. But once I get there, there’s really no coming back.  I’ve worked very hard for everything I have and for everything I do.  I was not given hand outs, or favors.   And I can be just as venomous as I can be kind.  So there’s that.

 

 

reset

I think one of the most challenging things is to stay the course, and never veer off the path.

I say this first — because this past week has been a beast for me.  Heat, and M.S. and work, and fatigue and … well, just about everything. I felt like my spinning top was beginning to wobble, and I just couldn’t right it.  Burger here, candy there, not enough exercise, not enough water. I couldn’t pull myself back on track.

And I say it secondly, because last night my phone rang as John and I drove home. Luckily, we were at the gas station (it’s not easy to answer the phone while driving in the Jeep with no roof or doors — just very loud).  And I answered, and on the other end of the receiver, my friend just began unloading a little bit of her soul.  And all the things I remembered going through at the beginning of M.S. came back to me, and i heard myself in her words, in her fears, in her anger.

When I was diagnosed — which feels a little like yesterday, and a little like a lifetime ago — I thought nothing was going to change.  I really did.  I believed that.  Deep in my soul, in the depths of my bones.  I was very, very wrong.

Everything changed.

But I had to walk that road.  And it was a challenging, difficult road.  I was angry for a long time.  I felt trapped.  Everything felt hopeless.  I was scared.  Terrified of the disease, terrified of the treatments.  Hopeless and helpless.  I couldn’t even determine what my path was, since things were constantly changing & my body was letting me down in different ways nearly every day.

And even the things I thought I knew — they were hard to remember in the anger and the pain and the fear.

It’s still hard.  This week was a testament to that.  But it’s not as hard as it used to be.  It’s not Lydia-hard.

I think it might be Lydia-hard for my friend.  And my heart breaks thinking about it.  I want to say the right things, I struggle to remember what I wanted — needed – to hear back then.  That it would all be okay?  …. Will it?  That the medicine will fix it …. Will it?  I don’t want to make promises that I can’t be sure will be kept.  I don’t want to reassure her with empty words.

I didn’t have anyone at the beginning who really knew.  I mean, John understood.  He understood having an incurable disease, he understood hospitals, and tests, and doctors and medicines.  He understood how much it takes out of you — the worry, the anxiety, the fatigue.  But he didn’t understand how my body was invisibly breaking down.  I want to reassure her, because I know what it feels like to look totally normal on the outside, but to be feeling horrific with no visible symptoms.  To have people dismiss something because there’s no physical evidence.

I want to be there — let her know that it will get better.  But when people said that to me three years ago, it made me angry.  How could they know?  They didn’t understand.  Their doctor wasn’t saying they were a tough case.  I want her to know that there are people in her corner, people who will catch her when she falls.  But all those words from people made me so angry.

Is it better because I have the same disease? … Maybe …. I don’t know.

What it made me think about last night, as I housed my third Wayback burger this week (yo, that Philly Burger is out of control delicious!) was that i needed to give myself a break.  I needed to take a deep breath, shake off this week, drink some water, get some sleep and get up in the morning and start again.

So that’s what I did.

And I rode my bicycle for an hour.  And I had a green smoothie.  And I feel slightly more centered.  And slightly less angsty.  And I know that if I just focus, I’ll be okay. And hopefully, so will my friend.

hitting the wall

Two weeks ago, I had my first real business trip.

I don’t know why it was so exciting — but I was thrilled with the idea that I was traveling for work.  I didn’t care that we were going to Kansas City (and Denver, but the business was in KC) and flying every morning for three consecutive days.  I didn’t really think that missing my daily bike rides would be a big deal, and I figured Starbucks (with their chai tea and green juice) were everywhere.

On the heels of this illustrious business trip, I had invited all my work people over to the house for food.  I don’t know what I had been thinking when I invited everyone — but I had, and it pulsed on the calendar — dark black letters, and the knowledge that at some point, I’d thought it would be ‘fun’ to have my co-workers and boss over for food.  (It was actually fun!)

Long story short, I mentally survived both the business trip and the little afternoon get-together.  But my body did not.  I woke up last Monday and could barely walk. Everything made me dizzy.  I wasn’t sure what I remembered and what I didn’t from the days that had preceded it.  My body just shut down.  And remained in power-save mode for nearly a week.

I’m telling you, I’ve had these moments before, but never quite this debilitating.  Never quite this all-consuming.  I spent Monday in a fog of sleep and intermittent email checks.  I only got out of bed to use the bathroom.  And once to venture downstairs to eat.  But in general, I felt like I was going to die.

I’m sharing this mostly because M.S. is no joke, folks.  And even those people who live with it every day live very specifically because of it, or live very uncomfortably.  I was so angry for so long about the sacrifices.  But now, I fully understand and appreciate why things are the way they are.  I’d rather eat vegetables, ride my bike and go to bed at 9pm and still be able to fairly fully and functionally exist in society.  Rather than do whatever I want, whenever I want, and pay the price over…and over… and over  Because the further into this abyss that I slide, the more I know about how long everything takes.  And with M.S. it’s about ten times longer than normal. Ten times longer to heal. Ten times longer to recover.  Ten times longer.

Most people can do a three-day business trip, go to work the last two days, prep their house for some people to come over and eat, and then continue into the next week unscathed.  Not this little duck.  Yesterday was the first day I woke up and didn’t struggle to walk the first few steps out of bed.  Seven days after our luncheon.

I used to feel self-conscious if I said no, or went to bed early.  As though I was being a bummer, a drag.  I’ve gotten over that.  Every once in a while I push it too hard, I try to go a little further than I should…. And then last week happens.  Brain fog for a full week of work.  Night sweats.  Painful exhaustion.  And I remember with amazing acuity that I have multiple sclerosis.

 

for these things ….

There is nothing quite like the first sip of chai in the morning.

I’m sure people feel that way about coffee.  But for me, it isn’t about staying awake, or even waking up.  The warmth and milky sweetness is just utterly comforting.

I have tried many times to give up my chai.  And I can’t.  And I probably won’t. Ever.  The little things in life that make us smile are worth keeping and cherishing.

This morning, after shivering the entire ride into the city (and for that, I actually DO say thank you to Septa because a person cannot always rely on their train to be cold in the heat of July), I made my way to Starbucks (as I do every morning in the city).  Most of the baristas know me, and they know my drink.  I’m nothing if not a creature of habit.

And as I walked back toward the office, twenty ounces of soy milk and chai syrup safely cupped in my hands, I thought about all the little things that make me happy.  Maybe not every day — we all have really bad days — but most days.

I love the city in the morning.  It’s a little hard to admit that, because Philadelphia and I have a love/hate relationship that tends toward the ‘hate’.  But before everyone gets angry, and the streets are hot and sweaty — before the gates are raised on the storefronts, and only half the population is awake — that Philadelphia is my favorite.

It isn’t easy dragging oneself out of bed before six a.m. (yes, there are lots of us awake before six,  but it doesn’t make it easier!).  I’m usually stressed out because I am running late for the train (Septa can be late, but us riders cannot!).  And the ride in can be tedious and full of weird smells, loud phone talkers and grumpy conductors.  It’s a cost/benefit analysis every day — the train can be much too public, however! ~ driving into Center City from our new house makes me want to gouge my eyes out.

But when you finally emerge onto Market Street, and it hasn’t gotten grossly humid yet, and the city is humming quietly as it stretches its arms and begins to wake up — it makes me grateful to come into the city multiple days a week, despite the very long commute.

I’m grateful for my new office (despite all the challenges) because it’s full of windows and natural light.

I’m grateful that I don’t punch a clock.

I’m grateful that when I get off the train at night, and speed walk to my car in an attempt to get out of the parking lot before the swarms of people also disembarking at Thorndale, that my house is less than five minutes away.  And Lucy will be there to greet me, with her wiggly tail and her toy gripped firmly in her mouth.

I’m grateful for our walks around the neighborhood (currently a construction zone) and for the time I spend getting sweaty on my bike (stationary or mobile ~ either works!).

I’m grateful for my house, and its comforts.

I’m grateful for my husband.  This could be an entire novel, so I’ll limit it to the fact that he is my best friend, and we get to hang out with each other nearly every day.  And wake up with each other nearly every morning.  And share all the goodness of life with each other.

I’m grateful for music, and especially “Hamilton” ~ the musical that restored my faith in the art form I have loved since childhood.

I am grateful for my family and the fact that they live twenty-three minutes away (just ask them!).  I am grateful that my dad comes to walk Lucy on Fridays while John and I are at work.  I am eternally grateful that they are always there for comfort, for advice, and for dinner.

I’m not sure why I felt moved to write this post.  But life gets really hard, and there are very dark moments.  Gratitude is important.

 

friday morning

I’m on my way to meds this morning.  It means getting on the 6.50a train – which is now the norm because of the issues with Septa’s car fleet that was taken off the rails over 4th July weekend.  The parking lot was nearly empty this morning – I guess a lot of Thorndalers don’t work on Fridays.

Yesterday, over 70 people were killed in Nice during a Bastille Day celebration.  Our world is sliding slowly toward chaos.  I wonder about my friends who have small children — I wonder if they think of the world their children will inherit one day.  It hasn’t — as yet — seemed to inspire much action amongst my generation except memes on Facebook and angry rants without actual thought.  Saying we need change is like saying I’m going to be the next President.  Empty without any action.

I’ve felt like writing a lot recently.  Not because of Nice, or Orlando, or Paris before that.  I feel as though my thoughts -on all of the violence and hate that seems just under the surface of our world- are muddy and confused.  I want to understand – I really do.  But I don’t understand and I don’t know what the best thing to do is.

This morning, all I want to write about is my bicycle.  Somewhat trivial and insignificant in the face of the tragedy our world is dealing with.  But meds week is exhausting for me — more so in the summer, when the heat is debilitating.  So this week, along with my bi-annual meeting with Dr. M, has been excruciating.

(P.S.  Loud people on the train at 7am irritate me.  They shouldn’t.  But they do.  Shhh people!) 

Yesterday I made my way home through a fog of fatigue, kissed my Lucy Lou, took her on a walk, and then shuffled down to the garage and my bicycle.  We also have two real bikes in the garage — we have gone on a long ride since buying them.  But I am much more consistent about jumping on the stationary Schwinn, picking a course and time goal, putting my head down, and falling into the story of ‘Hamilton.’ (Yes, folks.  I work out to ‘Hamilton.’  At this point in my life I do just about everything to ‘Hamilton’.).

And here’s the crazy thing — after 45 minutes, a lot of sweat, and 15.6 miles (my best time/distance combo so far) I felt infinitely better.  My mind felt clear.  I felt energized.  I realized, as I wiped the bike down and began shutting off the lights and the overhead fan, that I am probably addicted to the bicycle.  I’ve joked about this before, but yesterday it felt real.

Before M.S. I began running.  I did Broad Street — i had the Nike app on my phone.  Lucy and I did between four and five miles most mornings.

And then I broke my foot.  And M.S. began to consume me.  My legs got weak, we got Lydia — walking became harder than running ever was.  And time slipped by.  I was sad, and angry.  I felt trapped.  I tried going to the gym and swimming. It felt great — but the amount of time it took — get there, get changed, get wet, get out, get dry, drive home.  I was rarely motivated to go.

Last October, during a routine scan, John’s doctor’s saw a shadow.  And then surgery became necessary immediately. And so, he bought a stationary bike.  For himself.  To help with recovery.  It sat in our house from November until about mid-January.  It became what most home exercise equipment becomes — a collector of dust and occasionally laundry.

I don’t remember what got me on the first time.  Maybe our upcoming trip to Italy. Possibly not wanting to stare at a lot of wasted money.  Not sure.  But when we got home from Italy, I decided to make some changes.  So on March 1st, I started riding the bike.  Every day.

I didn’t like it a whole lot at first.  It was a drag, it took too much time, I got all sweaty.  I didn’t have work out clothing.  I had EVERY excuse in the book.  So I signed up for Fabletics (online advertisement = works).  I’d read that having nice clothing helps with motivation to work out.  So I ordered my first outfit — orange leggings and a white tank.

I wore those leggings ALL.THE.TIME.  I love them. I wore them grocery shopping and to Va La Vineyards.  And I wore them to ride my bicycle.  Every day.  When April rolled around and I ordered my second outfit, I couldn’t wait to not have to do laundry every day.  I’d committed to at least 66 days of working out (something I’d heard about having to do something for 66 days for it to become a habit).  I began actually using my “My Finess Pal” app for the first time in about four years.

It’s halfway through July now.  I have four or five workout outfits, padded bicycle shorts, body butter, riding gloves …. The list (surprisingly!) goes on.  Now, my bike isn’t a daily purgatory.  It’s where I go when I’m sad, when I’m mad, when I’m tired.  It is 45 minutes a day (give or take — sometimes I max out at 30 and sometimes I push to 60… it really depends) that is just my time.  It makes me feel good.  Really good.  Healthy and as though I’m taking care of myself.  I want to give this gift to everyone.  I understand why fitness people hype it up so much.  But you can’t actually give it to anyone who isn’t willing to push through.

Because it’s not super fun at first.  And I have a feeling that if you slip, and miss a couple of weeks — it isn’t easy to go back.  But it feels like a precious gift, a little secret weapon that I hold closely in the palm of my hand.  That no matter what, I can get on my bike, and get sweaty, and feel better.

always day two

I’ve always felt that the second day of doing anything is the hardest.  You begin your endeavor on day one with enthusiasm, great intentions, optimism.  And after that first day, you have a much better idea of what is in store.

That’s how M.S. goes.

I started out full of optimism, all the things I was going to do – the things I was going to prove.  The disease humbled me fairly quickly.  J and I spent yesterday in the Neurological Unit at UPenn’s Perelman Center and no matter how hard I try, how far I believe I’ve come — sitting in multiple doctor’s rooms discussing all my symptoms, how I’m walking, what my numbness level is — it’s all exhausting. There are no secrets between my husband and I.  Health issues have prevented that.

This gloomy Thursday morning, as the train makes its way laboriously into the city, my head is filled with thoughts, fears, details i forgot to mention.  Multiple sclerosis is no joke.  Maybe the average observer can’t see my struggles (and that in itself can be very frustrating) but they are there… every second of every day.

I lost feeling in my feet on December 23, 2012.  I remember very clearly, because we were in Mansfield for Christmas, and I hoped (prayed) that it was just a circulation thing.  Or maybe a pinched nerve.  I very clearly remember wondering if I’d ever feel my feet again. It was terrifying at the time.  Now, it’s just life.  I don’t remember when it climbed up my legs and down my arms.  It’s better than it used to be (Tysabri, food, exercise, etc).  But my pinky fingers and ring fingers are always tingly.

The thing about M.S. is – you can’t quit it.  So it just perpetually feels like day two, a vast unknown future full of questions.  Fears.  I have tried over time (after the anger and the denial and the sadness which inevitably comes) to find my way.  To crack the code.  And sometimes I feel like I have it under control, and other times I feel lost and alone.  I wonder if I’ll ever not have a headache, if I’ll ever not feel exhausted.  But it’s always back to putting one foot in front of another.  In having faith that the choices I am making are good ones.

It’s always day two.

breaking through

I’m tired all the time.

Not occasionally, or if I have less sleep than normal.

Constantly, unrelentingly.  Always.

This is one of the most joyous parts of having M.S. (To be fair,  I felt constantly tired before the diagnosis, I just didn’t have an explanation then).

Fatigue is a funny thing.  I stumbled through yesterday morning, as if in a dream.  I had two chai teas (in an attempt to be more ‘with’ it — and was then sugar-high and jittery all day).  I struggled mightily to remember the end of Sunday night.  Not because I’d had too much wine, but because by the time Sunday began to wind down, I had crossed over from ‘normal’ fatigue to overwhelming, bodily-function-shutting-down fatigue.

Every day is a learning experience.  I think it probably is for everyone, but I’m much more tuned-in to it now.  I have to figure out the pieces of this puzzle in order to live as normal a life as possible.  And the fuzzy vision and tingling legs are significant M.S. factors, but really, the thing that has taken over my life is the fatigue.

In the most basic understanding that I have, multiple sclerosis is my body’s immune system mistakenly attacking my nervous system.  Probably because it’s so tired, it has no idea what is going on.  Being familiar with that feeling, it makes total sense.  But jokes aside, energy is constantly being used to fuel this mistaken battle in my body, leaving much less for other (also important) things.  So when you first get diagnosed, and doctors tell you to just keep living a normal life ~ that’s not the best advice.  Sadly.

What I’ve found is that the healthier I am, the less pressure I put on my body (to digest food, to be hydrated, to have enough rest, etc) the better I feel.  Now, my meds are a huge factor as well.  My meds shut down my crazily active immune system when it seemed to be wrecking my body every four to six weeks.  But keeping that calm consistent is two parts meds, and one part smart living.

Sometimes, I don’t realize that I’m maxing out my body’s capabilities and i have a morning like yesterday.  Sunday didn’t seem bad while I was living it.  But waking up with no memory of my evening and feeling as though I was walking through water the whole day … not the best.  Sometimes I feel tired and I get on my bike anyway, and I actually feel better (weirdly counter-intuitive and I’m still figuring it out).  I know routine is my friend.  I know water is my friend.  I know vegetables are my friends.  Alcohol is not.  Meat is not.  Staying up past 10pm is not.  But I haven’t really hit on a consistently winning formula yet. Sometimes we have a nice steak dinner and a bottle of wine, and I feel exactly the same as I do when I eat zucchini spirals and drink 90 ounces of water.  Other times…. not so much.

And managing the vision and the numbness is much easier than managing the fatigue.  I can’t seem to figure out what works.  Some nights I sleep for eight hours.  Other nights I get up every two hours to use the bathroom.  Some nights I am out like shout.  Other nights I lie awake trying to calm my mind.  Sometimes I am burning up and sweating through my pajamas and sheets.  Other nights I pile on blankets in an attempt to get warm.  Nothing ever feels consistent.

Sometimes I worry about how my work schedule with the pressure and stress affect my body. Whether it’s a major factor when I get cotton brain.  I wonder if that’s why the bike helps even when I feel tired — it alleviates the tension gripping my body.

Mostly I just push through.  Having M.S. means learning to live with the fatigue.  It means participating in events or attending parties even if sleeping seems vastly preferable.  Because the sleep never alleviates the overwhelming tiredness.  The tiredness is a constant companion.  You have to break through to the other side; learn how to live with it.  How to function within it’s limitations.  It’s about both learning how to say no and learning how to say yes.  Learning how to prioritize.  Recognizing the signals your body sends you.  (I am not very good at this yet, but I’m getting better).