the FDA

Today, the hubs and I journeyed into Philadelphia for my quarterly appointment with Dr. M. Since I’ve passed the two-year mark of being on Tysabri, they have to monitor my levels more closely, because I have the JC Virus. (Little bit of info: the drug Tysabri elevates your chance of getting PML -which can be a fatal brain infection- if you have levels of the JC virus.  Some people have JC, some don’t.  They aren’t really sure how people get it/don’t get it, but it doesn’t have any affect on you … unless of course, you have MS and want to take Tysabri, which was the strongest drug for MS on the market until Tuesday.  Anyway, in addition to checking the virus levels, organ function has to be tested and monitored, etc etc etc).

Essentially, it just means I get to have more scans and more bloodwork on a more regular basis.  Who could refuse that offer?!?

Last Tuesday, the FDA approved Ocrevus (I have to use the marketing name, because the actual drug name is very long and I can’t spell it properly).  Ocrevus is the first M.S. drug that has shown positive effects in progressive M.S. patients so for them, I am over the moon that it was approved. I have relapsing/remitting MS but mine was pretty aggressive when I was initially diagnosed.  Dr. M had suggested switching me over to it last year upon its approval by the FDA so John and I were interested in what he had to say today.

First, Dr. M was intimately involved in the clinical trials, so he’s pretty close to the effects of the drug as well as getting it approved.  Second, I am fairly certain that I drive Dr. M nuts.  In a good way.

The bottom line was, after talking for a while, Dr. M, John and I decided that for now, I am going to stay on Tysabri.  Listen folks, some of the possible side effects of Tysabri are pretty scary.  Dr. M prescribed it for me three times before I actually scheduled my first infusion.  He had to sit with me in an exam room for hours to convince me to try it.  And at the time, I could barely walk a city block without a cane.  My flares were coming regularly every four to six weeks.  In retrospect, I’m not totally sure why I hesitated.  But I can only really say that in retrospect.  Knowing now that I haven’t had the scary side affects.

I’ve said it once …  I’ve said it a million times.  M.S. is a tough effing disease.  It’s creepy and sneaky and a real bitch.  I hope that as data comes in about Ocrevus that it’s all good.  But I’m super glad that I’m staying on Tysabri for now.  It’s been my savior.  And yes, it’s scary.  But sometimes you have to walk through the fire to get to the good stuff on the other side.  That’s how I think about it.  That’s how I have to think about it.  If I fell into the what-ifs too much, I would drown myself.  Instead, I try to know as little about it as possible.  Here’s what I know ~ in the two years I’ve been on it, I have had a quality of life I thought was an impossibility.  I don’t have to travel with an assortment of needles anymore.  My disease is officially classified as ‘in remission.’  And I am so, so grateful.

mindset

When I started this blog (oh so long ago) my full intent was to have an amazing cooking blog.  I was a bit obsessed with them at the time, and also, I didn’t really cook.  As I’m sure I mentioned in my earlier posts, I worked in food service — so the need to feed myself was minimal.  I just ate at work.  I enjoyed those early blog days — finding recipes, and taking food photography (harder than it appears, by the way).  Now, it seems to funny to remember a time when I didn’t enjoy putting together a meal.

Then January 21st, 2013 rolled around.  And my whole world sort of — fell into chaos? This blog became a place I came to scream into the void (or at least, that’s how I thought of it).  Not really diary (I don’t share everything!) but also a little without a direction.  Whatever came into my head became what I wrote about.  It was comforting, and cathartic, while also being amorphous.

Then, this year, I entered unemployment.  I can’t call it retirement — I feel too young to qualify for that.  I should be working, theoretically.  But … and here’s where I get a little gun shy, because it’s admitting weakness, and I’m not a giant fan of that … I found in my retired unemployment that the things I thought were caused by my job (unending fatigue and ennui, cotton brain, a lack of focus) didn’t go away.  I chewed on this idea for weeks.  Maybe a few more days of rest?  Maybe … maybe ….

I turned to my husband with eyes full of tears and confessed that I thought it had to be the M.S.  With it articulated came the wave of paralyzing fear.  I am only 37 – in how many ways will this disease continue to eat away at my life?  He told me not to panic.  That we would get through it all together.  He said I didn’t have to go back to work until I felt ready.  (Which – inevitably – made me want to go back to work yesterday).

Multiple sclerosis is a funny disease.  It erodes your body from the inside, insidious in its invisibility.  But we aren’t alone – those of us dealing with our own unique and debilitating battles have a huge community that we can tap into if we choose.  I’ve surfed on some of the websites, I’ve read the conversation threads.  Sometimes they are comforting — hearing someone else articulate something you thought no one would ever understand.  A lot of times they are deflating.  Like a very long, unending war that we will inevitably lose.

I’ve realized over the past four plus years, that my best, strongest and most reliable weapon in this fight is my mind.

Listen, the green smoothies are great.  And I love exercising.  It has deeply changed my quality of life.

But the Arkenstone of it all?  Thought.

Dealing with medicines and doctors and all the wildly “intoxicating” things that go hand in hand with having an incurable neurological condition is made infinitely easier if you think about it in the proper context.

I learned this from my husband.  A man who has gracefully handled his own cross — that of M.E.N. type 1 — since the tender age of fourteen.  He smiles and nods and contemplates.  He doesn’t panic.  He breaks things down to their simplest components and examines each one with a discerning eye. He finds — even in the face of seemingly insurmountable odds — the shred of hope worth holding onto.

So in that spirit, I thought I’d give a little more shape to this blog.  I figured — there are a bunch of M.S. sufferers out there, and people who love them who can’t understand.  What if I write about the experience, and trying to see it through a filter of positive thought?

Because it’s easy to be glum and sad when afflicted with something no one can see.  It makes you want to yell at people — shake them.  Don’t you understand?  I have M.S.!

They don’t understand.  You look pretty normal to them.

But … but … But! I am grateful that I am still able to interact in a world without a wheelchair.  I had a cane for a about a year — her name was Lydia (because, as I’ve said a thousand times, I felt that 34 was too young and I couldn’t call her a cane).  It changes how people look at you, think of you.  Speak to you.  Yes, I am frustrated when people treat me as though nothing is wrong.  But then, after a deep breath, I am grateful that I am healthy enough at this point my disease, that people don’t know.

Yes, having M.S. is hard.  I have just as many bad moments as good moments.  But M.S. doesn’t mean the end.  It doesn’t mean that we are no longer capable of doing great things.  It just makes it a little bit harder for us.  And maybe … the accomplishment a little bit sweeter.

 

creature comforts

On Wednesday my husband bought me three Caramello bars.

I adore Caramello bars.  I compulsively buy them every time I go to a Wawa (or heaven-forbid another gas station market). I cannot go to CVS without detouring to the candy aisle to check for them.  If I don’t eat them, I stash them in the freezer.  Y’know.  Just in case.

I was feeling a little blue on Wednesday.  It’s the middle of March, so it’s right on time.  But it gets me every year because I am convinced that it will be better.  It never is.

Tuesday’s ‘blizzard’ was so disappointing, and my day was so … far from what I’d imagined … that Wednesday felt like a hangover.  The ‘ice snow’ was piled inconveniently around the entire neighborhood, making a walk with Lucy like climbing Everest and moving my car basically a no-go  Not that I had an incredibly exciting destination.  I didn’t.  But a chai tea latte on a snow squall day can cheer up anyone.  And it wasn’t even an option.

Bad days are always peppered in with good days — regardless of my work status.  I think everyone — if they were being honest — could agree that not every day dawns full of sunshine and roses.  It’s really about how we choose to deal with the obstacles.

I’m getting better, but I’m not necessarily good.

Some of the things I’m non-negotiable about in order to get myself motivated ~

I always get up when John takes Lucy out for her morning walk.  No matter what, I make us smoothies.  I’m pretty Nazi-ish about green smoothies.  Sometimes all John wants on the weekend is a big breakfast, and instead I present him with a bright green smoothie, and multi-vitamins.  He’s a champ though, and drinks them every day.

I also made a commitment last March to ride my bike.  And now, I ride pretty much every day.  Even when I procrastinate until 4pm, I manage to slink down, climb on and ride.  And inevitably, I feel better.  All that talk about endorphins and exercise?  Yeah, it’s pretty true.  Exercise works like a charm every time to boost my spirits.

I’m also a little obsessive about my water intake.  I try really hard to drink about 90 ounces of water a day.  First, it’s not easy.  Second, you have to pee a.lot.  But again, it always ends up being worth it.  I feel better, I don’t stuff junk food in my face all day, and my skin looks amazing (haha!).

I think one of the most important things is recognizing when the blues are coming.  Sometimes I’m in them before I realize.  But because I am such a creature of habit, I’ve usually already had my green smoothie, drunk a ton of water, and either ridden the bike or had it planned.  Doing these things are a small help in keeping my life on an even keel.  Because it’s not just about the sadness, it’s also about the M.S.  The way it wreaks havoc with your life.  The way you are up one minute and down the next.

I’m really really hoping that the weather figures itself out and we progress slowly toward April and warmer temperatures.  I love the winter and the snow.  But Mother Nature sure has been ornery about it this year.  I’m ready to feel steady again.

 

 

 

having MS

Sometimes, the sadness is overwhelming.

I feel surrounded by indifference, by dullness.  By fatigue.

It isn’t all the time, but when it happens it is palpable.  A living, breathing thing pulsating in my consciousness.  The unhappiness, the frustration, the anger.  The fatigue.

The weather broke a little bit last week and I felt like I could breath again, after months of feeling suffocated.  And then the heat came back with a vengeance, raging and thick and unbearable.  I felt broken, defeated.  Ready to give up.

Last year, one of my cousin’s dearest friends – a person she considered a brother – committed suicide.  Their friends launched a successful Go Fund Me (or it’s equivalent) in order to fly Alison & Xennon home to the UK from Japan to be there for his funeral.  I’d seen them both mere weeks earlier, when we’d all been in the UK for our Granny’s memorial service.  Our Granny, who lived 93 full years.  At the time, Alison told us stories of Ewan visiting she and Xennon in Japan, getting lost on New Year’s Eve and locked in a rail station.  Funny, endearing stories.  About a person who filled her life.

And six weeks later, he jumped in front of a train.  And she and Xennon went back to England for the second time in less than two months.  For another memorial service.

I’m not that sad.

Even when I’m painfully sad, I’m not that sad. But I can understand it.  I can understand how it consumes you, how it eats away at your insides until you don’t see any alternative other than ending everything.  Ending the pain, but even more unbearable, the indifference, the disinterest.

As a society, we don’t talk about depression.  We don’t talk about it because of the stigma. If people see that weakness, it will forever inform their opinion of you. And we can’t allow that to happen.

So instead, people drown in the darkness, without a lifeline.  Without hope.

I’m pretty sure that my maternal grandfather had horrible depression.  I’m pretty sure depression runs just under the surface of my mother’s entire family.  Maybe it’s because we all think too much, our brains function too well.  They say ignorance is bliss, yes?  We aren’t ignorant.

But we don’t talk about it.  And if anything is even mentioned, it’s in hushed voices, in quiet conversations that not everyone is privy to.  There are too many consequences of depression.

I don’t feel sad all the time.  It comes in waves, and it consumes me, and then I find my way out again.  The weather breaks, the pressure is released.  When I’m in it’s grasp, when I’m at the bottom of the well — those are the hardest moments.  Hard to remember that it will get better, hard to remember that time heals everything.

This morning, I’m sitting in my office, surrounded by my beautiful things; objects imbued with such love and significance.  I know — intellectually — that my life is good. I know that depression comes interwoven with my disease and that the weather is wreaking havoc with  my body.  But so many external things make everything feel bad.  Unbearably hard.  And then, all I want to do is sleep.

 

 

moments in time

One thing I’ve found that is unwavering about M.S.  Everything you do becomes very deliberate.  How you walk, where you walk, how you eat, when you eat, how you sleep, when you sleep, how you dress.  Routine and diligence become your friends, the backbone to your life.

I was thinking about it today, as I stepped carefully on the sidewalk, my eyes scanning for uneven pavement or cracks.  I thought about how I go to bed and wake up at nearly the same time every day of the week.  How I eat the same things.  How I track things, and chart things.  How I feel it every time I deviate from the norm.

How this disease has made routine a daily exercise.

My alarm began chiming at 5.15a this morning.  The sun hadn’t begun to crest the horizon.  The room was still murky darkness.  Every part of my body felt heavy, aching and slow.  And this was after going to bed at 8.30pm following a nap halfway through the day, riding my bicycle and eating zucchini spirals for dinner.

That’s my life.

I’ve been dying of fatigue recently.  I attribute it to the unrelenting heat of late August and the frenzied stress of a growing business.  The fact that half the time, every single person in my company just gives up and hands me their task.  Because I have nothing of my own to do.  Obviously.

I walked down the sidewalk, noting the picnic tables (if I bump them, a huge black bruise will color my leg for weeks, so I’d like to avoid that), noting the slanting concrete, the jagged edge of a crack, the person walking aimlessly toward me on their phone.

M.S. doesn’t allow you not to be present.  You sort of have to be in the moment at all times ~ aware of your surroundings, what’s happening, who is around you.  Because my eyesight gets dark and fuzzy, I have gotten really good at seeing ‘clues’ in large shapes.  In knowing the train schedule and the track number ~ knowing where everything is located before hand.  The bank address, the turning lane for a restaurant ~ so many things.  Just so I don’t feel lost, so I don’t get swallowed up by the frustration.

I look totally normal.  When you see me.  I don’t have any super obvious handicaps.  It’s not like when I needed Lydia and people could see there was something amiss.  It isn’t like that anymore.  When I’m talking, and I completely forget what I’m saying ~ it seems like anyone who gets distracted.  But it eats away at you bit by bit.  You start to doubt yourself.  Wonder what will be next to go.

So you start to do everything very deliberately.  Park in the same spot every morning.  Follow the same pattern as the day before.  Do anything you can to keep the fear at bay.  To feign normalcy.

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.

 

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).