I tip into walls.

Not sometimes.  A lot.  I think I’m walking like an upright human and then, suddenly, the world exists on a steep angle.

I’ve gotten pretty good at handling it.  I watch where I walk, I scan the floors and look out for things I can grab for balance.  It becomes second nature when you have something as unreliable and fluctuating as MS.

Having an invisible illness is a tricky thing.  People make assumptions about you — or rather, you think people make assumptions about you. This is probably because you have so little control of what your body does on a regular basis and you have such heightened awareness, you are completely sure that all eyes on you are questioning your sanity.  Usually, they are not.

We all have a very high sense of self-importance.  We think what we are doing, what we are reading, what we are interested in is also the most interesting thing to other people.  This is what makes Instagram (or any social media outlet, for that matter) so appealing.  We can post about our lives as though every other person is waiting with baited breath to ‘read all about it.’

I’m painfully self-conscious about my MS.  About tipping into walls.  About walking like a drunk person.  About losing track of a conversation mid-sentence.  About choking on my own spit.  About peeing my pants.  I feel like I walk through life with neon signs alerting everyone around me to my myriad of flaws.  It takes a second to remind myself that other people have more interest (by far) in themselves than they have in any other person.  Sort of like myself.  I’m so caught up in keeping all the balls in the air that I don’t have time to notice what other people are doing/not doing/messing up.  Plus, I have a lot more patience for most other people than I have for myself.

Today my world is spinning.  Not figuratively.  Literally.  It’s the first time this has ever happened, so I’m finding it very frustrating and unbalancing.  I don’t like not having a list of things to try/do to solve a problem.  (You know the list.  LIke, for a headache you take aspirin, you use ice, you rub magnesium lotion on your neck, you put Vicks vapor rub behind your ears … you get the gist).  

I am hydrated.  I have eaten food (protein and complex carbs).  I have rested.  So far … nada.  I have sent a message to my GP through my medical portal (and have been alerted that since it is a non-emergency, I can expect to hear back within 2 business days.  If I am still dizzy in two business days, I won’t be waiting for a response from the portal, I can promise you that).

There’s a line in one of my favorite movies, A Few Good Men, when Tom Cruise says “And the hits just keep on coming.”

I think maybe, that is the theme of my life.

xox, g

When I was younger I heard an interview with Celine Dion.  She was describing what she wore to her wedding — the weight of the crown and the pain of the shoes.  She laughed and said, almost dismissively, “When you start worrying about comfort you have become old.”

I gotta tell you, that left a lasting impression on me.  I spent many a day, many an evening, being uncomfortable in my clothing, reminding myself that I didn’t want to be old.

The flaws in this thought process are RAMPANT.  Now, at the ripe old age of forty, I can promise you that my number one priority is being comfortable and that if that makes me old, so f*cking be it.  Then I’m old.  I refuse to suffer needlessly in uncomfortable shoes, pants or anything else.  It’s a true waste of time.  Why be uncomfortable ON PURPOSE?!?

**

I learned, at some point in life, that advice from Celine Dion would not steer me in the correct direction.  Celine Dion’s priorities did not accurately (or ever) reflect my own.  In fact, the only person I should have been listening to, all those years ago and every day since, is me.  There is confidence in comfort, self-assuredness in feeling okay in your own skin.  Always trying to be something else, wearing something outside of that … it sets a person up for failure.

I bought three tank tops today.  I didn’t need to.  I probably shouldn’t have bought them.  But they are tanks with built-in bras by my favorite bra company IN THE WHOLE UNIVERSE … and they sell out so fast I knew I had to seize the moment.

Listen, over seven years ago I began learning very difficult life lessons.  Not because I wanted to or because I had found some sort of enlightenment. Nope.  It was because I’d been diagnosed with an autoimmune disease that has slowly and systematically eaten away at my body.  I only have so much energy; so much patience for all the minutae of life that is exhausting.

I work hard to be as healthy as I can be, but that work wears me out.  By the time I’ve showered and need to get dressed I don’t want to spend even an ouce of unnecessary energy trying to figure out what to wear (and I most certainly don’t want it to be uncomfortable).  I buy things I like in a couple colors and rotate through them.  I save mental energy and physical energy.  Because  … spoons.

Have you heard the spoon theory?  It’s a good one.  It’s the idea that those of us afflicted with some sort of illness or disability (be it visible or invisible) have a finite amount of energy in each day.  Let’s say, twelve spoons.  We have to decide how to use those spoons (shower, cook, work, drive, laundry, yoga, mopping floors, etc etc etc ad infinitum).  I started wearing my hair curly about two years ago because I just couldn’t keep spending so many spoons straightening it.  Not because I like curly hair or I was ahead of the curve with the new natural hair trend.  Nope.  Because I was tired.  Like I am ALL. THE. TIME.  If I use too many spoons in a day — like, I work and clean the house and cook dinner and shower (showering = a lot of spoons) and take Lucy on a walk or two … and all of sudden I crash … well, I just used tomorrow’s spoons.  So when tomorrow rolls around, I’ll be a wet dishrag for half the day because I just don’t have enough energy to get through.

And not just a wet dishrag physically.  Also, and even more rewarding, a wet dishrag mentally.  Which (obviously) can wreak havoc on a working person.

So.  Spoons.

All I could think about today was how I have designed my wardrobe to look put together without requiring much thought or effort at all.  I like rompers and dresses and overalls and jumpsuits (one thing = the whole outfit = not much thought needed).  I like athleisure because I work out and I like to also look nice, and leggings and a sports bra don’t take much thought.  Plus –> comfy!!

I like being comfortable.  My body so often is *not* (because, well, MS).  And I thought about Celine Dion and how I wished so very hard I hadn’t listened to her all those years ago.  But young minds are impressionable ones, and young minds seeking approval and a place in this world soak up all the bad advice about how to do it.  If I could change who I was back then I wouldn’t become who I am now, so I guess there’s comfort in that.

xox, g

Last week I was fairly certain that I was getting wildly ill.

So certain that I went to see a doctor.  Which — while seemingly counter-intuitive for a person with an autoimmune disease  — is unusual for me.  I see enough doctors on a regular basis that voluntarily going is not high on my list of things to do.

I was convinced that I would be reprimanded for not having gotten a flu shot.  Told I had the worst possible version of the flu.  And subsequently spend a week (minimum) near death.

Nope.

I was told I have allergies.

Yeah.  Anti-climactic.  And also, infuriating.  Allergies are the worst.  Just … awful.  There’s no real cure (sort of like the flu, right?) with the added benefit of coming back seasonally to torment my head, my balance, and my sanity.

And here’s where I’m at, nearly ten days since ‘diagnosis’, post-steroid treatment, and saddled with the prospect of squirting sh*t up my nose indefinitely — I’m depressed.

Health is such a tricky thing.  My health is compounded by the added bonus of multiple sclerosis, chronic, low-grade inflammation and a myriad of other, delightful maladies associated with the former.  But health — for all of us –is tricky.  Navigating it is sort of like taking a leap of faith on a wing and a prayer.  Hoping that what works for the majority also works for me.  Trying desperating to interpret the messages my body is sending me — messages sent in a foreign language that I do not speak and can only vaguely de-code.

Always in the back of my mind are the following (thank you, Dr. M).  Is this MS? Is it aging? Is it nutrition? Is it digestion? Is it a reaction to my medication? Am I getting ‘normal’ sick? What did I eat that I shouldn’t have?

Maybe I’m tired all the time because I’m worrying all the time.  Because I’m working so effing hard to be as healthy as I can be … and still, sometimes, failing.  What a letdown.

And our health system (let’s separate it from health insurance momentarily because — woof — I cannot tackle that thought process tonight) is a mess.

Acute illness and chronic illness are treated … the same?  Here’s the diagnosis, here’s the drug protocol.  Come back in three months and let us know how you are doing.  Thanks and have a nice day.

But wait….  Acute illness can be treated — usually swiftly and effectively — with modern, western medicine.  But chronic illness?  Why aren’t we talking about food?!? Why are doctors trained with only 16 hours of nutritional education?  Why have we abandoned that which saved us for centuries?  Because it doesn’t make us money?  Because drug companies can’t produce it, market it and profit from it?  Because I can grow lettuce in my back yard?  Is that why it isn’t a factor anymore?

And functional medical doctors — the ones who do believe in food as medicine,  and whole body wellness — yeah, they aren’t covered by insurance.  Because that would be crazy, right?  Helping people get better and reducing medical costs would be bad, right?

Writing this blog post won’t change anything.  Systems take more than angry words to topple.  And if there isn’t a better alternative … why destroy what exists?  I’m just frustrated, I’m tired.  I would really like to not feel completely off balance and woozy every moment of every day.

Ce la vie.  Such is my life currently.  God Bless America.

xox, g

I wish I had something insightful to say today.

I don’t.

I feel so overwhelmingly tired.  Every part of my body feels like a one-ton weight.  My arms, my legs, my neck.  My head is screaming with pain.  It is a migraine … something that has become all too frequent of late.

Today felt full … that feeling of eating too much, too fast.  It went by in a blur … and I’m fairly sure I accomplished things.  But not the things I’d set out to do in the morning.  So regardless of how much I accomplished, today feels wasted.  How did I run out of time?  How did I get to the end with so many things unattended?

Perhaps that’s a mental issue I struggle with.  I certainly struggle with perfectionism and OCD.  Two things that dictate my day … doing, being, performing perfectly.  Checking all the boxes.  Doing all the things.

Am I rambling?  It doesn’t look like I’ve written much but my brain is running, overflowing.  I am frustrated by my disease, by the pain in my body I cannot fix, by my unrelenting fatigue and how it steals my time … my days.  Angry at the fog of my brain and the unresponsiveness of my body.

I think about Dr. Markowitz and how he infuriating responds to so many of my concerns … “It could be MS.  Or it could be your age.” A pause.  “Or something else.”

So, um, life? It could be life.  The aches and the pains, the stiffness and the desperate, constant need for more sleep.  Of waking unrested.  Yes.  Life.

I start every Monday with a fresh slate.  I begin again.  I set goals and strive to achieve them.  Hitting road blocks along the way just isn’t my favorite thing.  And yet, here I am.  On Monday.  Exhausted.  Fuzzy.  Ready to be done.

Reframe it.  Find gratitude.  It feels nearly impossible.  But I sat down and I typed.  For the fifth day in a row.  And for that, I am grateful.

Ha!  I did it.

xox, g