Life has been challenging.

Not just for me, but for the world.  It has been difficult for people (especially, it seems, Americans) to get past partisan lines and understand that this disease doesn’t care who you voted for, will vote for or what you believe your rights are.

But  … life has also been challenging for me.  It happens, right?  You think you’ve got it figured out, you’ve found yourself in a groove, and then suddenly, nothing makes sense, nothing works anymore.

I’m tired.  I’m always tired, so when I write it, there’s no strength to it.  No power.  But I keep saying it and I keep typing it because it is the world in which I exist — where every choice is about energy, about focus, about consequence.  If I ride the bike early and take a shower, I have a whole day ahead of me in clean clothing with nothing hanging over me  … but I’m wiped.  I move like I’m drifting across the ocean floor in water … everything is slow and fuzzy.  Time-delayed. r Most things make sense but I have to work to get there.  I am tired.  If I work, run errands, do chores etc  in the morning and put off the bike until the afternoon, then after my shower I just have to sit down, eat dinner and veg.  But it means I’m in work out clothing all day.  There’s always something I have to do hanging over me, I’m always checking the clock.  And these are the days that my body hasn’t decided to throw a wrench in things and switch up ‘the norm.’

The last few days have been a struggle for me.  I mean … just a struggle.  I am a type A person and I like results; I like actionable items.  I like steps that lead to solving a problem.  I have built my MS life around this idea that every problem has solutions.  It’s just about working through the list and seeing what fits on that particular day.  It is very … very frustrating when the list doesn’t work.  When google has no alternatives.  When you are just stuck in a body that has resolutely refused to work.  Sometimes I’m angry, sometimes I’m  defeated … oftentimes I want to cry with despair and frustration.

And sleep.  Sleep is always good.

xox, g

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