Last week was a tough week.

It began with my phone completely failing and then the replacement phone that Apple sent me (so kindly ~ the full cost equalling a pending charge on my credit card) *also* not working.

Then we moved into a hurricane.  No big thing.  Just eight hours (give or take) without power and many, many road closures and floods.

Following that brilliant beginning, I was lucky enough to enjoy my very first colonoscopy (preceded, obviously, by the truly wonderful prep I had heard so much about).

We had some fun challenges along the way (my mammogram, meant to happen on Monday, being rescheduled for the second time because, really, no one stresses about lumps in their breasts, amiright?!? Then nearly being late for the colonoscopy and endoscopy because a major road was closed and no phone lines were working at 6:30am;  I mean, I’d sign up for another round of prep, wouldn’t you?).  In the end the mammogram happened (albeit this week), we got power back and I survived the most evil night of gatorade drinking known to man. Barely.  (But barely counts).  Additionally, after about eight hours on the phone with Apple and Verizon it was discovered that we were sent an AT&T phone … so, while painful and time-consuming in ways that cannot adequately be articulated, in the end my phone was fixed as well.  Woof.

I often have moments of such utter and extreme fatigue that the only logical way to cope is to cry.  Everything hurts; my head, my body, my eyes.  Everything.  Last week brought me to my knees so many times, I lost count.  And it was just life — not MS.  Which, y’know, likes to jump on bandwagons and make things better.  (Ha).  On Thursday morning I was so delirious from lack of sleep my whole body was shaking uncontrollably.  I just could not get warm.  It took me until Sunday night to start to feel like a human being again.  Even after meds on Friday morning.

It’s very easy to give into the frustration, the anger.  Trust me, I had some moments.  (Like when Verizon’s chat just stopped responding …).  I tried to remind myself that being angry wasn’t actually helping a single situation.  I could be mad about drinking spiked gatorade on an emply stomach, nearly vomitting many times and being unable to sleep or lie down for more than 20 minutes at a time.  But in the end, I had to do it.  I knew that it was the smart decision (my family history of colon cancer = not good.  At all).  I also knew that no amount of anger would change the phone situation.  I just had to keep working the problem until a solution was found.  And eventually … it was.  Power outtages and extreme weather are always jolting (especially if you have a high strung dog who freaks out ABOUT EVERYTHING).

It’s an exercise to let go.  It’s a practice.  It’s something I just keep trying, over and over and over again.  Sometimes I succeed.  Sometimes I fail.  Sometimes I just thank God I’m somehow still alive despite everything.

The bad weeks will keep coming.  The good weeks will keep coming.  If I’m lucky and if I give a little effort, I’ll be able to take a deep breath and step back and recognize everything for what it is.  But it will never get to be easy.  I think it will always be a conscious effort to take the emotion out and understand what I’m wading through.  Cuz when it feels like shit, and it smells like shit, it’s hard to think it isn’t, in fact, shit.

xox, g

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

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