You Either Get Better or You Get Bitter

I don't want to be inspirational, I want to be an ordinary person. 

Those words go through my head every time someone tells me I "am an inspiration".

As I have stated before, I was diagnosed with MS many moons ago and chose to ignore that diagnosis.  That is until almost 30 years later it came screaming back in my life, telling me I could no longer ignore it.  It has altered the very essence of me.  Trying to figure out if that is good or bad.

The conversation I had this morning with my husband got me thinking hard. It came after he asked me what my plans were for the day and smart ass me quipped back, Oh running a marathon, driving cross country, ball room dancing....

Seriously though? What is it that I do everyday?  What has my life become, who am I even??  I am trying to find me again. He even said he missed me. I miss me. But I guess I miss the old me. The me who could drive, pick up and go and do.  Who could run, maybe not well, ride a bike and fall off sometimes, who could swim, who could do Crossfit enough to keep me in shape, who could drive and not be a danger to anyone on the roads.

Then I thought back to my meditation this morning. It was so relevant to that thought. What’s that? You’re wondering if I really meditate? Well yeah I do. I have to, in order to maintain my sanity. All part of this new me. 

Believe me when I say I didn’t choose this new persona. Not trying to be all New Agey.  Just making sense of the deal I am dealt. That “shit sandwich” as my husband so eloquently, and correctly, coined my new reality. 

So in order to find me and figure out what it is I do, I started thinking of how things are now. How a day goes in my life, trying to think if it is so different.  I wake up, bladder screaming at me.  Not that big of a deal is it?  How inanely normal.  Not so much, the part of getting up and in to the bathroom in time, so that I am not reliving my two year old reality, is the stuff that no dreams of mine are made of anymore.  The song from that Christmas special, just put one foot in front of the other, comes to mind. See walking isn't something I do mindlessly these days.  I have to consider every step or I can fall, it isn't automatic and that is exhausting in itself.  

Then I go back and lay there in bed.  I am so unbelievable lucky that I have a husband who brings me coffee every morning.  But there is the part of me that wants to go downstairs, let the dogs out, make breakfast for my 17 year old and send her off with a "have a good day".  The things I was lucky enough to do for my other girls. That is not meant to be most days.  The days I manage to are the days that end with me falling asleep on the couch that night.

We have *gasp* stairs in my house.  What's the big deal right?  As I have said before, stairs are no friend of mine.  I hold on, taking each step slowly and deliberately and hope my left leg doesn't decide to revolt as it is wont to do these days.  I thank God every time I make it down the stairs and don't fall.  I also do as few trips up and down the stairs as possible every day.  Why tempt fate?  Knock wood I haven't fallen yet, so why tempt the powers that be by multiple trips up and down the stairs?

First thing I do once I get downstairs is take my meds.  Yes, my world each day is remembering to take my medicine.  Thankfully, or not thankfully I haven't figured that one out yet, I don't have to take a daily disease modifying treatment twice a day anymore that if you miss a dose you can trip an exacerbation.  I do take "the walking drug" as it is called, to help with my walking and it works for me. I was one of the lucky 30% it does help, but if I miss a dose of that, it won't hurt me.  I have been switched to a pretty intense drug, one that hopefully will stop the disease progression more than the last two drugs I was on.  At least this one isn't making my hair fall out by the handfuls or make me flush so badly that it feels like someone set me on fire and rolled me around in broken glass.  BUT this one, which is an infusion every six months, has the lovely possible side effect of causing breast cancer.  Isn't that great?  Hopefully, that doesn't happen, hopefully it helps, but no DMT is 100% effective, so let's toss those MS dice again....

Time to start my day downstairs. I tidy up the kitchen, throw in a load of laundry, or some other mundane house hold chore that I am overjoyed to still be able to do, I usually overheat with all I try to do so I start staggering around feeling like I just got off the Tea Cup ride at Disney. Now I have to make myself sit.  Until the world stops spinning, or I feel stable on my feet again.  

I still work, I do everything from my home office, or have work brought to me to do.  But what took a day to do once upon a time now takes three.  I cannot just do work things mindlessly anymore because I have done the same tasks for years.  I have to check, recheck, and recheck my work to look for mistakes.  They still happen, but are way less common now that I have a system figured out to reduce error.

As a person who used to love working out, I continue to try.  That comes after work stuff.  I am lucky to have a fully kitted Crossfit gym in my garage, and a Peloton.  It try to lift three days a week and ride 5 days a week.  Plus I do Yoga or stretching.  All of this is supposed to help my fatigue.  I know it helps my mental health.  Speaking of fatigue?  I am one of the lucky ones who fatigue hits, and hits hard.  Some days, when I wake up?  I feel as though I ran marathons in my sleep.  No amount of sleep helps that.  By the end of the night, after dinner is done?  So am I.  I sit with my feet up and a cup of tea.  I am trashed.  Like I did back, to back, to back Ironman triathlons.  That's when walking gets super fun.  I usually hold on to things as I make my way around.  I refuse to use my cane at my house.  

Things like going to church?  Yeah, that doesn't happen anymore.  It's hard when you can't really drive, but I avoid crowds and germs like the plague, literally.  I never understood the people sounding like they are struggling with tuberculosis, hacking their brains out, trying to make their way through mass.  Believe me when I say I am sure God would understand if you missed church because you were sick. Plus, you're not thinking of the people like me, whose immune systems are being altered.  People like me who could wind up in the hospital because you had the Flu but HAD to go to Mass and sing so everyone can think, WOW there's a good Christian person, suffering like that and still here! Believe me when I say, you're impressing no one.  I haven't been in awhile and am trying to foster a meaningful relationship with the Lord on my own, without putting my health in harms way.  A friend of mine on Instagram posted something about God not wanting visitation only on weekends.  That struck a cord with me because I am struggling with my cradle Catholic guilt over missing mass while trying to foster a better relationship with the Almighty on my own.

My family is wonderful, they constantly try to step in and help me out.  I have to admit I get like a toddler more often than not though.  I want to scream at them "I do it!!"  and stomp my foot.  I hate how much of my life is gone, please let me do stupid stuff, especially if I am in the throes of it.  I am not a fragile doll, but I know they see me struggle, struggle with the fatigue and over doing it.  I know they just want to help. I would do the same for them, and still try to. But I hate feeling like an invalid.  

Ok, this is devolving into me sounding bitter and angry.  Yes, there are some days I am, not gonna lie.  But most days?  Thanks to daily gratitude and meditation practicing? I understand how lucky I am.  I know people, people I regard highly, who are living the nightmare of losing a spouse, or of having had a seriously sick child.  Things that are way worse than the reality I am living.  I see people on their giant hamster wheel of want, toiling away every day trying to be better than the Joneses or have the most toys at the end because they think they are winning, but truth be told? I feel sorry for them.  They have no idea how blessed they are, they are missing the simple things.  

Seeing how excited my grand daughter is to see me? How she runs to me arms outstretched when she knows she will just be sitting in her Nee's lap, eating gummy bunnies, singing her favorite songs? Or having my Ant sharing his secrets like he wished he could fly or he wished he was invisible so he wouldn't have to take a bath anymore as he is snuggled up next to me? Those are things that bring such happiness, and it doesn't matter if my legs are working the way I wished they would. I get it now.  There is nothing better than these moments as simple as they are.

When my new neurologist at Johns Hopkins asked me what I hoped to accomplish being treated at their MS Center, it didn't take long for me to answer.  I said, "I want to walk my dogs again, I want to chase after my grandkids, I want to Cupid shuffle with my girls in my kitchen one more time.  He smiled and said that none of those were unreasonable or unreachable goals and we devised a plan to hopefully get me there one day.  I should have said I want to walk in my heels again too lol!

I actually said to Brad not too long ago that in some ways MS has been a blessing for me.  That it woke me up to the fact I was missing the good things around me.  I don't need some expensive handbag or a fancy car to make me happy.  Each and every day is a gift when I get up and CAN see, CAN walk to the bathroom, CAN make my way downstairs, CAN sit in my roly chair and still make some bitching dinners that my family raves about.  That I am surrounded by family that loves me the way they do.  I am blessed beyond measure, and I no longer miss that fact at all.  My happiest and best times, I am surrounded by my whole family, eating dinner, bantering back and forth.  I usually just sit back and feel like I have to hold my heart together or it might burst.  We are having both the Grandmas here for Thanksgiving this year, something we are so incredibly lucky to do.  It is going to be a Thanksgiving that we will cherish forever!

I still struggle, once again, not lying there.  I know my whole family does, we miss the stuff I used to be able to do.  So I guess that's where we are looking for "me" and missing "me".  There are so many better things about me now though.  Things I forget while I wallow in the quagmire of the past, wishing for the things I used to do.  That is me not keeping present, not enjoying my now.  So much is wasted on that, too much energy, which I have precious little of.  How terribly human of me.  

As I re-read what I have written, I have to smile.  I am glad I see the beauty all around me most days, glad that I have learned to be gentle with myself on the days I don't, and glad to have learned to eat this "shit sandwich" I have been handed on the best bread possible.

So maybe it's good I have lost me, well part of me at least.  Because it seems to me, a better part of me is here enjoying each minute that I can.

"She made broken look beautiful and strong look invincible.  She walked around with the universe on her shoulders and made it look like a pair of wings" ~ Ariana Dancu