The blog post that almost wasn’t

Not my real desk. Not my real writing. I actually journal with an app these days. I’m so tech savvy.

By now, if you’ve read anything of this blog you know that I am a daily writer. I’ve written in a journal for over 20 years. I have stacks and stacks of paper books full of my scribbles. These days I use an actual app and I journal on anything – my phone, my computer and my iPad. Along with my Precious (aka my therapist Cheryl), I don’t have much hope of remaining quasi-sane without daily journaling.

Writing is cathartic for me. It’s something I do because I need to do it – not because I want to. I can’t not do it. So imagine how happy it makes me when you guys tell me you like reading something I’ve written. It’s beyond anything I could have ever wished for.

I started putting my personal writings on this blog because I needed a community. I needed to find people like you all that I could learn from. Real people with real MS who were bound to be so much better at managing this disease than I am at present. I have great doctors, I really do, but it shocks me to this day how The Great Scott, while clearly one of the very best among MS specialists out there, still doesn’t quite get it. I know this every time he asks me, “When did you last walk a mile, Maribeth.” I resist throttling him mostly because I like him and I need his big brain.

Unless you have MS, you can’t possibly understand what it feels like to have it. You can empathize and listen and love and help. I’m grateful for all of those around me who do these things consistently every single day. But you also need a community. So I found one. Props to http://www.trippingonair.com/ for being my original inspiration to take my writing public. You should check her out. She wins awards and stuff and is one of my personal favorite MS bloggers out there.

All of that said, I still write in my journal things that I need to deal with in writing first and foremost for myself. Things that are private (believe it or not, I do keep some things private. Not much! But a small few topics). After infusion #2 of the new goo (Ocrevus for the newbies) I found myself struggling to write Musions on My Newest Infusion #2, which would have been the next logical blog post. I went to bed, tired to the bone from the juice, but not able to sleep. So I did what I usually do when that happens. I wrote in my journal.

This morning, when I’d read over what I wrote to myself last night it made me realize that I needed to share it here with you all, as well. It was the best description I could give about how I felt about this infusion #2. So I’m repeating it here (verbatim, no editing so there’s probably a million writer mistakes included).  I should first apologize for this marathon long blog post. Folks that get through the whole thing might just be super human! People generally like short pithy posts, or tips or hacks or whatever. That’s not me. Oh well. Gotta be me.

So here it is:

It was infusion day today. Big number 2.

I haven’t blogged about it yet but wanted to talk about it here, with myself, because I’m already in bed too late for getting maximum rest before attempting to both shower AND get to the office tomorrow but my brain is in overdrive. (Probably that tiny pinch of steroids injected into my bloodstream today is making sleep elusive.)

It would be notable if I accomplished those amazing feats I mention above but I’d been hoping to get the same little boost I got from Ocrevus the last time (really the first time) and when I’m feeling unrealistically optimistic, I do stupid things. Things like emailing my entire staff and telling them I’m going to be focusing on getting into the office more after infusion day number 2 is in the bag. I may or may not have committed to being in the office tomorrow. The very first day after my big nearly 8 hour day at Allegheny General’s infusion center.

Not all that smart, am I? No you aren’t that smart, Beth.

I feel like I need to kick myself in the ass. Hit restart. I gave myself until this day, big infusion day number two, to stop believing this body simply can’t operate in the outside world as a regular, if slightly ability challenged, human. Today will be over in a few hours and I feel like I have to try harder to make it happen, to stop my brain from undermining every single little thing in my life.

The trick is, figuring out how to do that without trying so hard that I kick myself back into relapse again. Or fall (again). Or end up in the hospital (again). It’s really difficult to determine where that line is. My nose is still a bit purple! It’s literally as plain as the nose on my face, one might say, that pushing too far without realizing it can have dire consequences.

How far is too far? I honestly don’t know and that scares me. But there’s a feeling that comes over me. The feeling of a good day. I haven’t had one in quite a while but it hasn’t been so long that I’ve forgotten what it feels like.

It’s not specific to any symptom. It’s not just how I feel when my feet hit the floor in the morning and I walk a little easier. It’s not a sudden burst of energy. It’s not a lightening bolt when you look back on the day and realize you weren’t popping Advil like Skittles. It’s more like a slow realization that the pain suddenly is not quite as painful. It’s a feeling of lightness. A feeling of safety. A feeling of peace. It never lasts very long, at least not lately. But it’s the good place.

Those are the days when my MS is quiet.

The thing I always fail to realize on a good day is that the constant noise in my head is somehow not there. It usually runs on a loop in my brain daily. “I can’t I can’t I can’t I can’t I can’t…what if? what if? what if? what if? always always always always always… it hurts it hurts it hurts it hurts it hurts I won’t I won’t I won’t I won’t I won’t…” Repeat. That voice allows MS to put a veil over life that makes everything slightly less vivid. Slightly less clear. Slightly less appealing. Slightly less possible.

I don’t know how to stop that voice. I’m probably stupid to give myself some kind of clear line in my own personal sand to test myself. To force myself into action. To present myself with an actual date.

Take a shower. Leave the house. ON THE SAME DAY. Believe it works and it will work. Allow yourself not to be scared.

It all sounds so inspirational and like so much bullshit. It could actually BE too hard. I might get out of the shower tomorrow and feel like my limbs are suddenly made of over cooked pasta. I might fall down when my feet hit the floor when I get out of bed. The world around me could suddenly be spinning like a crazed whirly bird. I might throw up again. I might have something entirely brand fucking new like not being able to see right or one or the other side of my entire body suddenly going completely numb.

Any of that could happen. That’s what this crazy ass messed up disease actually does to our bodies. And it’s entirely unique and different for each of us. We can relate to each other (us who are in this strange club called multiple sclerosis most of whom are my digital friends, but not all). It helps to know that someone else had a similar thing happen to them that one time…but that only goes so far. Your MS is your MS and until you look it in the face and make some kind of friends with it, every day will be a complete and utter surprise. I literally have no idea from minute to minute, second to second, moment to moment what my central nervous system has cooked up for me with her girl Friday (my immune system). I have to just accept it. I am almost two years into this mess and I’m shocked that I still haven’t accepted it.

Listen. Here’s the bottom line. Every day is a complete and utter surprise even for people that don’t have MS. My unpredictability is almost better than theirs, all of those normals I mean, because mine has a name.

Theirs is just called “life” and holy shit that’s the scariest disease of all because it also changes moment by moment. I used to be one of them (a normal) and i know how I felt. I thought I knew how my life would change for a million different reasons…I had a plan. I was reasonably smart and I worked so very hard and made such important plans. I would tell myself that by being a good, kind, loving human being I would have my happy little place in the world. Things would go my way. They had, for the most part, so it was an easy myth to believe…But I didn’t know. None of us has the first fucking clue what’s going to happen on any day of the week. We just think we do. I know!

Maybe when I look my named disease in the face and accept all of that chaos I will begin to accept that disease isn’t always ugly. It has facets and eccentricities just like we all do. I think I know what it’s going to do. It’s going to destroy me. It simply has to. That’s why it exists! But maybe there’s more to it than that. Maybe disease can be a teacher. Maybe I can learn how to stop thinking the teacher is a mindless dolt, and start listening to her.

Or maybe I can’t. I honestly don’t know at this point in my own personal evolution. I have no idea what’s going to happen next. And neither does anyone else. This might sound crazy but that’s the part that makes me feel better. That I know that fact to be gospel-according-to-beth-truth. We never know. We never have known. It’s always been a complete crap shoot. And it still is.

Will I shower and go to work in the office tomorrow to triumph over the gauntlet I threw down for myself?

The truth is, I don’t know. I know I will try that’s all I know for certain.

Post Script:

My original plan was overly ambitious, after all. My day started today with phone calls at 7:30AM and then call after call after call until it was 3PM and I still hadn’t showered or brushed my teeth. I did make some important things happen with all of those calls so it didn’t feel like a failure to me. I just had to suck it up an accept that I was being overly ambitious.

It’s a good thing too. Because I did finally shower around 3:30 PM and that shower kicked my MS-having ass. I never would have been able to get done what I got done today had I attempted to go into the office after an early shower, as I so foolishly planned for the day after a rough infusion experience.

I know it will take some time before the new goo makes it’s magic. I’m there in my head now. But now that I’m finally physically clean? I’m going to the office tomorrow. Baby steps are still steps in the right direction. I’m giving myself a much needed pass on not holding to my commitment to be there today. In the end, I’m trying. I’m trying so very hard! That has to be enough.

New flash: I still have MS

The eye roll emoji has become my favorite lately.
Here’s the thing: If you’ve had MS for years and you’ve gone through these early years of highs and lows and more lows and lower lows before and you’ve come out the other side with a more even keeled way of looking at the world and your disease, I envy you. I envy you a lot.

Being on this teeter-totter of symptoms, emotions, life crises, lost days, quasi-hopeful normal days, more frequent ultra shitty-shitty days is not fun. It’s hard to know how to feel from one moment to the next. Because I had a decent couple of days this week (now I am realizing that were very likely caused by my hit of that magical substance Solumedrol and not some fast-acting miracle of the new goo), I decided to try getting back to my old routine.

I went into the office three days in a row. I moved around more than I have been able to do in weeks. I showered and got dressed and went into work with clothes and makeup on. I felt weird, but OK, so I went with it.

I packed up most of my office in preparation for our office move later this week. I took a few walks down memory lane, looking at old pictures and remembering my 14 years so far with this company, fondly. I went home at night tired. I went back in the morning. I managed.

Here I am at the end of the week realizing something pretty obvious. I don’t feel that much better at all. I just fooled myself into thinking I did because I wanted to so badly.

I realized this as a result of two things that happened today that are undeniable evidence that I do, indeed, still have MS:

  1. Evidence the first: I managed to get myself to my MRI appointment at 7:45AM this morning without incident. I had to get this appointment in before my next Ocrevus infusion as ordered by The Great Scott, and Saturday morning at the ass crack of dawn was my only option between now and my next infusion. I did fine. I listened to the banging and the humming and the thrumming of that horrible machine for half an hour and then I was done. I got myself a post-MRI souffle (my favorite early morning treat) and came home to climb back into bed. And then I proceeded to sleep until 4:30PM.  I slept all damn day. I struggled to force myself awake because I knew I should. I dragged myself to Target to get a few things I needed but mostly just to get myself out of the house before I fell back to sleep again. Halfway through my trip to Target my legs started to do that thing they do – that shaky, heavy, dragging thing they do – and I was grateful to have the cart to hold on to. I had to rest in my driveway before unloading. I felt defeated.
  2. Evidence the second: A little later, I was emptying the Litter Locker on the second floor because it had gotten too full and I needed to start a fresh bag. I began my descent down the steps carrying my big bag of kitty poo, my bottle of water (always in my hand) and my phone (also always in my hand) and stepped down the first step…and promptly fell on my ass. I fell backward. Back on to the hallway floor. I dropped the bag of kitty waste (thank the good lord above that the bag didn’t break). I dropped my phone and my water bottle and landed flat on my ass on the floor. I just had to sit there for a minute to collect myself. Then I grabbed the bag of kitty waste and proceed down the rest of the steps. I had to go back up for my water and my phone. I couldn’t manage all of those things at once. I did NOT get hurt. I have ample butt padding that I really just sat hard on the floor, not really a fall at all, more like an unexpected sit. I just hadn’t planned on sitting on the floor so hard in that particular spot at that particular time so I guess it surprised me.

I came down to the living room and realized, I don’t have any energy again. I slept all day. I did almost nothing. And I am about to go to bed again. I wanted to paint my nails. I don’t have the energy to paint my nails. Or watch television. Or do any other thing I was going to do on this Saturday night. I am going back to bed and I’ve barely been conscious a total of four hours so far today.

It gets demoralizing, all of the hoping and having the hopes dashed again. It gets exhausting pretending to feel OK when you don’t, and wanting really really badly to get back to your old routine and then realizing that your old routine wears you out to the point of falling flat on your butt out of nowhere sitting, stunned, on the floor beside a giant bag of poop.

I know there is hope. I know I’ve only had half of one dose of the new goo. I know all of it. I just felt good-ish for a couple of days and it made me really happy to feel like that. Going back again, so soon, is kind of crushing. Like I keep getting reminders that I do, indeed, still have MS as much as I would like to pretend I don’t. Nothing works that fast, nothing really works to eliminate existing symptoms at all, really. It’s only going to keep me from getting worse.

I wanted to feel better so badly!

And that’s why I envy you, mature-in-disease-years MS people. I envy your level headedness and your long view. I envy your earned ability to take all of this in stride because you’ve been dealing with it for so very long, it’s just normal to you now. I envy your ability to frankly accept that no good day means ALL good days (just like no bad day means ALL bad days). I envy your ability to manage all of this and not let it get you down. You accept it. It just is.

My old life is too close in the rear-view mirror for me to accept all of this just yet. Objects in mirror are indeed closer than they appear.

I still fight it. I resist it. I don’t want to believe that this is just how it’s going to be now. Forever. It’s just how it’s going to be. No highs will last and no lows will be always. The teeter-totter is life. There is no adjusting. There is only accepting your complete and total lack of control over just about any little thing.

Sometimes I can. Sometimes I look at this and think…Well, we all have to learn this lesson in life somehow. I just have a disease to force me into it. Other people will have to learn it too because all control is an illusion. There is no control. I learned this once before. I am learning it again. They (the normals) will have to learn it too, someday, it just might not be as obvious to them as it’s happening, like it is to me. This is the single lesson of life none of us can avoid.

Taking the high highs and the low lows in stride is the secret to life. It’s definitely the secret to successfully having multiple sclerosis.

I am looking forward to being a sage old MS’er some day. Where I will look fondly at newbies like me and think to myself, “Ah! I remember when this was so hard every day. Thank god those days are over.”