Don’t call it a comeback

I got cocky again.

I know. Shocker but hear me out. I had a decent day yesterday. I got through the whole 8 or so hours of my work day without taking antivert. I participated in a day long training session that I actually enjoyed and felt included in even though I was on the telephone and all of my colleagues were together in a room. I thought it would suck and it didn't. I had a good day.

I went to bed super early after reading a few more chapters of my super scary book (another distraction technique). I had cranked the thermostat down to my usual nighttime temperature of 60 degrees and I slept like a damn baby.

But I'd gone to bed after putting the chain on the door – which was dumb because I should have remembered that Kathy would be coming in the morning around 5am and she'd not be able to get in the house. Sure enough my phone ringing at 5am alerted me to the problem. I stumbled down the steps to unlock the door and then stumbled right back upstairs to go back to precious sleep. I knew I was going to try day two without antivert and I needed the rest.

But when my feet hit the floor once my eyes opened for the second time today, I knew I wasn't all together steady. I still decided not to take the antivert. I needed to try. I had plans later that afternoon to go pick up some groceries I had ordered online. My mom insisted on coming with me – just to be sure I was ok. All I had to do was drive a few blocks to the grocery store, call the number and wait for the guy to come out and put the groceries in my trunk. Easy peasy!

As soon as I stepped outside I knew it probably wasn't such a good idea. It was muggy and humid today. The air felt thick. As soon as it hit my skin I shifted into super slow mo. I opened my car door, the car that hasn't been driven in over two weeks, and went to sit down when the wave of dizziness came over me.

"Do you want me to drive?" Asked my mom.
"No, I want to see if I can. It's literally like two blocks and we'll be going slow," I said.

She didn't love the idea but we were already in the car so off we went. It took longer than usual for the air to cool off the car that had been sitting in my driveway in the heat for two weeks. I felt like I was suffocating. But we drove super slow. Every time I turned my head to look at traffic or see if I could turn my stomach did a little flip. We got to the grocery store without incident. I drove through McDonalds so my mom could get her favorite treat of late (iced coffee sugar free vanilla) and I got a vanilla ice cream cone. Then we drove trough the ATM so I'd be sure to have some cash if I was gonna be home and taking deliveries and paying off helpers and such.

By the time we got home, I declared myself a failure. The dizzies were back. I felt like I could lie on the floor and sleep for a year. I had another meeting to get through today and a tentative plan to go in the office tomorrow for a quick company meeting I'd planned earlier in the week when I was feeling optimistic. But after my short foray into the outside world, I quickly realized that driving more than a couple of blocks would be idiotic. I'd be doing that meeting by phone. Goddammit.

I've read all the articles and blogs and talked to all the smart friends and experienced MS'ers about how hard it is to come back from any setback when you have this disease.

I knew, intellectually speaking, that this would be the case after my short hospitalization. But in the back of my broken brain, I always seem to think I'm going to be special. It might be hard for other people, I'd think, but not me. I'm pretty stubborn. I can do things. Lots of things. MS is different for everyone! I could be an exception. I assumed I would be an exception.

I'm an idiot. As it turns out, the only thing about me that is exceptional as it relates to my multiple sclerosis is my incredible ability to deny what's happening right in front of my own two eyes. I didn't really believe I'd be going to the hospital in an ambulance (an ambulance for chrissakes!) until we were pulling into the ER ambulance bay and even then I was still in denial. Every night that I was in the hospital, I'd convince myself that tomorrow I HAD to be going home.

The depths of my denial are really difficult to grasp. I can be laying here in bed at 8:30pm, feeling my limbs give out and my back begin to ache and my head slightly spinning and still wonder if maybe I could be a-ok tomorrow and make it into the office for my little meeting anyway…

…yeh. Not gonna happen. I'm not outside-world-compatible just yet. I'm hoping that after (another) weekend of extreme resting and generally doing a whole lotta nothing, maybe I'll be feeling outside world ready by next week? Maybe?

I guess it's firmly in the wait and see camp right now.

Something knocks you down, in this case quite literally, then the ripples emanate outward into your life like rings in a placid lake hit by raindrops. They get bigger and bigger until they finally disappear and the lake is still, like a mirror, reflecting your own image back at you. The question is, what image is it that you finally see once the ripples stop?

Well. That, too, involves a whole lot of wait and see.

I've mentioned to a few people I've been in telephone meetings with this week how much I suck at patience. I'm not so good at the waiting and seeing game. I'm more the make it happen and change it if you don't like it kinda girl. Maybe that's why I'm good at my job? But this is one very clear example of a situation where taking too much action can put you right back where you started…and we've already established how I will not under any circumstances be going back to the hospital any time soon if I can help it.

Even if it kills me, I need to find my inner zen and wait this shit out. Then I need to take baby steps, literally, before I can really walk. Then I will start PT and little by little I will get stronger – but it will be little by little. That's just how this stuff works.

Sometimes I think this is happening to me because the universe is trying to teach me an important lesson. Slow down. Stop trying so goddamn hard. Just be. Just breathe. I wonder how dense I must be for the universe to think she needs to give me a freaking chronic illness with which to teach me these important lessons. Couldn't the universe have just made me like yoga?

Nah. I'm a "learn the hard way" kind of girl. I will be dealing with these particular ripples for as long as they feel like sticking around and I will just have to accept that.

On the upside…I can read a bit easier and also watch television. I bought some new sticky tread things for my death trap of a shower hopefully making getting clean not so much of a feat. I also have mini-hair and eyebrow day in my kitchen tomorrow evening because my beloved friend and hair wizard knows me well enough to know I need to be cleaned up a bit in order to feel closer to normal and going to the salon right now is also pretty low on the list of things I should be doing right now.

It will all work itself out. I will be ok. I just don't know when. And that just has to be ok.

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.”