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.”

 

 

 

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