Drunk Texting, MS Edition

Names have been eliminated to protect the innocent. And the not-so-innocent.

Another shit body day. Pain everywhere. Legs whack.

Before I went to bed last night, I sent a lengthy email to The Great Scott (TGS) inquiring about this whole thing we call a “relapse” and telling him I think I’m actually having one. New symptoms that last longer than 24 hours? Check.

As soon as I hit send I got that same feeling I used to get after finally giving in and sending the text to the boy I shouldn’t be texting after a few too many glasses of wine. I’m referring to that nearly instant desire to somehow physically enter the internets or the airwaves and pull those words back. No sooner did I hit “send” on my email, I felt this horrible regret. Like I just admitted something embarrassing by admitting that my body isn’t working properly. Maybe he will wait a day or two to respond, just like the recipients of drunk texts of yore, just to leave me hanging in angst for a few more hours. I anticipate his answer being the usual “Well, Maribeth, that’s just your MS suck it up buttercup.”

Well. He wouldn’t say it quite like that but his dry tone and sardonic twinge will feel like he just said that. Truth is, I really like The Great Scott. I feel lucky to be in his care. He is the great and powerful, of course, and somehow the universe delivered me into his care. The universe knew I needed this neurologist, one who would be willing to listen to my endless arguments about science and his lifelong specialty and not just dismiss me. He argues with me.

Ask anyone who knows me. I need to look at every topic (good or bad) from every angle. Maybe it’s the writer in me, this obsession with motives and reasons but whatever the reason, there it is. TGS has lively discussion with me even when he vehemently disagrees with me.

I also worry, though, that he just wants me to shut up and accept things. I know evil nurse Carol certainly does. I know I’m projecting. I know they probably never think about me at all until my name appears in the list of unread messages and one or the other or both look at it and sigh and think to themselves, “Jesus. She’s still trying to understand the un-understandable” before typing a polite (TGS) or a terse (evil nurse Carol) reply. I know this is their job and I’m kind of like their client. I sometimes shudder when I get certain emails at work. I know how they feel.

I just don’t know if they can possibly understand what it feels like to go to bed so many nights in a row (at least a week) wishing and hoping and yearning to wake up and feel not quite as bad as the day before. I’m not even asking for feeling good like I felt before all of this shit hit the fan. I just want the regular bad. Like the pre-two-month-flush level of bad. I’d take that.

Now I lay me down to sleep, I pray the universe my pain to keep. If I should fall when I get up to pee, I pray the universe sends someone to help me (who doesn’t care about my mismatched pajamas).

That’s not how that prayer goes. But it’s what I got right now. I wish TGS and Evil Nurse Carol (suddenly she deserves capitalization to me for some reason) could know how much I want to help them understand what this is like each night. And how it feels to wake up another day with numb hands, weak legs and a back that feels like it’s on fire knowing that the universe has said “sorry sunshine, this is what you get” yet again.

It’s so much like the drunk texting the wrong boy feeling that it’s almost uncanny. That feeling of, oh shit! I shouldn’t have done that. Now he knows I care. Now he knows I’m not strong and mighty and over the whole thing, especially over HIM.

NOW HE KNOWS.

And I’ll be on those same pins and needles tomorrow checking my email with numb hands waiting for the boy’s response.

Or will it be from Her. That’s kind of like old times too.

4 thoughts on “Drunk Texting, MS Edition”

  1. I so understand this feeling. I just called and left a message with the neurologist asking if there is anything I can take to lessen the muscle twitching days which are followed by a week of muscle pain and joints that won’t work correctly. Now I am sitting here wondering if I should have called at all, and if they will tell me I need to suck it up. I am currently on no medication because they want to see ” more disease progression first”. Makes me very hesitant to ask for something. I am still very thankful that I am better off than most with MS.

    1. Mine called me back this afternoon. It’s more steroids for me. I can’t say I’m looking forward to it. It’s hard to say if the side effects are worse than the MS symptoms were in the first place.

  2. I’m reading this blog in my bathrobe at 3 o’clock in the afternoon. I told my husband last night that I thought I was having a relapse. I hate admitting it. I hate even saying that word. In six days I leave for Seattle to start series of regenerative stem cell treatment called SVF- a registered clinical trial that is having huge success. I’m choosing this therapy because I wasn’t a good candidate for HSCT. Admitting that I’m having a relapse feels like defeat. Like I’ve done something wrong. Your blog helps me remember that it’s not our fault and that we didn’t choose this and that all we want to do is feel how we found when we weren’t so bad.

    1. I’m so sorry you’re feeling crappy too. This truly does suck. I need to know more about this treatment you’re getting. Where can I learn? Is there a web site I could check out? I’m pretty newly diagnosed (not even two years yet) but I seem to be progressing quickly and it scares the shit out of me. I would love to hear more about your experience in Seattle. And I wish you the very very best.

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