1.17.2019

How To Treat An MS Attack With Steroids And Lies


Steroids can fix this, right?


The day before deciding to start a high-dose course of prednisone to treat a flu-induced pseudo-relapse of my Multiple Sclerosis (MS), I went through my usual check-list of pros and cons. I’m familiar with the intense side-effects and general suckitude of steroids at this dose; and if I’m being real, I already knew I was going to take them, but examining the decision felt like the responsible thing to do. 

Cons
  • insomnia 
  • water retention
  • GI upset
  • sore throat
  • temporary insanity
  • my coffee (and everything else) will taste gross
  • I’ll be out of commission for at least a week
  • FOMO – I might miss my nephew’s b’day party
  • am I finally gonna get that fucking hump? 

Pros
  • warm feet and freestyle pees for a few days
  • maybe I can stop this slow-slide to the ground

The day before I pick up my script, I’m still struggling to convince myself that the decision to give steroids a shot makes more sense than to ride it out. I look for dramatic signs of worsening – the weakness and slowness that normally terrify me are now soothing me into believing I’m making the right decision by taking the poison. The magic potion of prednisone has worn off considerably since the days when it would booster-cable me back to my baseline. I’m dealing with a pseudo-relapse instead of an actual MS relapse, and my formerly malleable Relapsing Remitting MS (RRMS) has evolved into a clear case of Secondary Progressive MS (SPMS). A lot of doctors wouldn’t go near me at this stage with steroids, believing that the risks outweigh any potential benefit.

Which is easy for them to say, with their upright, functioning bodies and absence of need for Hail Mary interventions. 

But this fever-induced set-back had me and my doctor concerned enough to give it a shot. 

Here’s how it went down. 

The Day Before Treatment

I make a bone broth, and stock up on applesauce and ginger-ale knowing how badly steroids mess up my tummy. 

Get my hair washed, buy four new books, and go for brunch with The Banker so he can have a recent pleasant memory of me before steroids make me turn on him. 

still vain, tho


Day 1

I cover all the mirrors so I can remember my face as it was. 

This is my first time getting oral prednisone (as opposed to IV), so I text my blogger friend, Beth (Bethy Bright And Dark) to ask for tips, like what drinking games she suggests for swallowing 62.5 bitter pills in 15 minutes. She’s starting treatment the same day as me, and I feel like it would be fun to place bets on which one of us will cry first. 

Day one passes without incident, and feels similar to IV treatment. 

So far, so good.

15 minutes was not possible. It took me 59 minutes to choke these down.


Day 2

I wake up with a headache after 3 hours and 17 minutes of “sleep”, but my legs are so chill I can’t make them seize up if I try. 

My cheeks are pink and for once I don’t look like a corpse. 

I check in with Beth and learn that “Umbrella Holder” is a job you can pay someone to do when you need both hands on your rollator. I marvel at all the ways MS is creating jobs and fuelling the economy.  

Later, enraged about not being able to get up on a chair to reach a high shelf, I hurl an open box of chocolates into an upper kitchen cupboard. In defiance of physics most of the chocolates stay inside the box which only makes me angrier. 


Day 3

The sweet spot of treatment, I haven’t slept and I don’t care. 

My lack of spasticity is the bomb. 

My balance is drunker than normal and my bowels are MIA, but my feet feel gloriously fucking temperate. I decide (and say it out loud) that I would endure this treatment every couple of months just to have a day or two where my feet aren’t confusingly burning and freezing at the same time. 

Realizing I don’t own any red velvet pants, I go on a frenzied online shopping spree. This feels reasonable. 


Day 4 

My three day treatment is over. I do a timed walk that’s half a hallway less than the day before I started treatment. I feel too tired to have feelings about this. 

My new books are still in the bag; I’m too spacey and in pain to read or even watch TV, so I spend time staring at the wall, willing time to pass. 


Day 5

I wake up after 9 glorious (medically induced) hours of sleep.

After an actual bath I slather my legs in special-occasion Herm├Ęs body lotion, because sometimes not wanting to die can feel like a special occasion. 

Just as things are looking up, I watch 2 episodes of This Is Us and feel tricked into a meltdown. I cry my eyes out because Jack, and life, and the Big 3. And. I. Just. Can’t.  

I text Beth. It's a draw. She's melting down too. 


Day 6

My stomach feels like it’s bleeding and I question my ability to make good life decisions. I vow to God and Beth that steroids and I are never, ever, ever, ever getting back together. 

Decide that, for my suffering, I definitely deserve $700 Dior sneakers. 

Don’t actually buy the shoes. 

Maintain I deserve them. 


Day 7

I have to be somewhere at 8:00. In the morning. I knock over my bedside lamp and shatter the bulb into a literal trillion pieces just to give The Banker something extra to do at 7.15, while I lay limp and useless in bed. 

Finally decide to look in the mirror and fail to recognize my stretched and featureless face. 

Notice a new burning pain on my torso and convince myself I have shingles. (I don’t have shingles.) 


Day 8

I manage to leave the house despite feeling weaker and slower than I did before treatment. 

I eat a full meal, including leftover birthday cake from my nephew’s party (that I missed). 

I’m coming out of the effects of the drug, and it’s a huge relief – this was the hardest course of steroids I’ve ever done, but the treatment has failed me. 


Day 10

We have theatre tickets, so I pace myself all day, careful not to blow through too many steps. I take two breaks during the day to lie down for a full hour. 

Briefly wonder if it’s possible that steroids have actually made me worse, but feel too afraid to Google it.

The effort it takes to walk from the apartment to the street breaks me. 

On the way to the theatre I snap at The Banker and cry in the Uber. 


You can't even tell how psycho I am.

I told myself steroids would do something. And that part wasn’t a lie. The lie was that they would do something good. Some small thing to ease the burden of MS; to give me some fraction of increased strength or endurance – even if it’s just a taste; a temporary feeling of how it used to be, or a peek at what potential remains. 

The lie I told myself was that it was worth it. The lie I told myself was that my disease is still modifiable. The lie I keep telling myself is that I have some control or even influence over what direction this thing takes. 


Day 12

I continue to find pieces of shattered lightbulb in unexpected places. 

I appreciate that my coffee once again tastes like delicious coffee. 

I acknowledge that my brain on steroids doesn’t always tell me the truth. 

I try, try, try to believe that just because I’m not yet as strong or as fast I was 5 or 6 weeks ago doesn’t mean I can’t still get there. 

I count my blessings and pack my bikini. I’m spending the next phase of my recovery on a beach with people who love me. And if I can’t walk to the bar, I’ve got Optimus Prime and The Banker to support me. 











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5 comments :

  1. Once, on a run of IV steroids, I bought a truck. I literally, Bought. A. Truck! I am no longer allowed to be by myself when I do steroids and if I have to be left alone, it comes with a strict lecture from everyone who knows me. It’s a nice truck though...and I do still love it....

    ReplyDelete
    Replies
    1. I'm dying. You win.

      Maybe I will buy those shoes...

      Delete
  2. It’s all perspective. Just tell the Banker, $700 shoes or $45,000 vehicle. His choice. We both get the grand prize of MS. Yaaay!

    ReplyDelete
  3. Your description of the side effects is so spot on. Had this treatment twice since diagnosis 1 year ago.

    I often refer to myself as she crying She-hulk.

    Angry yet depressed
    Hungry yet can't eat
    Tired yet can't sleep
    Want to cuddle, need to be alone in the dark.

    5 days of complete personality shift and then I come out of it and feel exhausted but I survived the side effects!

    ReplyDelete