There’s no What to Expect when You Have Multiple Sclerosis guidebook. If there was, it would be about a page long. All it would need to say is something to the effect of, “Hold back the edges of your gowns, ladies….we’re going through hell.”
Or, just as succinctly put, it would advise patients to “expect the unexpected.” Which has definitely been my life of late — zombie walking, random body parts losing sensation, conspiring limbs making me accident-prone, blindness, marathon sleep sessions, brain lapses, emotional outbursts (See, I have a medical reason for my clumsiness, stupidity and mood swings now!).
What a roller coaster, right? Only if that roller coaster included swilling down a Percocet with a Four Loko, then we’re coming close to being in my territory.
I’ve had to adjust my life in ways large and small since September, and I’m sure I’ll be thrown for a few more loops. I feel like I’ve aged 50 years in these five short months, from the pill popping to the sleep schedule to the early suppers and from the slow driving to the Matlock watching.
Change is the only constant, sure. But it has surprised me how people have altered their interactions with me.
So here’s a little primer on how to handle my hot mess-ness nowadays, although it is completely subject to change (there’s that word again!).
Don’t automatically assume I can’t do something. Give me a chance to prove that I am completely inept. After all, failure builds character. And who couldn’t use more of that?
Don’t tell me about about your friend who died from MS. I mean, I am sorry for your loss, but I am vulnerable and can’t feel my toes and really don’t need the bejeezus scared out of me right now.
Flip side, don’t tell me about someone who was cured of MS. It hasn’t happened. This is not me being negative when I say there isn’t a cure. You can get your exacerbations under control with the right medicine and have a remission lasting years, but there is no cure. Yet.
Don’t feel bad if I don’t feel up to doing anything. Or if I have to cancel last-minute. It’s not you. It’s most definitely me.
Don’t shut me out of your life. Just because I’m struggling doesn’t mean that I don’t want to know when you’re struggling. I mean, I have to have something to feel better about before returning to my couch to wallow in self-pity.
Flip side, don’t make everything all about you either. And don’t try to compare your struggles with mine. (I’ll probably win.)
Don’t make me walk if I don’t have to. Most days I only have so much stamina, and I don’t want to use it all up before noon. Think green and conserve my energy! This one is dedicated to my long-suffering better half: Same goes with laundry. And dishes. And pretty much any household chore.
Do keep giving me medical advice and tips on a healthier lifestyle, but don’t be put out if I don’t adopt them. I have to do what’s comfortable for me.
Do stay in contact with me. I’m not much for gabbing on the phone nowadays (It zaps energy, and besides, I’m probably watching TV and don’t want to be engaged in an activity that requires brain power) but I obviously like to write. So message me.
Do take your cue from me. If I seem grumpy, it’s probably because I’m operating on three hours of sleep and my head feels like it will split in two at any second and my hand is STILL numb. Proceed with caution. Otherwise, consider it OK to laugh and joke around me.
And do walk with me this April, or at least cough up some petty cash. (A shameless plug about the MS Walk, which I hope to take part in.)
And don’t judge. I just wanted to include that. Imagine me saying it with a head-eye roll. And probably snapping my fingers.
One, Wild & Precious 
I can absolutely relate to all of these. For me the worst is number two on your list. Thankfully, that and the number three have lessened as time has worn on. Keep your head up!
Another great post. All right on point. As different as MS is for each, it’s also the same.
This is worth framing and placed on the front door or any wall of the house or … on one’s foreward. Then again the latter would probably not work with a frame. But there are some real-life truths in what you say here and you say them well. So sorry that this has become your reality … at least in some moments.
Your list could be mine! And I’ll be waiting for you to write that book!
I will do the walk with you! (Unless you happen to be too tired that day, of course. Which I would completely understand!)
You know I’ll be there! Fer too probably. The walk is usually pretty short. Last year it was from the pavilion @ the river market to the clinton library and back. Of course, if you don’t feel up to walking, you can always just show up & give your support.
I’m down with walking with you — or for you as the case may be!
This will be my blog post tomorrow:
A cognitive slip,
I published a comment and
then saw the mistake.
It did not matter
I proofread it more than once.
Something still slipped through.
I wrote foreword when
I really meant forehead.
That’s just one I’ve caught.
If I give you a dollar, can I avoid the walking? I have a condition, genetic; I was born with an extra joint in my leg bone, between my knee and hip. It’s not painful, but causes me to walk like a praying mantis. Where do I send my dollar?
Another incredible post! Well said and so spot on. Thanks, Jenn.
Jenn, I just wanted to let you know that I came back to this post to give it to a friend who wanted tips on how to help a newly-diagnosed MSer. With a heavy sigh, thanks!
Thanks! It pretty much sums it up, huh?