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.