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When Illness Forces You to Back Out of an Event at the Last Minute

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Should I stay or should I go? Not just song lyrics but the mantra of all who are chronically ill (or “medically complex,” “chronically fabulous,” “seriously unique?” Pick your favorite). Picture this… you have an event, commitment, celebration, something you’ve been looking forward to. You’ve circled it on your calendar (does anyone actually do that anymore? What’s the modern equivalent in the digital age? Highlighted it in our iPhone?). You’ve debated about your outfit, maybe even dragged yourself to the, dare I say, mall?!, to find that “perfect” look for the big day.

Because you’re “medically fabulous” this isn’t an easy task. The fabric needs to be just right so as not to not to disturb your overly sensitive skin (damn overactive nerve ending from the fibromyalgia). Prednisone has caused that “six-month pregnant looking “ belly bloat so certain styles are out. Shoes are a bit of a nightmare as the shooting pains from the neuropathy make walking in even the best sneakers feel like, to quote the Annie Lennox song, “Walking on Broken Glass.” Yet, despite all of these odds, you’ve found the outfit for the event (perhaps even multiple outfits because you’re not sure if you’ll have bruises or fresh marks that need to be covered from the frequent blood draws). You’ve planned your week ahead to prepare to save your “spoons” to be prepared for the day.

mother and daughter dressed up at a concert
With my daughter Lizzy before the “Rockapella” concert

Then… despite all of your plans, prayers, best wishes and good humor, life happens. Last night was one of the “bad nights.” For me, poor sleep = a horrific next day. In other words, whatever you had planned for the day, Miss Amanda, kiss it goodbye. No nap can make up for getting an adequate full night of sleep when you are chronically ill. Sleep is crucial for rebuilding your mind and body, even more so when you are ill.

Fibromyalgia and lupus don’t do well when you don’t give them their sleep. They tend to fight back in ugly ways. The shocks of pain feel like someone has a voodoo doll and I “done them wrong” in some way and they’re loving the payback. The brain fog is so bad that I’ve spent 10 minutes trying to figure out a good analogy to finish this sentence and can’t. (No lie, ask my daughter who’s sitting next to me asking what I’m writing about and why I’m staring off into space.) Where was I – oh yeah, brain fog. Seriously, I got distracted and truly forgot!

Today’s “event” isn’t until 2 p.m. so you start doing the mental calculations and try to play the “bargaining game.” “It’s 10 a.m. now, if I take a two-hour nap, I can eat a really healthy lunch, take a shower, have time to get dressed, rest in between each step and get out the door in time.” In my dream reality, or for someone without multiple chronic illnesses, this is a piece of cake. Take the nap, jump out of bed, breeze through the shower, ease into the outfit, fix the hair and makeup and out the door – easy peasy.

mother, father, daughter and son at the son's bar mitzvah standing in front of a cake

Now comes the reality. Even if you somehow managed to fall asleep right away (which has never happened) you still need to climb up the flight of stairs to the bedroom because if you fall asleep on the couch, without your CPAP machine, you will wake up with a raging headache and horrible sore throat (as well as waking up several times a minute due to stopping breathing (the joys of sleep apnea) leading to a not so refreshing sleep). So, you drag up the stairs, try to find a comfortable position despite the determined voodoo doll holder’s continued machinations of evil (whatever I did, I’m sorry!) and maybe fall asleep.

The alarm goes off all too soon and you wake up, usually drenched in sweat, another lovely side effect of prednisone (seriously, why are there no fabulous side effects like “may cause you to be able to play the cello” or “may cause you to win the lottery?”). More often than not, you feel even worse than you did when you lay down before the nap. If you can drag yourself up it’s a veeeerrrrrrry sssslllllllooooooowww processss. Muscles ache that you didn’t know you had. The very thought of a shower conjures memories of ancient torture devices as the water hitting your incredibly tender skin is agony and lifting arms that feel like lead to wash your hair is an impossibility. Since your balance is always unsteady in these situations, a shower can actually be downright dangerous and you’ve been meaning to install that shower bench but never quite got around to it. (OK, admit it, it’s a bit of a source of pride. Which is silly since you’ll be seen in public with a cane but won’t shower in private with the help of a bench?!)

Some days, often with the help of a friend (or in my case my incredibly patient and helpful husband) you can overcome these obstacles and make it to the event and maybe even enjoy it (you’ll pay later!). The “spoon fairy” delivers the needed spoons and you make it through, borrowing from tomorrow, and maybe even the next day. You got up, got dressed, showed up and have the memories, pictures and can savor the victory over the beasts of the illnesses.

Sadly, today isn’t one of those days. To paraphrase – “the heart is willing but the flesh is weak.” This flesh is very weak. This flesh needs rest. This whole body needs to not move from the bed for many, many hours, uninterrupted sleep or the repercussions could be disastrous. When you push the body past its limits the inevitable flare can mean more time in bed out of commission (missing more events) and even time in the “white coat hotel” a.k.a. hospital (trust me, I know this only too well).

But the rest of the world doesn’t stop because you do. Everyone else goes to the event and you’ll see everyone enjoying themselves via social media. Once again, you witness the event as an “outsider,” on the sidelines, missing out through no fault of your own. You reason with yourself that you have nothing to feel guilty about, yet you can’t help feeling like once again you’ve let people you care about down. If you’re lucky, those people understand and try to assuage your guilt (my kids are amazing about this and will say, “Mommy, you rest! Daddy will take a video of the concert and we’ll watch together later.”). It helps some, but you know deep down that every event you miss separates you a little more from your core group, be it family, friends, community. In our generation of “pictures or it didn’t happen,” the fact that you’re missing from the event pictures is just another reminder. Always there in black and white (or color) is your status as present or absent, marking your attendance in an invisible book of judgment. Those who understand, understand and forgive. Those who do not understand will hold this latest absence against you. For some, it may be “the final straw.”

All of us with chronic illnesses have lost friends over the years and for many it was because we were viewed as “flaky,” “unreliable,” “unsupportive,” “too obsessed with your health” and more because the healthy sometimes can’t understand this battle we face. We may have seemed fine earlier yet then cancel plans because we’ve simply “run out of spoons.” We may have talked excitedly about attending the event and planned for weeks or even months to attend only to have to cancel at the last minute. Those friends and family who truly understand how hard it is for us to have to make that call, send that text, saying that we can’t make it yet again and don’t add to the guilt we are already feeling, are worth their weight in gold. Even better are those who know that when we make plans it’s always with the caveat of “if you’re up to it, if not, I understand.” Perhaps those are the most important words we need to hear – “I understand.”

woman sitting in bed and drinking a milkshake
Sometimes, you stay in bed and a milkshake is dinner.

So today’s event may not have worked out. The spoon count was too low, the odds were not in your favor. You will get the rest you need so that you can hopefully recover enough to be present for tomorrow’s events, big and small. You can cry and be bitter – that’s your choice. You can wallow in the self-pity of the fact that life is not fair and like Cinderella, you never get to go to the ball. Or, instead, you can feel sad for a bit, mourn the fact that you are missing another event, acknowledge those feelings, take a moment to grieve your old life, your “healthy pre-illness life.” What’s key is what you do next.

For me, I’ve found I need to be kind to myself. When I feel that rotten physically, beating myself up emotionally (guilt, anyone?) isn’t productive. I try to make the most of that needed time in bed. Streaming a good movie I’ve wanted to see, catching up on TV shows I couldn’t stay up for during the week, reading a book or magazine all make that time of recovery more enjoyable. Some friends swear by aromatherapy, others knit, have a favorite heating pad or pass the time doing crossword puzzles. Find your “happy place.” So, if anyone needs me today, you can find me with my softest blanket, curled up in my bed with multiple pillows and that book I’ve been meaning to read.

Originally published: March 29, 2018
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