Are Difficult Mornings a Sign of MS Progression?
It’s no secret the world thinks Morning People are better than those of us who dgaf about a sunrise. Never mind that people who own leafblowers and the majority of serial killers are statistically more likely to be early risers.
I’ve never been a Morning Person. I wasn’t even a morning baby, and back then nobody complained. Babies who slept til ten were just called “good” babies.
Despite what society/my brother believes, I don’t buy into the narrative that late-risers are less-than. Waking up like a Victorian consumptive after a fainting spell is just part of my personality. Leave the smelling salts next to the bed and don’t call me before noon. The early birds can keep their worms while I DoorDash an Egg McMuffin and an americano at 10:58 AM.
Lately though, my mornings are getting rougher. Instead of gently coming-to behind the curtains of an antique canopy bed, I wake up feeling like a three thousand pound rhino who has just been hit by a tranquilizer dart.
My circadia has no rhythm. When my alarm (bladder) decides that getting up is imperative, I force my unwilling body into a state of semi-consciousness by reaching for my phone and shining the flashlight directly in my face. This tactic ensures that I will be alert enough to stand semi-supported, but does nothing to mitigate the dizziness, weakness and spasticity that make themselves known as I stagger towards the bathroom. While the Morning People are mainlinling protein powder and answering emails in the dark, I spend the first few hours of my day trying to convince my legs to leg, waiting for 20 ounces of coffee and an anti-narcolepsy med to kick in.
I’ve been suffering in silence for years (not really, I complain a lot) and then I read this article. Research validates that mornings can be worse with MS. In fact, my pre-lunch languishing might even be a sign of so-called “silent” MS progression. (Try to look past the not-tired energy of the article’s image of a woman “eating a light breakfast while preparing to exercise.” What is this, the Olympics?)
According to the study, wearable technology can help identify subtle drops in morning activity. When MRIs are stable, progression that is independent of relapse activity (PIRA) is notoriously difficult to diagnose. My sluggishness doesn’t show up on a 25 ft timed walk test. Probably. I don’t know for sure because I never accept morning appointments.
On the other hand, my phone regulary clocks changes in my movements, sending me super rude observations like, “you’re walking less than you do on a typical day,” or “your steps this month are fewer than last month.”
It can be tempting to dismiss difficult mornings as personal shortcomings rather than signs of neurological damage. Just as we assign a moral value to getting up early, it can feel like certain MS symptoms are character flaws rather than evidence of actual brain damage. Fatigue gets dismissed as not trying hard enough. Cog fog is interpreted as a failure to pay attention. Needing a bit of extra processing time reads like incompetence or stupidity. Meanwhile, lots of people are a little stiff and cranky in the morning.
The good news is that this research suggests my morning suffering isn’t all in my head. It’s in my brain. So, I guess the good news is also the bad news.
Of course, garbage mornings aren’t always a sign of MS progression. Maybe you’re just a b before coffee. “More research is needed to confirm these findings.” But if your mornings feel disproportionately brutal lately, your body (and your phone) might be trying to communicate something beyond, “caffeine, please.” If it takes five minutes to put on pants when it used to take thirty seconds, it may be worth a conversation with your doctor.
When your MRI is stable but things still seem to be getting worse, it’s easy to wonder if the problem is actually you. For those of us trying to navigate silent, insidious MS progression, having our experiences documented instead of dismissed has never been more important.
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Thanks for your email. It helps me feel better and less alone. Hang in there and be kind to yourself
I can say definitively that this research is spot on. I have always been a morning person, I love waking up to the birds and a beautiful sunrise. Yet since my last major relapse I struggle to wake up and get going. I’ve started working from home because I cannot get up and ready to drive into the office in time for my 7 am start.
In previous years I could wake, make breakfast do dishes and still get to work without rushing.
MS has zapped my energy and brain fog has taken over.
Thanks for reading! It has definitely helped me feel more sane, knowing how many others are facing similar challenges in the mornings.
You got my telepathic SOS! Thanks for putting words to what I have been feeling lately. Take care of yourself.
Nobody is talking about this! I appreciate the Bat Signals!
I have definitely noticed over the past few months that my mornings aren’t the delightful experience that many people have. I’ve never been a true morning person, but now my body really drags. Ardra I think it was one of your articles that made the acronym PIRA part of my vocabulary. It freaking sucks.
PIRA is indeed a big fat bummer, but what gets measured gets managed. The MS research community is finally starting to take this kind of progression seriously. Treatments are coming. Keep your eye out for a class of drugs called BTK inhibitors.
Once thank you for verbalizing reality with humour, sarcasm, grace. Giving all of us a voice in the process.
Thanks again, Ardra. Your writings are very helpful.
This is so relatable. I used to be up, showered, dressed, fed and out the door in 20 mins. Now it can take an hour to get the showering bit done! And I will absolutely avoid morning appointments too 🙃
Some mornings are horrendous, spasticity legs while I walk Frankenstein style to get my kids their water bottles and make sure they are getting ready for school. But other days I’m just tired like a normal mom and wishing I could have slept more.
Have you gotten a bio marker blood test? It has helped give me some peace of mind, because my MS symptoms are in a constant flux and it’s hard to know if it’s old damage or a relapse. Luckily, knock on wood, it seems to be the smolder of old stuff.
I’ve always been a morning person, but it hasn’t always been easy even so. MS did indeed make mornings (and everything else really) worse. BUT, and I hate to throw the “A” word out there, but how old are you now? I know, you still look like a young thing who is still wet behind the ears to me, but there are the insidious creepings of perimenopause to consider perhaps, plus MS IS considered a form of accelerated aging. You know, on top of…aging.
At some point it all looks like crap though, and no one can tell which part of your life is hosing you – MS, age, hormones. It’s just a stew of “we have no idea”.
I just know mornings had gotten increasingly difficult and not remotely pleasant (arthritis rearing its head, perimenopause, headaches, etc) long before I was dx’d with MS. But then I was over 50 when I was dx’d, so we’re back to “we have no idea”, or some early 30-something doctor condescendingly saying “Well, as we age….” (eyeroll – lucky I’m usually too fatigued to him them with my cane)
Sleep in as long as you body doesn’t start rebelling at too much sleep. I know I’d love to be able to sleep later, but I feel actually worse, if I do.
I used to be a morning person. Now it is a rare occasion when I can get up and go or do.
Thanks so much, Ardra, for this article. I was first dx with RRMS in 1985, and transitioned to SPMS probably about 15 or 20 years later.
I laughed and related to your comment about the idea of getting door dash for breakfast and coffee delivered at what some people call lunch time.
Keep writing and singing opera whenever you can!
My neuro told me over a year ago that one of my symptoms – not being able to write properly – was aging not MS. Thank you, young whippersnapper! 😝
Although I dismissed it, lately I’ve been thinking this morning crap was also age related, so reading it may not be is a little comforting. Thank you, Ardra!
Doesn’t help me shake off the morning drudgery, but maybe striking it off my list of MS things I worry about will help!
How is your phone telling you that you moved less? Is it an app? If so, can you please share what it is?
Hi! You may identify some of your losses but your writing ability doesn’t show any loss, it might (?) take longer it it is good! It describes very clearly what many with ms may experience. It can be so important to make our experiences heard, thanks, Kathy
As always, your insightful & pithy comments help me feel sane.
Ohh Ardra my mornings are definatly brutal.
I too was never a morning person only waking up a few hours into my day. But in those days I could function still half asleep. Now … I have a time functioning awake.
I can blame some of it on the zopiclone , mussel relaxers ,lyrica and whatever else I can find to use to knock me out at night.
I use to think the waking up feeling like a sack of shit type of thing was from a different quality of sleep that progressive MS’ers get is not the same as healthy people get ,or there’s a sleep wire crossed somewhere. I use to think MS was a theif in the night and it all happened while I slept or was in a trance that I called sleep. And the progression ravaged away at me.
But on a lighter note for the morning people their day just goes down hill from there.
Ours on the other hand well things could get a bit better.
The real bad ones are waking up like a bull dozer just ran over you and it don’t get any better than that
But every now and then I have a good sleep , wake up with a bit of energy , a new lease on life a changed man ready to try anything thinking wow. a new day , new beginnings new accomplishments and then oh yeah I feel it now It’s the same old shit. Hang in there Ardra it’s got to plateau sometime.
Thanks for sharing your experience, Richard. I hadn’t really considered the bright side of the day getting progressively better. It also helps seeing how many others are struggling with the same issues in the mornings. Lately I’ve been resisting getting up at a “normal” time. I will get up to use the bathroom, read for a bit and then let myself go back to sleep, maybe not getting out of bed until 10 and it is actually helping a lot. I mean, it’s not convenient if I need to be somewhere, but I’m not crashing in the afternoon and I’m not as dependent on modafinil. We do what we have to do!
Oh thank you thank you for this blog post!