I’ll be sitting at my laptop, working, writing, answering emails, maybe just thinking about writing while actually scrolling through memes, and then poof… I disappear.
Not slowly, like that cosy afternoon nap you give yourself permission for. I mean one second I’m here, and the next, gone. Like someone unplugged my brain. Then just as quickly, I jolt back. Blink. It’s over. The dog’s still asleep. The kettle’s still humming. But I’m sitting upright at my computer, wondering: Did I just fall asleep while working? And it happens more than once; these strange glitches come in clusters. I can be pulled out of them if the phone rings or if someone touches me, like my nervous system is waiting for a jumpstart.
I’ve had a few of these episodes now. They’re not dreamy or floaty or warm. They’re hard and fast and jarring. And they scare the shit out of me.
When you live with MS, every weird body glitch carries a question mark. Is this just MS doing its daily chaos routine? Or is this something new? I am always scared of something new because in my support group, my fellow spoonies will say, “It’s never just one disease,” or “Once you’ve got one, you’ll get more.”
Please, no.
MRI (Eventually) Incoming
I haven’t actually made the appointment yet. I know I need to. But I’m still in the bureaucratic limbo of:
A. Figuring out whether my medical aid will cover it (spoiler: only a portion, yay South African healthcare).
B. …I forgot what B was. I genuinely had it a minute ago.
Anyway. MRI, neurologist, those are on the horizon. Somewhere between the load shedding schedule and the next cup of tea.
And I’ll admit it: I’m nervous. Not because I expect a terrifying result. I’ve already got a brain with white spots and a spine full of screws and wires. But I need answers. And the options on the table are… not exactly comforting.
Here’s the shortlist:
MS fatigue, aka “lassitude,” which is a fancy word for soul-sucking exhaustion that hits like a tranquillizer dart. It’s not “you need a nap” tired. It’s “my brain is melting” tired. I don’t know how to explain it to people who have never experienced it. Closest is, imagine you’ve been awake for 142 hours and your veins are full of cement.
Microsleeps, which are tiny, sneaky, involuntary naps that last mere seconds but could happen while I’m sitting, reading, or, terrifyingly, driving.
Narcolepsy, which I don’t think it is, but hey, add it to the menu of potential plot twists.
Or, worst case, seizures, though mine don’t come with confusion or post-episode fog, so that seems less likely. Still, it’s on the board.
What’s the difference, anyway?
I did some digging because I’m me, and medical rabbit holes are my weird comfort activity. Here’s the deal:
MS Fatigue: Creeps in slowly, can last days, weeks, months (yup), worsens with heat or thinking or breathing. It’s not fixed with sleep; you just have to wave a white flag and collapse.
Microsleeps: Happen instantly and briefly. You might not even realize it’s happening. They often show up when you’re bored, tired, or doing something repetitive. Like, say… staring at a screen trying to earn a living.
Sleep attacks: Similar to narcolepsy, these come on fast and can make you collapse mid-sentence. (Not happening here, thank god.)
Seizures: Usually longer, often come with confusion or memory gaps. (Not me. I come back online almost too fast.)
So what’s happening with me? I don’t know yet. But I do know this: it’s unsettling. So much so that Bugsy seems to pick up on it and he lies next to me quietly till I’m back before carrying on with his 18th zoomie of the day.
The Mental Load of Not Knowing
This is the part they don’t tell you when you’re diagnosed. Not just the disease, but the never-ending detective work. The constant second-guessing. The mental calculus of “Should I worry about this now or later? Or never?”
It’s exhausting. And honestly? Sometimes it’s lonelier than the actual symptoms.
But I’m trying to do the responsible thing. See the doctor. Get the scan. Ask the questions. Start taking rest breaks (who has time for this?) and hydrate (not so easy when your throat muscles are experiencing spasticity).
Things I need to do:
Rest with intention: Schedule quiet breaks, not just flopping on the couch. Phone off, eyes closed, even if it’s just 10 minutes.
Temperature matters: I keep a fan close by. Heat makes it worse.
Bedtime boundaries: I HAVE to get stricter about bedtime; even though I want to binge British murder shows till 2 a.m., I simply can’t. A good night’s rest is imperative.
Talk to my doctor: Not Google. Not Facebook. Not an Ai medical app. Get actual help.
I’ll update you if/when the MRI happens. I’m claustrophobic and terrified of going in that damn thing. Maybe there’ll be news. Maybe it’ll be “just fatigue.” Maybe I’ll get a fancy new Latin diagnosis to add to my collection. Who knows?
In the meantime, I’m still here. Still working. Still trying. Still curious.
Once upon a time, I was a Nice Person. I’d smile politely while someone explained my own diagnosis to me. I’d hold the door open for strangers and wait while they slowly shuffled through, unbothered. I’d listen to that one friend monologue about her sugar detox while I silently wondered if I could fake my own death to get out of the conversation.
But that version of me is gone. She perished somewhere between the fifth unsolicited wellness tip and the third time someone said, “But you don’t look sick.”
And in her place? A delightfully irritable, short-fused, boundary-setting badass who no longer has time for bullshit, big or small. This is my official Villain Era™, and it’s sponsored by chronic illness, menopause, and a bottomless vat of nope.
So, without further ado, here’s a lovingly curated list of Things I No Longer Have Patience For:
1. Loud Chewers & Public Speakerphone Users
If your jaw sounds like gravel in a washing machine, or you’re broadcasting your break-up on speakerphone in public — congratulations, you’re the reason I believe in selective extinction.
2. The Door You Left Open
Did you not feel that icy blast? Is your soul so shrivelled you think we enjoy sudden indoor tornadoes? Close the damn door before I throw a salt lamp at you.
3. Unsolicited Advice from Non-Experts
Unless you’ve lived in this meat-suit and have a PhD in neurology, keep your spirulina suppository and moon-water testimonials to yourself. I’m not your pet project. I’m just trying to buy avocados in peace. Keep your seaweed smoothie cure to yourself. And no, Susan, yoga will not reverse brain lesions.
4. The Phrase “You Don’t Look Sick”
Well, you do look stupid, so I guess we’re even.
5. The Cult of Beige Instagram Moms
If your child has a capsule wardrobe and your playroom has mood lighting, I assume your soul has been traded for engagement. Let those kids wear Crocs and chaos like the rest of us.
6. “Everything Happens for a Reason”
Unless that reason is “you’re a carbon-based life form on a rapidly decaying planet,” keep it to yourself. Some things are just… shitty.
7. People Sitting Next to Me When There Are 100 Other Empty Seats
This isn’t a hostage situation; you have options. And yet you chose my airspace? I didn’t survive a pandemic just to share elbow room with your tuna wrap. Why. Just why. Are you okay? Blink twice if you’re in distress.
8. Trad Wives Cosplaying the 1950s (Badly)
You want to obey your husband and churn butter on camera? Go wild. But don’t pretend your ring-light lifestyle is actual tradition. Real trad wives didn’t have OnlyFans. (me-owe!)
9. Chronic Illness Gatekeepers
If you’ve ever said “just be positive” to someone in pain, I hope you step on a Lego every Monday morning for the remainder of your time here.
10. Mainsplainers & Creepy Flirters
I used to nod. Now I say “That’s creepy AF dude” and walk away while maintaining eye contact.
11. People Who Know Me Better Than I Do
Newsflash: I’ve been in this body a while. I don’t need you to explain my symptoms, my limits, or my mood swings. Especially not during peri-fucking-menopause.
12. Covid Opinions
Still? We’re still doing this? Pass.
13. Thieves of Parking Spaces
That space was mine. I will trap you in. I will go Fried Green Tomatoes on your bumper. Do not test the rage of a middle-aged woman with perimenopause and pain.
I don’t know if this list makes me petty, evolved, or simply tired, but it feels delicious to get it out. There’s a joy in drawing the line. In saying “no thanks” without apologising. In laughing at how little crap I’m willing to take these days.
And maybe that’s what real healing looks like.
Your turn: what’s something you no longer have patience for? Drop it in the comments. Let’s be gloriously petty together.
The long, deflated breath you let out when you finally sit down: spine slack, eyelids twitching, coffee gone cold beside you. The breath that says I’ve had enough, even when your to-do list screams more. And then, like clockwork, comes the guilt.
Shouldn’t you be doing something?
Something productive. Something useful. Something Instagrammable. Something heroic. Something that makes you look less… weak?
Rest, in this world, is framed as failure unless it’s earned. And even then, only just.
The Hustle is a Cult, and We’re All in It
We live in a culture where burnout is a badge of honour. Where busy-ness is virtue, exhaustion is currency, and rest is treated like dessert, a sugary reward after you’ve swallowed the meat and bones of your suffering.
But here’s the uncomfortable truth: rest is not a reward. It’s a right.
And yet most of us, especially those who care for others, live with chronic conditions, juggle invisible workloads, or simply exist in survival mode, don’t believe we’ve earned it. We need to be told. Given permission. Prescribed it like paracetamol.
I still catch myself apologising for needing rest. I soften the language. I say, “I’m just going to lie down for a minute,” instead of “I’m shutting the world out because I’m completely depleted.” I say “I’m tired” instead of “I’m in pain.” I say nothing at all and power through, because who wants to be the fragile one?
It’s a scam. And it’s killing us slowly.
The History We Inherited (And Didn’t Ask For)
We didn’t create this culture of grind. We inherited it: a system shaped by generations of economic pressure, industrial ideals, and a culture that confuses rest with laziness.
Historically, rest wasn’t just discouraged, it was denied. To the enslaved. The poor. The working class. Productivity was a measure of compliance. Rest was resistance.
Today, even self-care has been co-opted. It’s no longer about replenishing the soul, it’s about selling face masks and bath bombs to the already burnt out. Even our downtime is expected to be photogenic.
And if you live with a chronic illness? Rest becomes your entire life, and somehow still, people expect you to justify it. To prove you’re not just lazy, flaky, or attention-seeking.
Rest is Resistance
Audre Lorde said it best: “Caring for myself is not self-indulgence; it is self-preservation.”
Rest is not about quitting. It’s about surviving a system that rewards overextension and punishes stillness. It’s about reclaiming softness in a world that demands sharp edges. It’s about trusting your body over your inbox.
Rest is how we remember we’re human.
What Rest Actually Looks Like (Spoiler: Not Always Pretty)
Let’s get something straight: rest isn’t always wrapped in silk pajamas with lo-fi beats in the background. Sometimes rest is ugly. Messy. Loud. Sometimes it’s:
Crying in the bath until your sinuses are clear.
Saying “no” without offering an excuse.
Sleeping in clothes that aren’t pajamas because that’s all you could manage.
Letting the dishes wait.
Cancelling plans, even with people you love.
Turning off your phone.
Doing nothing, not meditating, not manifesting, not improving yourself. Just… nothing.
Real rest is not aesthetic. It’s sacred.
You Don’t Need Permission, But Here It Is Anyway
If you need someone to say it, let me be the voice:
You are allowed to rest. Not because you worked hard enough. Not because you’re falling apart. Not because you ticked every box. But because you are a living being. And living beings need rest.
No one questions a dog for napping in the sun. No one asks a tree to bloom year-round. But somehow, you, with your spiralling inbox and shrinking patience and bones that ache when it rains, are expected to keep going like a machine.
You are not a machine. You are not a machine. You are not a machine.
Let the World Wait
The revolution isn’t in the doing. It’s in the being. It’s in saying, “Not today, thanks.” It’s in horizontal activism; in naps, in stillness, in choosing slowness when the world demands speed.
Rest isn’t the opposite of action. It’s what allows us to continue.
So lie down. Log off. Let the world wait.
It can handle itself for a while.
And if it can’t? That’s not your fault either.
Tell me…
Do you struggle with guilt when you rest?
What’s one way you’re reclaiming rest in your own life?
Should we start a nap revolution?
Let’s talk in the comments, but only after your nap.
A journey of learning to embrace life with compassion and care for myself.
When I was diagnosed with multiple sclerosis (MS) in January of 2023, my focus was anything but myself. Providing for my household, caring for my children, caring for my patients (I’m a Registered Nurse), and securing a home for my disabled mom were a few of my top priorities. I had no real concept of self-love. I refused to accept the diagnosis for a full year, trying to live life as I always had. This was until one day, as I struggled to climb the stairs at work after a 12-hour shift, it dawned on me that I was fighting my very own body instead of working with my body to fight MS. I had to learn to love myself enough to set boundaries and care for my vessel as much as I did others.
Self-love involves accepting yourself fully, treating yourself with kindness, and prioritizing your own well-being. For those of us with a diagnosis of MS, practicing self-love is essential in coping with the physical and emotional challenges provoked by MS. Here are a few ways I practice self-love.
1. Cultivating a Positive Mindset
Living with MS can be overwhelming, but adopting a positive mindset can help navigate the journey with resilience and hope. Embracing self-love encourages a shift in focus from limitations to possibilities, fostering a sense of empowerment and optimism.
2. Managing Stress Effectively
Stress can exacerbate MS symptoms, making it crucial to develop healthy coping mechanisms. Self-love practices such as mindfulness, meditation, and deep breathing can reduce stress levels, promoting relaxation and calmness.
3. Prioritizing Physical Health
Self-love involves taking proactive steps to maintain physical health. Regular exercise, a balanced diet, and adequate rest are vital components of managing MS. Listening to my body and responding to its needs with compassion was most difficult but lead to improved overall well-being.
4. Nurturing Emotional Well-Being
MS can take an emotional toll, leading to feelings of frustration, anger, sadness, depression, and anxiety. Self-love encourages individuals to acknowledge and honor their emotions without judgment. I went through the entire grieving process before embarking on my journey to self-love.
5. Setting Realistic Goals
Self-love involves setting realistic and achievable goals that align with our individual abilities and circumstances. Celebrating small victories and progress creates a sense of accomplishment and motivation, contributing to a positive outlook on life.
6. Practicing Self-Care
Self-care is a fundamental aspect of self-love. Engaging in activities that bring joy, relaxation, and fulfilment can enhance mental and emotional health. I like to do activities in my garden, such as yoga, reading, and meditation. I’ve also become more in tune with nature, taking more walks and appreciating its beauty. Listening to music, dancing, and indulging in self-care nurture the soul and promote balance.
Living with multiple sclerosis is undoubtedly challenging, but the practice of self-love offers a powerful tool for navigating our journeys with grace and resilience. By embracing self-love, I have a sense of empowerment, hope, and well-being, transforming my experience into one of growth and self-discovery.
Hi, I’m Nicole. I’m a mom to 3 and registered nurse by profession. I was diagnosed with multiple sclerosis in January of 2023 after a case of optic neuritis, which led to vision loss in my left eye. I recall experiencing symptoms of MS as early as 2016. I now use my knowledge as a RN as well as my experiences as a MS Warrior to educate, uplift, and bring awareness to the “rare” autoimmune disease known as Multiple Sclerosis.
This morning, before I’d even opened my eyes, I knew. Not from a calendar reminder or a “you’re due for a flare-up” ping. Just the weight of my own body. Heavy. Cement-heavy. Fire-in-my-veins heavy.
Welcome to the delightful surprise party that is chronic illness. No RSVP needed. You just… wake up in it.
The Flare Days You Don’t See Coming
Some flares sneak up on me. Others kick the door down and announce themselves with full-body spasticity, shooting nerve shocks, and hands that feel like they’ve been beaten with hammers. Today it’s the latter.
My feet and calves are twitching like live wires, and my hands are stiff, aching, and protesting even this act of typing. Vision? Blurry. Pain? Electrical. Plans? Cancelled.
And here’s the kicker: I used to ignore this. I’d push through. Slam a Red Bull, down some coffee, and throw myself into work like I was invincible.
Spoiler: I’m not.
Before Chronic Illness, “Rest” Was an Afterthought
Rest used to mean feeling guilty. Lazy. Weak. I grew up in a culture of “hustle harder” and “push through the pain.” Rest was what you earned once everything else was done, except everything else was never done.
So I’d rest, sure. For twenty minutes. While scrolling. Or I’d lie in bed with my laptop, answering emails like a good little burnout-junkie.
Turns out, that’s not rest. That’s just horizontal productivity.
Now? Rest Is a Ritual
Rest is no longer a break; it’s a boundary. It’s a ceremony.
The bed is made, properly made. Soft, high-quality linen. No scratchy textures. My skin is too sensitive, and my nervous system too fried, for anything but comfort.
Sounds of nature fill the room. Crickets. Forests. Sometimes just silence, blessed and still.
Lavender floats through the air, either from a candle or a diffuser, because my brain needs cues that it’s safe to exhale.
Baths with Epsom salts when I can manage it. Lavender-infused again. Heat is magic. Fun fact: so is Lavender.
And always, always tea. Sometimes a fancy store-bought herbal one, sometimes a wild little blend of whatever’s in the fridge: fresh ginger, honey, lemon, mint, berries. I long for a proper teapot with a built-in infuser. I’ll get it one day, fingers crossed.
There was a moment, a real one, when I realised: rest is not a luxury. It’s not a nap. It’s not working from bed. It’s not multitasking with a heating pad on.
Rest is permission. Permission to shut off. To stop proving yourself. To not be available to everyone all the time.
I finally saw what my body was begging me for: clear boundaries. Not “I’ll just do this one last thing.” Not “It’s fine, I can take that call.” But a full switch-off, emotionally, physically, and mentally.
Friday to Monday. No clients. No guilt.
Just… recovery.
If My Body Could Speak…
It would say:
“You call this rest?! Give me real rest or I’ll force it out of you.”
And honestly? Fair.
Because my body has forced it out of me before. Through flares. Through burnout. Through collapse.
Rest Isn’t Weakness, It’s Wisdom
If you’re living with chronic illness, or even just carrying too much life in your bones, you don’t need permission to rest. But I’ll give it anyway:
Let your rest be lush. Let it be soft. Let it be sacred. Let it be enough.
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