MS Fatigue is More Than Being Tired.

My mental clock wakes me up before my real alarm gets its moment to rudely scream at me at 5am. I’ve been getting up this early for almost 25 years now. Back then I worked catering at the World Financial Center downtown, right across from where the Twin Towers once stood. Funny how the body remembers schedules longer than joy sometimes.

My eyes shut for another minute or two. I gotta do a pre-check-in first.

What hurts today?
What feels new?
Can I make it to the bathroom without pissing all over myself this fine morning?

I’m running as fast as I can with my walker. Running over anything standing in my way. Legs stiff. Right leg refusing to bend like we got beef. I’m almost there.

Hold it five more seconds, please.

Made it. Only a tiny drip on the briefs. We call that victory now.

Next mission. Feed the cats.

All three are singing in unison like a furry church choir. We got altos, sopranos, and Hendrix doing a guitar solo somewhere in the background. Between the ice maker dumping cubes and the faucet dripping into the sink, the apartment sounds like EDM recorded deep in the jungle.

Their desperate meows make me anxious. One grabs my shorts. Another gives me a little warning bite on my calf like, “Sir, the service here is terrible.” I promise them I’m moving as fast as I can.

Once the felines are fed, I debate making coffee for myself. I gotta measure the energy cost first. Sometimes a large iced coffee feels less like a beverage and more like an investment decision.

By the time I take my morning meds, I already need to sit down and rest.

Believe it or not, doing all this tricks me into thinking I’m okay. Like maybe I still got this.

That’s the lie though.

Walking back to the living room to catch up on current events, getting dressed, putting socks on, taking little breaks between each step. Socks alone feel like a CrossFit challenge designed by Satan. Then the pants. Pants take everything out of me.

Well, maybe not everything. My fingers still work enough to play a game or two.

By 5:45am, I’m spent. I wanna crawl back into bed underneath my cooling blanket and disappear for a while. Depending on which medication I take, the sleepiness hits hard. The kind where your soul starts buffering.

I kill time waiting for my ride by watching YouTube or playing video games for an hour or less.

Then comes the part that drains me mentally before the day even starts.

The descent to street level.

I got a stair lift. Sounds fancy until you realize it only handles about 75% of the journey. I still gotta manually survive five more steps. My beautiful wife goes ahead of me and assembles my wheelchair outside because there’s no space for this operation in our second-floor walk-up.

By the time I get into Access-A-Ride, I’m usually knocked out cold. An hour ride feels like five minutes because my body shuts down whenever it gets the opportunity.

Sometimes Access-A-Ride feels like unwanted stress delivered directly to your nervous system. So I say a little prayer every morning before work.

I try getting there early because Access-A-Ride loves arriving late. Or dropping you off late. Or both if the universe wants entertainment.

Once I’m at work, I don’t waste time.

I straighten things up. Make sure the pantry looks good. Snacks stocked. Beverages lined up. Milk ready for coffee. Coffee addicts are peaceful people until you interrupt the supply chain.

When everything’s in order, I reward myself with a second iced coffee and check emails.

I love my job.

There are things I don’t like, but not enough for me to leave.

By 11:30am though, I need rest. Real rest. The kind where two hours of sleep still feels like somebody forgot to charge your batteries. My tired is different. I can sleep deeply and still wake up exhausted.

Lately I’ve been forgetting things at work. Small mistakes. Stuff I should’ve caught days earlier. My manager reminds me I’ve been there almost a year and I’m still making mistakes.

I don’t take it personally.

I know it’s not all me.

MS likes attention too. It likes reminding me who really runs things around here. And it enjoys showing off sometimes.

I hate making mistakes. At my last job I was the superstar. The guy people depended on. So this version of me feels like an ego punch straight to the throat.

Am I scared of getting fired?

Hell yeah.

Losing this job would hurt our household badly. I try not to obsess over it, but the thought visits me often enough to unpack a suitcase.

There isn’t one moment where I completely forget I have MS.

I’m reminded by my mood. My energy. My weakness. My attitude. The discomfort under my skin. The urge to disconnect from stressful situations eight times out of ten.

In the beginning, the speed of all the changes scared me. Then something strange happened.

My spirit accepted it before my mind did.

This is what it is now. This is how we move. Adapt when necessary and keep going.

For a long time, I carried guilt about not doing all the things I used to do with my family. I wished for more vacations. More years in the gym with my son. Another trip to Universal Studios. A few more years at my old job.

When I got diagnosed, my first thought was, “Great. I’m gonna die slowly.”

MS isn’t a death sentence.

But it does feel like a life sentence with parole pending.

I don’t think I’m a great patient either. I could be doing more. Eating better. Exercising harder. But from what I’ve seen, nobody fully reverses this thing because they started drinking kale smoothies and doing squats twice a week.

There’s no miracle pill waiting for me.

For me, the greatest medicine is protecting my mind.

And honestly, that’s the hardest part.

I’m still human. I still deal with stress, fear, insecurity, doubt. I still obsess over feeling less productive. Less useful. Less than.

Lately I’ve realized I need to change things up a little. Life started feeling like a loop. Wake up. Survive. Repeat.

I love learning new things.

I don’t know how much MS plans on taking from me, but I refuse to exist without purpose.

Working gives me purpose even on the days I don’t wanna go.

I started thinking about taking online classes. Maybe transferring my skills into another field. Maybe learning the cannabis business.

Honestly, I wouldn’t mind being a budtender.

As somebody with a medical card, I know how important it feels when somebody actually understands what helps your body. Somebody who understands terpenes, strains, oils, edibles, flower. Somebody who listens instead of treating you like a transaction.

I love helping people.

I love creating community with people who look like me, think like me, struggle like me.

Maybe this becomes something new for me one day.

Maybe helping others becomes part of my healing too.

Maybe I finally enter a field where illness isn’t treated like an inconvenience hidden behind HR smiles and corporate motivational emails written by people named Todd or Barbara.

I try hard to keep hope alive.

Truthfully, somewhere deep inside me, things feel hopeless sometimes.

I still pray there’s a cure one day. Hell, I’d take a 50% cure if it meant I could walk to the corner store by myself and buy a turkey and Swiss sandwich and a lottery ticket like a regular guy.

Some people may think I’m tired and giving up.

That’s not what this is.

I don’t think I’m giving up.

I think I’m learning how to survive differently.

And maybe survival deserves more respect than people give it.

Because some of us wake up every morning already exhausted and still choose to participate in life anyway.

That has to count for something.