Powering up…

 Life with a deluxe Power Bar

It’s still very early.

I’m not 5 weeks out from finishing a seven-day ketamine infusion for the chronic pain condition I’ve lived with for the last 15 years, so I’m trying not to get ahead of myself or declare victory too soon.

But something has happened that I haven’t experienced in a very, very long time.

I have energy.

Not “I drank a coffee and managed to get through the day” energy.

I mean ACTUAL energy. The kind where you wake up and don’t immediately feel like you’ve already spent everything you have.

The kind where you can do something physical and your first thought afterward isn’t, Well, I guess that’s me done for the day.

And, most astonishingly of all:

My pain is gone.

My nociplastic and somatic pain has been at zero. Not reduced. Not “better than usual.” Zero.

After more than a decade of living with pain that had become so constant that I stopped remembering what its absence felt like, I am having pain-free days.

I honestly don’t know how to explain what that feels like.

Imagine you’re travelling

I’ve been trying to explain this to friends, and the best analogy I’ve come up with is a hotel room.

Imagine checking into a hotel at the end of a long day to find there is only ONE electrical outlet.

Unfortunately, it’s behind a dresser.

So you have to move the dresser every time you need to use it. And when you finally get back there, you discover that only one of the sockets actually works.

But you have a laptop, a phone at 6%, a portable battery charger that’s dead, a CPAP machine and the lamp is currently plugged into it.

All of them are important. All of them are necessary. All of them need power.

But there is only one working outlet.

So you have to choose.

Do I charge my phone?

Do I plug in my CPAP so I can sleep?

Do I turn on the light so I can see?

Do I charge the laptop so I can work tomorrow?

You can choose only one, and every choice has a cost.

That is what life with my illness and disability has felt like.

I could function, but only by constantly rationing the very limited resources available to me and never more than one thing at a time. Obviously the power to that one outlet isn’t metered or rationed, it’s in there. Sometimes it was choosing to get dressed OR brush my hair, both was too much. One time I stood in a dental aisle picking up toothbrushes and comparing them by weight, because the weight of my toothbrush often felt like too much to bear.

If I used my energy to work, I didn’t have enough left to socialize.

If I pushed myself physically, something else suffered.

If I spent everything I had getting through the day, there wasn’t enough left for the things that made me me.

And the cost wasn’t just physical.

It was personal.

Relational.

Professional.

Reputational.

Financial.

It changed how I saw myself.

It changed how other people saw me.

I remembered telling my counsellor about years ago—before illness— how a friend once asked me “how do you do it?? you’ve got two kids, go to school full time, work, run a children’s ministry, answer every email - sometimes before they’re even in your inbox, and still show up smiling and offering to do more?!” 

I shared it with her because I often ask myself “where did that girl go?!?”. Sure I was tired at the end of the day, but I woke up each morning with fully charged and ready to take on the world.

Illness made me question my own reliability, my own capacity, and eventually, my own perception of reality.

Now imagine checking into another hotel room.

Same weird layout. Same dresser. Same inconvenient location, but you open your suitcase and someone has magically packed a really good power bar.

USB-C.

USB.

Electrical outlets.

You can plug in your laptop, your phone, your CPAP and your lamp.

All at the same time.

Or one at a time.

You don’t have to choose.

That’s what it feels like has happened.

I can plug into things I couldn’t access before. And I’m discovering what that means.

The little things are the big things

Some of the most emotional moments haven’t been dramatic at all. They’ve been ridiculously ordinary.

I can stand up from a chair.

Not slowly.

Not by bracing myself against the table.

Not by pushing with both hands and waiting for my legs to decide whether they’re going to cooperate.

I can just hop to my feet.

And every time I do it, I have this tiny moment of holy shit! I can stand up and go get something without first calculating whether it’s worth the energy. It feels like operating in zero gravity.

My legs used to have to remember how to turn themselves on, every time I needed to stand up.

Then I’d start walking with a pronounced limp for the first 30 or 40 steps until everything began to cooperate.

Since my treatment I’ve been standing up and just walking.

It’s such a profoundly ordinary thing that it’s difficult to explain how extraordinary it feels.

I can move around without constantly negotiating with my body. These are such mundane things that I almost feel silly writing them down.

But when you’ve spent years not being able to do them reliably, they’re not mundane anymore.

They’re freedom.

My body is doing things I had forgotten it could do

For several years, stairs have been a negotiation.

I would take them one step at a time, gripping the railing pulling up at the same time I took a step, because that was what my body had learned it needed to do.

Now I can walk up stairs normally. One foot in front of the other.

The weird part is that sometimes I still catch myself doing them one at a time.

My brain has learned that this is how we do stairs now.

So I have to consciously remind myself:

You can just walk normally.

My muscle memory hasn’t caught up with my body yet.

Last week I went for a short hike with friends and my knees were sore after and my muscles were tired. But it was because I did fun things with them, not because my body was choosing violence. I flew to Colorado to see friends with Poe, I drove to Seattle without feeling drowsy. I walked 15k steps that day… before the treatment I maxed out at 1500 because my legs simply wouldn’t function after that. It was like a bank account that ran out daily. But crap the arthritis in my knees is much worse than I realised. It’s ok, I’ll figure it out, at least that pain makes sense.

My roommate noticed last week that my reaction to her gregarious Gigi has changed, because before when she’d run into me or step on me with her pokey toes it felt like shocks running through my body, and yes pokey toes still hurt, but I’m almost laughing at her now instead of crying out in pain.

For years I’ve tried to lose weight, and don’t, even on 1200 calories a day, even on ozempic … but apparently resetting a nervous system that lives in overdrive shuts off the inappropriate starvation response because I’ve lost 10lbs since my discharge without trying (and there was a very decadent girls trip weekend in there).

And here’s the thing that has perhaps surprised me most:

I’ve been physically active.

I trained a puppy for a couple of hours.

I moved about a bunch of heavy boxes of books between buildings — roughly 50 yards, one trip at a time.

About 8 trips.

And I didn’t have a pain flare afterward, I didn’t run out of steam after the first box.

My body just… did it.

And then there was Stormy and the bees

Several weeks ago, my young puppy-in-training Storm was suddenly swarmed by bees and wasps, he did a very puppy thing and went to investigate the sound of bees being attacked by wasps and then discovered they were all more worried about him: Hundreds of them! In his eyes and ears. Spoiler he’s fine!! (Thank goodness!!)

It was one of those moments where everything happens at once — people panicking, trying to get the bees and stingers off him, rushing him to the hospital.

And my adrenaline absolutely spiked.

But something else happened that I noticed immediately.

I remembered to breathe.

I stayed present.

I dealt with what was happening.

And once Storm was safely in the hands of the veterinary staff, I realized something extraordinary:

I wasn’t actually distressed anymore.

My friend was so kindly trying to comfort me, but I realised I didn’t actually need comforting. I was okay.

Storm was being cared for, my nervous system kicked in to help and then down shifted once the threat passed.

I could breathe. And I could actually feel myself coming back down from the adrenaline rather than being stuck in high gear for days like I usually would.

That might sound like a small thing.

For me, it isn’t.

After years of feeling like my nervous system could hijack my entire body, experiencing a huge spike of stress and then being able to regulate myself afterward felt like another little glimpse of that metaphorical power bar.

Numbers Don’t Lie

My CPAP app sent me a notification a few weeks ago: your obstructive episodes are down 95%. I’m sorry what now?? So I opened the app, my average since I started using it last year was ten airway collapses per hour, now it’s 1 every two hours.

The cost hasn’t been nothing

I also don’t want to pretend this has been some magical, effortless transformation.

The treatment was tough, not painful so much but deeply uncomfortable - my blood pressure spiked a lot and needed careful management, my gut ground to a halt in spite of meds to try to keep it moving, I had a couple episodes of angioedema that needed to be managed, the infusion puts you in a dissociative state that I don’t find pleasant (you can go back and read my post on octopus soup!) it leaves you feeling drunk physically and sober mentally and that combo is frustrating… and coming out of the infusion has brought new challenges. 

There have been waves of fatigue and nausea. 

At one point the nausea was a 10/10 and I couldn’t stop throwing up. I’ve had days where I’ve had very little appetite and needed medication. I’ve had disrupted sleep, including one particularly miserable night after travelling. I wound up back in the ER this week after a couple days unable to keep anything down, even the heavy duty nausea meds. It turned out to be a migraine… just without pain - WILD - light sensitivity, nausea and vomiting… but no pain.

My knees are a total buzz kill, I feel like I could do 20k steps no problem, but the arthritis in my knees is SCREAMING. But at least there’s a reason for it, and in a strange way it makes me say: “game on!!” I’ve found an osteopath on the island that I hope will help me strengthen the muscles around them.

So to say the least, I’m still figuring out what my body is doing.

I would do it again in a second.

Every unpleasant side effect.

Every wave of nausea.

Because whatever is happening inside me right now feels worth the discomfort of getting there.

I don’t know exactly what every symptom means physiologically, and I’m not going to pretend I do. But I can feel that something significant has shifted.

My brain feels different.

My access to things feels different.

My capacity feels different.

And I’m willing to be patient with the messy middle while my body adjusts to that.

The irony of this disease

Pain gets the attention because pain is so obvious.

But the fatigue was my permanent state of existence.

The medical institution understands pain. But they don’t understand fatigue. Everyone is tired at least once a day so I think medical professionals… well most everyone actually doesn’t get what severe chronic fatigue does to you. I was being tested for brain tumours and early onset Alzheimer’s… all because of debilitating fatigue.

I genuinely cannot remember the last time I felt rested.

Even first thing in the morning.

I would wake up and already be tired.

Not “I didn’t sleep well last night” tired.

More like my baseline operating system had been set to exhausted.

I adapted to it, you have to. You learn:

• how to function while tired
•  how to make choices
• what can wait
•  how to look like you’re okay when you’re absolutely not.

And because the disability fluctuated so wildly, there was another, much more insidious problem:

internalized ableism.

When you have a disability that changes from day to day — sometimes dramatically from hour to hour — you start questioning yourself.

What’s real?

What’s imagined?

Am I actually sick?

Am I exaggerating?

Why can I do this today but not yesterday?

Why can I walk into this doctor’s office but sometimes barely stand up at home?

Maybe I’m just not trying hard enough.

Maybe I’m weak.

Maybe I’m lazy.

Maybe it’s psychological.

Maybe I’m making it worse by thinking about it.

When enough medical professionals tell you that your tests are “normal,” eventually you start wondering whether you are the abnormality.

I remember crying when I found out I didn’t have MS

This might sound strange. I remember bursting into tears after learning that I didn’t have MS.

Who cries when they find out they don’t have MS?

I did.

Because I had spent years in pain and finally, for a brief moment, there was a possible explanation.

And if there was an explanation, maybe there was treatment.

Maybe there was hope.

Instead, the neurologist asked me why I was crying.

I told him:

“I just don’t understand why some days I’m fine and some days I can’t physically stand without help.”

He looked at me with what I experienced as a combination of pity and utter disregard.

And then he told me I should probably do some physiotherapy and strength training.

As though the muscles that were functioning perfectly well — muscles that had just carried me into his office — were somehow responsible for the days when I couldn’t walk.

I left without an answer.

And experiences like that accumulate.

They don’t just hurt physically.

They teach you to distrust yourself.

The extraordinary thing is that this treatment has given me something I haven’t had in years:

Evidence from my own body that something really was wrong.

I’m not saying ketamine is a miracle cure (though it definitely feels that way). 

I’m not saying I’m cured.

I’m only weeks out from treatment, and there is a lot we don’t know about what happens next.

But something changed.

My pain went from being a constant companion to being absent.

My energy came back.

My mental clarity feels different.

I’m finding myself able to engage with things that previously felt inaccessible.

And perhaps most importantly, I’m beginning to experience my body as something other than an unreliable adversary.

It’s something else.

Do I still have random aches and pains?

Absolutely.

I’m 51. I’ve got a couple of ribs that are tight. My wonderful chiropractor and some yoga will sort that out.

That’s normal human stuff.

What is not normal for me — what had become so normal that I almost forgot it wasn’t — was the intense, unexplained pain.

And right now?

It’s just… gone.

I am incredibly grateful

There are a few people and institutions I need to thank.

First, the woman affectionately known simply as “Ong” to the patients and medical professionals who know her well: Dr. Mae Ong.

She is an unstoppable force.

But I think the most powerful thing about her is that she always saw me.

She saw my pain.

She saw my lived experience.

But she also saw something else: my absolute determination to find wellness, whatever it took.

She understood that I am a nerd.

A giant, research-paper-reading, please explain to me exactly what is happening inside my body kind of nerd.

And she never dismissed that.

She would sometimes print out research papers about emerging treatments and new studies so I could understand the science behind what was happening to me. She showed me pictures of brains of people that have CSS. Evidence that what I experienced was real.

She didn’t just treat my symptoms.

She treated me like a person who deserved to understand her own body.

That matters more than I can possibly express.

I am also deeply grateful to my GP, Dr. Bo, who at only my second appointment with him suggested that perhaps a physiatrist like Dr. Ong could help me find a better path forward.

That suggestion came after years of appointments with neurologists and rheumatologists who had essentially told me there was no hope, no cure, and — just to add insult to injury — that I should lose some weight.

Dr. Bo gave me another possibility.

And then there is St. Paul’s Hospital Foundation, and the Leon Judah Blackmore Foundation, whose $1 million grant supported the newly named Leon Judah Blackmore Centralized Pain Treatment Unit, where I received this treatment.

Without investment in places like this, treatments like mine simply aren’t accessible.

So thank you.

To everyone who has loved me through the years when I wasn’t sure what version of myself was going to show up that day:

Thank you.

To the people who believed me when I wasn’t sure I believed myself:

Thank you.

And to the people who have watched me disappear a little bit at a time because I was spending all of my available energy just trying to function:

I’m not promising anything yet.

It’s too early.

But I think I’m beginning to find my way back.

And maybe, for the first time in a very long time, I don’t have to choose which part of my life gets power today.

Maybe there’s finally enough for all of it.