The Unseen Tide - Life with an Invisible Illness

There is a strange dissonance that comes with living with Myalgic Encephalomyelitis (ME). On the surface, if you saw me on a good day, you’d see a guy who looks entirely fine. You’d see someone who has spent three decades navigating the corporate world, someone who builds software, someone walking his dog.

But not all disabilities come with a visual signpost.

When you have an invisible illness, the world only sees you when you have the "spoons" to be seen. They don't see the quiet hours inside the hull when the storm hits.

#Beyond "Tiredness"

The biggest hurdle in talking about ME is the name "Chronic Fatigue Syndrome." It implies that I’m just facing a bad case of the Mondays, or that I need a few solid nights of sleep.

My own journey into this uncharted territory began back in 2015, when the first severe symptoms hit. It took a long, exhausting year of navigating medical uncertainty, running tests, and ruling out other possibilities before doctors finally understood the problem and gave me a formal diagnosis in 2016.

That year of trying to get answers taught me that the reality of this condition is deeply physical, and at times, entirely disabling.

While the profound lack of energy is the baseline, my primary day-to-day battle is with intense physical pain and violent muscle spasms. There are days when my nervous system feels like it’s short-circuiting. The muscles lock up, the pain becomes a physical wall, and the simple act of sitting at a desk or holding a phone feels like lifting weights. It is an invisible tax paid at an unpredictable rate.

#Finding the Anchors

When your physical world shrinks due to illness, you have to become incredibly intentional about how you protect your peace and manage your stress. Over the years, I’ve had to discover what keeps my nervous system from overloading. I call them my anchors:

• Transcendental Meditation: I’ve practiced TM daily since July 2016 (and it’s the entire reason I am building Transcendence). It is the one place where I can completely drop anchor, quiet the static in my nervous system, and let my body rest at a deep, cellular level.
• Tech-Assisted Pacing: Most wearable technology is designed to push you further, faster, and harder. For someone with ME, that's a recipe for a medical crash. Instead, I use Visible, an app built specifically for illness tracking rather than fitness. By measuring my Heart Rate Variability (HRV) each morning, it helps me quantify my daily "energy budget" and take the guesswork out of pacing.
• Lego: There is something beautifully therapeutic about the tactile, predictable nature of Lego. There are no deadlines, no compilation errors, and no moving goalposts. Just following a blueprint, brick by brick.
• Coding: When my physical energy is low but my mind is clear, writing code is my escape. It allows me to build things, solve problems, and feel productive on my own terms, entirely at my own pace.
• Nature: Just sitting outside or looking at the trees. Nature doesn't care about productivity metrics or corporate deadlines. It operates on its own slow rhythm, which is exactly the reminder I need.

#The Co-Captain: A Shared Voyage

While internal anchors are vital, no one survives a long, turbulent voyage alone. You need a steadfast crew. The absolute rock of my life is my wife, and we have just celebrated our 25th wedding anniversary.

Navigating a chronic condition requires immense patience, empathy, and a deep willingness to understand an illness that doesn't always make sense from the outside. Her constant help, support, and baseline understanding of my limitations are the true reasons I can run this indie shop today. She knows when to let me build, and she knows exactly when the tide is turning and I need to stop. A quarter-century together is a milestone on its own, but doing it while managing this storm makes me incredibly grateful for her partnership.

#Nova: The Unofficial Pacing Officer

Of all my anchors, the most demanding—and the most rewarding—is my English working cocker spaniel, Nova.

If you know anything about working cockers, you know they don't understand the concept of "low spoons." They have an internal engine that runs on pure enthusiasm.

On days when the pain is high and the temptation is to pull the covers over my head, Nova forces me into the light. She doesn’t care about my cellular energy production; she wants her routine. In a strange way, her relentless energy is exactly what keeps me moving. She forces me to step away from the screen, put on my boots, and get out into nature, even if it's just for a slow, short loop around the block.

She connects me to the world when the illness tries to isolate me.

#Moving at a Human Pace

Living with ME means accepting that I am no longer in control of the timeline. I can't sprint. I can't pull "all-nighters" to launch a product.

But Code and Sea isn't about sprinting. It’s about charting a sustainable course to the coast. Sharing this side of the journey isn't about asking for sympathy; it's about explaining the layout of the ship. If the updates are a little slow, or the code takes a bit longer to ship, it’s just because the tide is out.

Thanks for being part of the crew, and for respecting the slower horizon.

#A note on Visible

Get Visible

I want to be upfront: the link above to Visible is a referral link. If you sign up through it, you'll receive £15 off, and I'll receive a small benefit in return.

I mention this only because transparency matters to me. I've used Visible as part of my daily pacing routine since well before any referral arrangement existed — it genuinely earns its place among my anchors. But you deserve to know the full picture before you click.

If you'd prefer to go direct: Visible