Trailcraft on Thin Ice: Hiking with Lupus, RA, POTS & Intracranial Hypertension

Between The Fire, Fog and Pressure

Some days, my joints feel like they’ve been welded shut.
Other days, I stand up and the world goes sideways.
Then there are days the pressure builds behind my eyes before I’ve even left the trailhead.

Living with Lupus, RA, POTS, and Intracranial Hypertension isn’t just about pacing. It’s about risk management. Real-time decisions in wild environments, inside a body that can crash in multiple ways at once.

And no, it’s not a coincidence that these conditions show up together.

When your immune system turns against your joints (RA), your organs (Lupus), or your blood vessels and nervous system (POTS, IH), you’re not collecting random diagnoses. You’re living inside a system where regulation itself has been compromised.

This is often called polyautoimmunity: immune dysfunction spreading across systems over time. It’s common, frequently misdiagnosed, and deeply exhausting.

Add nervous system instability or cerebrospinal pressure dysregulation, and what you’re managing isn’t a single condition. It’s a moving target. Inflammation, autonomic instability, and mechanical limits overlapping in ways that change day to day.

This isn’t about pushing through.
It’s about protecting your future self while still reclaiming the trails that call you home.

Systemic Interplay: What’s Actually Being Managed

Lupus + RA (Autoimmune / Inflammatory)
Joint pain and instability
Sun-triggered flares and fatigue
Medication timing and immune sensitivity
Energy unpredictability and pain spikes

POTS (Dysautonomia)
Orthostatic intolerance
Heat intolerance and sweat dysfunction
Energy crashes after mild exertion
High fluid and sodium demand

Intracranial Hypertension (IH)
Rising cranial pressure (not a headache)
Triggered by exertion, heat, or elevation
Vision changes, nausea, balance risk
Often worsened by dehydration or poor sleep

Together, these create constant negotiation:

• Heat and sun as flare triggers
• Standing and climbing as destabilizers
• Fatigue turning into mechanical failure
• Internal pressure spikes that demand immediate response

If this sounds complicated, it is.
The world just isn’t built with bodies like this in mind.

This Is Context, Not Instruction

What follows isn’t a checklist to copy.
It’s a sketch of the variables I have to hold in mind simultaneously.

Each condition changes the cost of motion in a different way. The posts that follow this one slow the lens down and look at those costs individually, in lived moments, not abstractions.

Think of this as the map.
The posts that follow are the terrain.

Trailcraft as Risk Management

Out here, success isn’t distance or elevation.
It’s staying upright, aware, and able to come back tomorrow.

Every decision carries weight:

• Route choice
• Time of day
• Heat and exposure
• Hydration and recovery
• Whether today is a “go” day at all

Turning back early isn’t failure.
It’s skilled trailcraft.

What’s at Stake

This isn’t about “taking it easy.”

It’s about preventing:

• Permanent joint damage
• Organ or neurological stress
• Vision loss or collapse
• System-wide crashes that steal days or weeks

Choosing the trail is an act of courage.
Coming back safely is an act of self-respect.

Where This Goes Next

This post sits at the top of a longer conversation.

The pieces that follow narrow the focus and slow things down:

• Adaptive Trailcraft: Re-Entry After Flare
  What happens mid-hike when intracranial pressure spikes, and why early adjustment matters more than finishing.
• Adaptive Trailcraft: Hiking with POTS
  Standing tolerance, early signals, hydration, and why stopping early can preserve the whole day.
• Adaptive Trailcraft: Hiking with RA & Lupus
  Morning assessment, joint readiness, heat and sun limits, and knowing when not to go at all.

Not a system. A way of paying attention.

Ready to Hike Again, On Your Terms

Reclaiming trails with complex illness isn’t about chasing mileage.
It’s about staying in relationship with your body, your limits, and the land.

You don’t need to prove anything.
You just need to come home safely.

Stay responsive. Protect your capacity. The trail will still be there.

 Safety Note

This my individual, personal experience, not medical or therapy advice. If something spikes pain or panic, stop. Stabilization beats bravado. Work with a practitioner who respects your pace.

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