From Fixing Medical Machines to Learning to Fix My Day: My Life Before and After Chronic Illness
There is a particular kind of irony in spending your career working with medical diagnostic equipment and then finding yourself on the wrong side of a diagnosis you didn't see coming.
For years, my world was built around precision, problem-solving, and systems that could be understood, repaired, and optimised. I worked as an R&D medical diagnostic engineer — designing, installing, and repairing the complex automation instruments used in medical laboratories to run the tests that help doctors make decisions about patients' lives. I travelled to sites, troubleshot under pressure, worked with my hands and my mind simultaneously, and took real pride in understanding how things worked at a technical level.
I was good at my job. And then, quite suddenly, my body stopped cooperating.
When It Started: The Night Brachial Neuritis Arrived
Brachial neuritis — also known as Parsonage-Turner syndrome — is a rare neurological condition that causes sudden, severe nerve pain in the shoulder and arm. It often strikes without warning, with no clear cause, and in many cases affects people who are otherwise fit and active.
That is exactly how it arrived for me. Not gradually. Not with warning signs I could have caught if I'd been paying closer attention. Just sudden, intense nerve pain that announced itself and didn't leave.
For someone whose job involved physical dexterity, precision work, and the ability to travel and perform under pressure, the impact was immediate and significant. Brachial neuritis doesn't just hurt — it disrupts function. The arm, the shoulder, the nerve pathways that you rely on without ever thinking about them. It was the first time in my working life that my body became the obstacle rather than the instrument.
The diagnosis itself took time — as it often does with rare conditions. And during that time, I did what engineers do: I researched, I asked questions, I tried to understand the mechanism. What I found was a condition that medicine can explain but cannot always predict or resolve on a clear timeline. Recovery is possible, but it is slow, non-linear, and deeply frustrating for anyone wired to fix things efficiently.
The Second Layer: Fibromyalgia
Brachial neuritis was the beginning, but it wasn't the whole story.
In the months and years that followed, a second condition emerged: fibromyalgia. Where brachial neuritis had been acute and localised, fibromyalgia was something else entirely — widespread, diffuse, and affecting the whole system rather than a specific site.
Fibromyalgia is a condition of the central nervous system in which the brain and spinal cord process pain signals abnormally, amplifying sensations that a healthy nervous system would filter or dampen. It brings with it chronic widespread pain, fatigue, sleep disruption, and a heightened sensitivity to everything from touch and temperature to noise and light.
It is also — and this matters — a condition that is still not always taken seriously by the medical profession. The absence of visible damage on scans or blood tests has historically been used to cast doubt on patients' experiences, disproportionately affecting women. Getting a fibromyalgia diagnosis can require patience, persistence, and an ability to advocate clearly for yourself over an extended period.
By this point, I was already navigating significant limitations to what I could do and how I could work. Fibromyalgia layered onto brachial neuritis meant that the question was no longer when I would get back to the career I'd known, but how I was going to build a life that worked within a very different set of parameters.
The Third Diagnosis: ME/CFS
More recently came the ME/CFS diagnosis — myalgic encephalomyelitis, also known as chronic fatigue syndrome — and with it a new framework for understanding what had been happening to my energy for longer than I had perhaps acknowledged.
ME/CFS is a complex, multi-system neurological condition. Its defining feature is post-exertional malaise (PEM): the worsening of symptoms following physical or cognitive exertion that would be unremarkable for a healthy person. The crash can be delayed by 24 to 48 hours, which makes it uniquely difficult to manage without a structured system, because cause and effect are separated in a way that defies instinct.
For someone who had spent years in a demanding technical role — troubleshooting on site, working long hours, absorbing stress as part of the job — the concept of an energy envelope that could be exhausted by a phone call or a short walk was not something I arrived at easily. The instinct to push through, to keep going, to treat rest as something you earned rather than something you needed, was deeply ingrained.
ME/CFS, perhaps more than either of the other two conditions, required me to fundamentally rethink my relationship with effort, productivity, and what it means to manage a day well.
What the Engineering Mindset Gave Me — and What It Couldn't
There are ways in which a technical background is genuinely useful when navigating chronic illness. The capacity to research thoroughly, to understand biological mechanisms rather than just symptom descriptions, to approach management as a system to be refined rather than a problem to be solved once and put aside — these have all served me well.
I could read the studies on mitochondrial dysfunction in ME/CFS and understand what was being described. I could look at the research on the autonomic nervous system and dysautonomia and connect it to my own experience. I could approach pacing not as a vague suggestion but as something with a measurable, evidence-based rationale — heart rate thresholds, anaerobic metabolism, cytokine responses — and build a management approach accordingly.
What the engineering mindset couldn't do was make this easy. It couldn't prevent the grief of losing a career I had worked hard for. It couldn't speed up a nervous system that had its own timeline. And it couldn't substitute for the lived, daily reality of managing three overlapping chronic conditions in a body that no longer behaves predictably.
What it did do — eventually — was give me the tools to build something useful out of the experience
Why I Built the Pacing Planner
When I began to get serious about managing my conditions — particularly after the ME/CFS diagnosis — I looked for tools that reflected how these illnesses actually work. Not generic wellness journals. Not habit trackers designed for healthy people trying to optimise their performance. Something that understood the delayed nature of PEM, the need to track cognitive and sensory load alongside physical activity, the importance of connecting what you did on Tuesday to how you feel on Thursday.
It didn't exist. So I built it.
The chronic pain pacing planner came directly out of my own need — and out of the same problem-solving instinct that had driven my engineering career. If the existing tools don't do the job, you design something better.
It is not a cure. Nothing about managing ME/CFS, fibromyalgia, or brachial neuritis is about curing anything. But it is a system — and systems, I know from experience, can make the difference between chaos and something that at least resembles control.
Living With It Now
Five years on from that first sudden onset, life looks different from what I had planned. There are things I can no longer do, or can only do in fragments, at a cost that has to be weighed carefully in advance. There are bad days, and crashes, and the particular frustration of a good day followed by the consequences of having used it too well.
But there is also a great deal of knowledge — hard-won, practical, evidence-based — about how to live within these limits without being entirely defined by them. About how to pace without giving up. About how to build a day, and a week, around an energy envelope that is smaller than I would like but workable when approached with the right tools and the right mindset.
That is what this space is for. Not to present chronic illness as something to be overcome with positivity, but to share what actually helps — practically, scientifically, and honestly — for people who are navigating the same terrain.
If you found your way here because something in this story sounds familiar, you are in the right place.
Brachial neuritis. Fibromyalgia. ME/CFS. Three conditions, one body, and a methodical approach to making it work. Follow along for evidence-based chronic illness management, pacing tools, and the kind of content nobody gave me when I needed it most.
The foundation
Most planners were built for people who just need to get organised. This one was built for people whose body doesn't follow a schedule.
If you're living with Chronic Fatigue Syndrome (CFS/ME), Fibromyalgia, POTS, or another energy-limiting condition, you already know that pushing through doesn't work. The Aevum Pacing Planner is built on a different principle entirely — Load Management. Not doing more. Doing the right amount, at the right time, in a way your body can actually sustain.
This 60-day planner is where that work begins. It helps you stop guessing and start understanding — mapping your personal baseline, identifying hidden patterns in your symptoms, and building a system that works around your real capacity, not an imaginary one.
What's inside:
The 50% Rule & 48-Hour Echo — Calculate your maintenance reserve and track the delayed crashes (Post-Exertional Malaise) that don't show up until the day after
Baseline Mapping — Define your Green (Steady), Yellow (Caution), and Red (Flare) states so you always know where you are and what that means for your day
The Analytics Lab — Correlate activity with nerve pain and identify environmental triggers like weather and stress before they become setbacks
Hard Reset Protocol — Pre-planned instructions for when your system fails, so you're not making decisions in the middle of a crash
Archive & Resources — Includes a Low Energy Menu of no-cook meals and low-effort activities for your hardest days
