Living with MS doesn’t come with a manual — just a slow unfolding of symptoms, suspicions, and life-altering decisions you never expected to face.

This is my story, as well as I can remember it. Given the memory retention challenges of multiple sclerosis.

Raising Suspicions

I didn’t set out to get a diagnosis. Like many people with MS, I simply knew something wasn’t right. I knew that living with MS would mean change, I didn’t realise the scale.

Two moments stand out in my memory — both unsettling enough to push me into seeking medical advice.

The first happened one late afternoon at the office. I was preparing to head home and bent down to pick up my briefcase. I grasped the handle, stood up, and… let go. Not deliberately — I just couldn’t hold onto it. My hand relaxed involuntarily and the briefcase thudded back to the floor. I tried again with the same result. It wasn’t pain or weakness exactly — just an inexplicable inability to maintain my grip.

The second incident came the very next day in living with MS, at lunchtime. I’d driven into Dyce to pick up a sandwich. I parked across the road from the shop, got out of the car, and began to cross. Halfway across the road, my legs suddenly turned to jelly. I crumpled to the ground in an ungainly heap. No warning, no pain, just… collapse. Embarrassed, I leapt back to my feet and glanced around, half-expecting someone to be pointing or laughing. But no one seemed to notice, so I brushed it off and carried on to the shop as though nothing had happened.

Those two episodes shook me — not just physically but mentally. Something was clearly wrong. This wasn’t fatigue or clumsiness. My body was sending signals I didn’t yet understand. Living with MS would prove to be an opportunity for education.

Accepting the Diagnosis

Living with MS is a journey that led me to a neurologist at Aberdeen Royal Infirmary. After listening to my symptoms and performing an initial examination, he ordered a series of tests. I had a blood test, a lumbar puncture, and an MRI scan — the full work-up to rule out other conditions and search for evidence of neurological damage.

When the results came back, he told me I had “all the signs” of multiple sclerosis. But he didn’t actually say “You have MS.” At the time, that puzzled me.

Later, through my own reading, I discovered why. What I had was CIS — Clinically Isolated Syndrome — a term that means a single neurological episode suggestive of MS, but not yet confirmed. It’s a kind of diagnostic purgatory. The word multiple in multiple sclerosis is important: to earn the diagnosis, you need to show multiple episodes, separated in time and space — either on MRI scans or in real-life symptoms. Until that happens, they can’t label it as MS.

In some ways, living with MS felt like a non-diagnosis — but the uncertainty made it even harder to process. I was experiencing the symptoms. I was living with the fear. But I didn’t yet have the clarity or the treatment plan that might come with a confirmed diagnosis.

Looking back, I now appreciate the care my neurologist took not to rush to conclusions. But in the moment, I felt adrift — caught between knowing something was wrong and not being able to name it.

Living with MS

If there’s one word that captures the early years of living with MS, it’s uncertainty.

Even after the initial diagnosis — or rather, the not-quite-diagnosis of CIS — I found myself in limbo living with MS. I knew something was happening in my body. I had symptoms, I’d had tests, and yet there was still no definitive outcome. I was told to wait. Wait and see if it happened again. Wait to see if a second relapse would “confirm” what I already felt in my bones.

It’s hard to describe what it’s like to live in that kind of medical suspense. Every twitch, every stumble, every odd sensation became a possible harbinger of something bigger. I became hyper-aware of my body — a reluctant detective searching for signs. Was that tingling in my hand just poor circulation, or the beginning of another episode? Was the fatigue from a late night, or something deeper? The ambiguity was exhausting.

One of the earliest symptoms I now recognise as paraesthesia — a numbness and tingling in my face — seemed more like an annoyance than a medical concern. I remember sitting in the pub one evening when a stranger asked me, “Are you feeling worried?” I thought it was an odd question, until they pointed out that I was rubbing my chin very thoughtfully. I wasn’t deep in thought — I was unconsciously responding to the tingling sensation in my face. My body was whispering something, and I hadn’t yet learned to listen.

More than the symptoms themselves, it was the not knowing that got to me. The open-ended nature of it. I didn’t know what to expect next, or when — or even if — the disease would progress at all. No one could explain the difficulties of living with MS. And in truth, no one ever really can. MS doesn’t follow a script. It isn’t linear or predictable. It can flare up, go quiet, shift focus, change tempo — all without warning.

In those early days, I found it hard to make long-term plans. Would I still be working in five years? Would I be walking? Driving? Travelling? I had no idea. And that kind of uncertainty changes how you view everything — from your career to your family to your sense of self.

Eventually, I learned to live alongside the unknown. I stopped asking what MS would do next and started asking what I could do, here and now. That shift — from fear to focus — didn’t happen overnight, but it was essential. Because while I couldn’t control the disease, I could control how I responded to it.

The Power of Routine

After months — and then years — of navigating uncertainty of living with MS, I discovered something unexpected: routine was not the enemy of freedom, but its foundation.

Before MS, I thrived on change. I liked novelty. I believed, rather smugly, that I handled stress well. Routine, in my view, was for the unimaginative — a crutch for people who didn’t have better things to do. But MS has a way of reshaping your worldview, often by force.

One of the first lessons I learned in living with MS was that stress is the enemy, and routine is a powerful ally. The unpredictability of MS — with its flare-ups, fatigue, and cognitive dips — made every day feel like a gamble. I needed a way to reduce decision fatigue and keep my limited energy focused on what really mattered.

That’s when I began to lean into structure while living with MS.

These days, my mornings follow a highly consistent pattern. I wake at 8:15 to the sound of BBC Radio Scotland on a radio alarm clock — a familiar voice in the morning fog. I take my time getting up. First things first: I urinate, brush my teeth, and empty my “pee-bottle” if I’ve used it overnight. (A throwback to the old chamber pot — or as we used to say, the “gazunder.” It goes under the bed, you see.)

Then I totter downstairs for a proper Scotsman’s breakfast — a plate of porridge and a good cup of tea. After that, I make my way out to my office and begin the work that now defines much of my life: writing, reflecting, researching, and sharing what I’ve learned from living with MS.

This routine may sound mundane, but to me, it’s a framework that holds my day together. It allows me to conserve energy, minimise decision overload, and create space for creativity — even within the confines of chronic illness. It’s not a trap. It’s a launchpad.

I’ve also found that breaking the day into short, manageable bursts of activity helps enormously. MS-related fatigue is unpredictable, but not insurmountable. I work in short sprints, then rest. I pace myself. I no longer try to push through just because I “should.” That kind of thinking belongs to a life I no longer lead.

MS changed how I think about time. I no longer fill it for the sake of being busy. I use it with purpose — and my routines help me do just that.

MS and Cognitive Challenges

When most people think of multiple sclerosis, they picture physical symptoms — walking difficulties, tremors, maybe slurred speech. What they don’t often realise is that living with MS can affect the mind as much as the body.

I’ve always prided myself on my ability to think clearly. I come from an engineering background — logic, structure, and clarity of thought were part of the job description. But over time, I began to notice something changing. Words wouldn’t come as easily. Thoughts got foggy. I’d lose track of what I was saying mid-sentence, or forget why I’d walked into a room.

It wasn’t dramatic, not at first. But it was unsettling. I now know this as cognitive dysfunction, often referred to (rather too gently) as “brain fog.” It’s a common symptom of MS, though not always recognised. For me, it was one of the most personally frustrating — not because it stopped me from functioning entirely, but because it interfered with how I functioned. It undermined confidence. It chipped away at the sense of competence I’d built over decades.

In living with MS, I started making changes. I broke tasks into smaller steps. I wrote more things down. I created lists, routines, and triggers to help me stay on track. And, perhaps ironically, I began using AI to overcome the very mental blocks MS had introduced.

“Using AI focuses the mind… it translates random and disparate thoughts into understandable and grammatically correct format.”

That sentence sums up the relationship I’ve built with technology. Tools like AI, far from replacing my thinking, have helped me recover it. They give shape to thoughts that might otherwise remain half-formed or evaporate entirely. They allow me to continue expressing myself, even when MS throws static into the signal.

But perhaps the most surprising thing that helped banish brain fog was learning Spanish. Not fluently — I wouldn’t claim that. My linguistic abilities have improved very little in practical terms. But the act of learning — struggling with vocabulary, mastering grammatical structures, exercising memory — has had a profound effect. It put my MS-addled brain to work in a new and unfamiliar way. It’s been frustrating, slow, and sometimes discouraging — but over time, my mind began to feel clearer. Sharper. More alive.

And once again, AI lends a helping hand here too — with tools that assist in living with MS, aid pronunciation, vocabulary retention, and even conversation practice. I still speak “just enough to feel Spanish, but not enough to be Spanish” — but that’s fine by me. The real reward is not in the fluency; it’s in the clarity of mind that came from the challenge.

MS may affect the brain, but it doesn’t own it. With a little help — and a lot of persistence — I’ve found ways to reclaim my mental agility, one word at a time.

The Influence of Family Experience

When I was diagnosed with MS in 1994, I thought I was the first in my family to face this strange, shifting illness. But later, as my mother’s own health declined, she began describing symptoms that sounded eerily familiar. She had been diagnosed in her early thirties — just as I had — and experienced many of the same issues: mobility difficulties, visual disturbances, and a general sense of something being off. Yet to this day, she maintains it was never MS. She insists it was “just neuritis.”

I’ve tried to explain that neuritis — specifically optic neuritis — is often one of the first signs of MS. But my mother is of a generation that doesn’t embrace medical labels. Perhaps the thought of living with MS was too much to bear. Or perhaps, in some way, denial became her way of coping. Either way, it has coloured the way she speaks about her health — and, by extension, mine.

Her experience gave me both perspective and pause. On one hand, she’s lived well into her nineties — a milestone that defies the idea that MS is necessarily life-shortening. On the other hand, seeing her struggle with mobility, confusion, and isolation has made me all too aware of the potential trajectory of the condition.

It also raised an uncomfortable question: is MS hereditary?

The general consensus is no — at least, not in the way we understand traditional genetic inheritance. But there does appear to be a familial tendency or increased susceptibility in some cases. Whether I inherited a predisposition or simply encountered the same environmental triggers, I can’t say. But the parallel remains hard to ignore.

There’s another layer to this too — the emotional inheritance. My mother lived through the Second World War. She was evacuated to the countryside as a child and remembers the farm animals, the fresh air, the sense of freedom. But she’s now a 90-year-old woman living alone in Fairmilehead, reliant on a walking frame, fearful of technology, and resistant to change. She’s estranged herself at various points from her children, yet she remains deeply loved.

Supporting her living with MS in her later years has been both a challenge and a privilege. My sister and I — now pensioners ourselves — take turns doing her weekly shopping. We’ve encouraged her to use technology to reclaim some independence, but modern life terrifies her. We even considered taking her to Venice, but the logistics of incontinence, airports, and unfamiliar settings were simply too overwhelming. In the end, we didn’t press the issue.

Watching her navigate ageing — with or without MS — has reminded me that mindset matters. I’ve tried to suggest brain exercises, even introduced her to Duolingo. Her response? “I do a crossword every day — isn’t that enough?” Maybe it is. But I can’t help thinking that a brain, like a muscle, needs new challenges to stay strong.

Her story is part of mine. Her courage, her limitations, and her resistance have all shaped how I approach my own diagnosis. She has been living with MS for nearly 60 years and I’ve learned what to embrace, what to question, and what not to take for granted.

MS may run in families — or it may not. But resilience, adaptation, and the will to carry on? Those definitely do.

Adapting My Career

Before MS began interfering with my abilities, I’d built a solid career in engineering. I started young — at seventeen — as a telephone engineer with Post Office Telecoms, which would later become BT. From there, I moved into field service, maintaining time-clocks and telephone systems around Fife. I even spent some time as a sound engineer in the music industry before making the leap into computers, servicing some of the earliest IBM PCs.

I loved the variety of it. The travel, the troubleshooting, the satisfaction of fixing things with my hands and my mind. But gradually, MS began to chip away at my independence — in particular, my ability to drive.

Living with MS didn’t  force to give up my driving licence. I made the decision to relinquish it — a conscious and difficult choice. I knew that my vision was failing, and my concentration was no longer what it used to be. I had begun to lose my sense of spatial awareness and direction-finding — both critical to safe driving. It was no longer fair to myself or others to be behind the wheel.

As a field service engineer, being able to get to a client’s site was non-negotiable. No licence meant no practical way to continue. Still, the sense of loss was profound. It wasn’t just about mobility — it was about identity. I’d always been the man who got things done, fixed what was broken, turned up when no one else could.

That chapter of my life had to close.

Opening Doors

But living with MS can open doors too. Over time, I found a way to repurpose my skills and interests into something sustainable — and satisfying. I turned to blogging as a way to share my experience of living with MS. At first, it was simply a mental exercise — a way to keep my mind sharp (or as sharp as possible). But it soon became more than that. Writing proved to be deeply cathartic. It helped me organise my thoughts, reflect on my experiences, and express things that were often hard to say out loud.

Blogging gave me back a sense of agency. It wasn’t just about storytelling — it was about processing, understanding, and occasionally even connecting with others who recognised something of themselves in living with MS.

Alongside blogging, I began exploring stock market investing, particularly dividend-focused strategies that could help support my retirement. It was another way to stay sharp — analysing companies, reading market trends, keeping mentally engaged.

Perhaps the greatest gift of this new career — if you can call it that — is flexibility. I now work from home, at my own pace, in short bursts that respect my energy limitations. I take breaks when I need them. I nap if necessary. I no longer have to explain or justify the oddities of my schedule to anyone. This applies just as much to my evening ritual as to my mornings — wind-down routines help me sleep better, manage symptoms, and reflect on the day.

MS took away certain career paths — but it also gave me the chance to build a new one, on my own terms.

Social Life and Emotional Wellbeing

Multiple sclerosis doesn’t just affect the body — it affects relationships. Over time, I’ve learned that living with MS often means living more inwardly, whether you choose to or not.

Fatigue makes spontaneous outings rare. Unpredictable symptoms make long social plans difficult. Even noise and crowds, once invigorating, can become overwhelming. As a result, social interactions tend to narrow. You see fewer people. And some — understandably — drift away.

I have many acquaintances, but few close friends. Some of that is just life. Some of it is MS. One long-time friend died of cardiac arrest, another retired and faded out of contact. I even considered my doctor a friend — a rare kind of GP who listened without hurrying and seemed genuinely interested in my wellbeing. But when she retired, that connection disappeared too. These days, my wife is my closest companion — my confidante, my sounding board, my co-conspirator in navigating the peculiar rhythms of life with MS.

And yet, I don’t consider myself lonely. Emotional wellbeing doesn’t always require a bustling social calendar. It requires connection — and purpose.

For me, that purpose often comes through writing. I’ve mentioned blogging as a mental exercise, but it’s just as important to my emotional health. It allows me to reflect, to express, and to share — even if the sharing is quiet and the feedback minimal. Living with MS put thoughts into words, gives them shape and meaning. It clears emotional clutter. It helps me find perspective.

I’ve also found ways to stay connected in non-traditional ways. Not every interaction needs to happen face to face. A thoughtful email exchange, a kind comment from a reader, or a casual chat with a neighbour can all be enough to restore that essential human spark. The form matters less than the feeling.

Of course, when living with MS, there are still times when I miss the ease of earlier social life — the pub nights, the unplanned meetups, the chance encounters. But I’ve come to accept a quieter social rhythm, one that fits the pace of my energy and my priorities.

MS has changed how I engage with the world. But it hasn’t cut me off from it. I’ve simply learned to engage on my own terms — gently, deliberately, and with a great deal of appreciation for the relationships that remain.

Travel

Travel has always been important to me. It represents freedom, curiosity, and the sheer pleasure of being somewhere else — somewhere warmer, brighter, or just different. Living with MS hasn’t taken that away from me, but it has changed the way I travel.

Gone are the days of spontaneous weekend getaways or shoulder-bag city breaks. Now, every trip involves planning — lots of it. I’ve learned to think in terms of energy conservation, accessibility, airport logistics, and climate. I book disabled assistance at airports in advance, which usually allows me to bypass queues and access specialist equipment for boarding. It’s not just helpful — it’s essential.

In truth, travelling with MS today is far easier than it used to be. Most major airports are well equipped, and the staff — especially with airlines like Jet2 — are superb. We’ve never had a problem flying with them. The process is smooth, the team attentive, and they make the experience feel as close to normal as possible.

My wife and I have enjoyed many memorable trips over the years. We used to visit Santa Ponsa in Mallorca regularly — a favourite haunt where we made lasting friendships. More recently, we’ve discovered Nerja, a charming town in southern Spain that strikes just the right balance between liveliness and relaxation. We’re even considering going back.

I also used to sail — dinghies as a child, and later, an E-boat out of Port Edgar Marina. Travel in those days meant adventure, activity, and a touch of adrenaline. These days, it’s about comfort, connection, and the joy of being present somewhere beautiful.

Yes, living with MS adds complexity to travel — but it doesn’t have to mean the end of it. With thoughtful planning, a bit of patience, and the right support, it’s still possible to explore the world. And in a way, each journey feels all the more precious for the effort it takes.

What I’ve Learned from Living with MS

Living with MS has been, without question, the greatest challenge of my life — but also one of its most persistent teachers.

I’ve learned that strength isn’t always loud or visible. Sometimes, it’s just getting out of bed and doing what needs to be done — even when your legs feel like lead and your brain feels like soup.

I’ve learned that routine is a gift, not a prison. It creates structure in a life where chaos often pervades.

I’ve learned to stop romanticising stress. I used to think I thrived on it — now I know it’s a thief that steals energy I can’t afford to lose.

I’ve learned that my mind is still sharp — it just works differently now. Brain fog isn’t the end of thought; it’s just a reminder to slow down, breathe, and maybe learn a bit of Spanish while I’m at it.

I’ve learned that identity can evolve. Losing the ability to drive or work in the field didn’t mean losing who I was — it meant adapting that identity into something more sustainable, and in some ways, more meaningful.

I’ve learned that connection matters, even if it looks different now. Fewer friends, perhaps — but deeper ties. Less noise, more purpose.

And finally, I’ve learned that acceptance isn’t giving up. It’s choosing to live fully within the parameters life has given you, while still reaching for new horizons — whether that’s a well-written blog post, a quiet family lunch, or a return trip to Nerja.

Living with MS has shaped me, challenged me, and sometimes tried to break me. But it has also taught me to adapt, endure, and even thrive — not in spite of it, but alongside it. Living with MS  is a journey where the destination is unknown – a kind of magical mystery tour.