Stepping away from my day‑to‑day life for four days shouldn’t feel like preparing for a marathon, but when you’ve lived with M.E for nearly two decades, even the gentlest birthday‑year adventure comes with its own side dish of realism, turning every small plan into a carefully orchestrated operation. After 12 years of advocacy and 20 years of navigating this illness, I know my body’s limits intimately. I planned, paced, and prepared as much as humanly possible, and still, the reality is that being chronically ill, especially as a single person, comes with extra costs and compromises. My recent journey back to Plymouth, my old home town, was no exception. I paid more so a close friend could drive the 180 miles each way and stay nearby (thank you so much Ian – very grateful), and I kept my schedule deliberately sparse, knowing full well I wouldn’t be able to wander or socialise the way nostalgia wanted me to. What I got instead was a blend of a bucketload of memories, and a dose of realism about what travel looks like for me now.
The first night set the tone for the whole visit. My best friend and I headed to The Barbican, part nostalgia tour, part curiosity about what had changed. Years ago, when I lived on The Hoe, I could wander down there without a second thought, slipping easily into the nightlife that was just a short walk away. But the Sally of 2026 is living a completely different life. Now, even a simple evening out starts with choosing a car park based on which option involves the least punishing hill or the shortest walk. These were the kinds of calculations we made constantly over the four days, weighing up energy, terrain, and what our bodies could realistically manage.
My friend has her own health challenges, so every plan came with layers of consideration. Somewhere between the cobbles and the sea air, I realised just how much I’d forgotten about Plymouth’s hills, and how effortlessly I used to walk everywhere. That version of mobility is long gone, replaced by a reality where walking long distances simply isn’t possible without consequences. It was a strange mix of familiarity and loss, seeing my old home through the lens of who I am now.
I won’t lie, the morning after the first night, I couldn’t stop crying. I felt defeated by my ill-health. All of the planning and micromanaging of energy seemed pointless. My body felt wrecked. Who was I kidding? I couldn’t even do a minimalist adventure any more. I felt very sorry for myself. It made me reflect on plans I had tentatively mentioned to family and friends for my actual birthday later in the year. I hate wasting money, I also hate wasting other people’s time, money, and effort. Did I really want to risk inviting friends and family to travel from all over the UK only for me to be too unwell to celebrate? So, I Whatsapp’d my nearest and dearest and told them I’d had a reality check and that I’d changed my mind. Reactionary? Probably. But I knew I’d forget the impact of my M.E on this trip and knew it was the right decision. I have no idea how I will mark my actual birthday, but I’ll decide with measured realism and pragmatism.
In my mind, I hadn’t pushed myself on that first night. All I’d really done was shuffle slowly through the Barbican from the car park and sit in two quiet pubs for a meal and a drink. It felt low‑key, manageable. I didn’t feel “tired” in the way people with M.E understand that word. But with hindsight, of course it was more than that, I’d already spent three hours travelling in the car earlier that day, and even with rest breaks, the exertion had stacked up. It was cumulative, as it always is.
So there I was, stubbornly arguing with myself: “Why on earth have I spent all this money to be here, only to end up stuck in my hotel room resting?” I think a lot of mild or moderate PwME will recognise that tug‑of‑war, feeling awful, but still trying to squeeze some enjoyment out of time away simply because we technically can, even though we know there will be consequences for doing not much at all. If I’d been at home, I would have cancelled everything and stayed put without a second thought. But being away changes the equation. I hate wasting money, especially when I don’t have much to spare, and that pressure adds its own layer to the whole experience.
The rest of the trip followed a similar rhythm, small adventures, carefully measured. I crossed the border into Cornwall for a spa visit and an excellent pedicure (chauffeured, of course), sank into the glorious sofas at the Everyman cinema in Royal William Yard, explored and took photos on the Beryl Cook walking trail (my friend drove me to the statues), revisited where I used to live, work, and play (short distances from the car), caught up with another old friend in her home with a cuppa, and found myself in yet more quiet pubs for gentle meals out. I even visited The Box, a museum that’s sprung up since I moved away. What I hadn’t accounted for was the hill leading up to it, I underestimated it spectacularly. By the time I reached the top, my legs and chest were screaming, and I had to sit in the museum café with a bottle of water until my body stopped protesting. Reader, it took five days for that leg pain to settle….my knees too (no comment)!!!
At some point during the trip, my body flipped into adrenaline mode. I felt “ok,” not tired in the M.E sense, which is always a warning sign. After twenty years of living with this illness, I know that feeling deceptively fine while doing unfamiliar things usually means the PEM will be deeper and hang around longer. I was right, tonight marks a full week since my last night in Plymouth, and the PEM is still lingering, slowly easing, but still very much present.
By the end of the trip the clearest lesson was simple and stubborn: I felt unwell the whole time, I didn’t leave my M.E. at home like an extra pair of shoes. It came with me, like heavy luggage. That reality shaped every choice, every small bit of joy and every compromise, and it’s the key takeaway I need to make sure I don’t forget. Travel with a chronic illness isn’t about pretending you’re someone you used to be; it’s about making room for nostalgia while being honest about limits, accepting the cost of being safe, and choosing celebrations with realism and pragmatism.
Love Sally
and Foggy (OBVIOUSLY x)