Dear life, I'm holding on
The prologue to the story of my MS diagnosis
When it came to writing up my MS diagnosis story, I rifled through the archives of my life to set the scene. It became a pretty long read. So I’m publishing it in two parts, with the first one here, and the next one to come in a day or so. I hope you’re sitting comfortably. It’s a bit of a rollercoaster.
The Prologue
The first months of 2008 were unremarkable. I felt grateful for the even keel I found myself on. This was the calm I wished for following the ups, downs, joys, jolts, twists and turns of the previous few years.
🎢⚡️2001. Thunderbolts. Jason proposes. On the steps of Brixton Academy. After a New Order gig. He doesn’t want me to see it coming. It works. He shocks me to the core. After ten years together we are an engaged couple and there is much celebrating. Less than two weeks later I get a phone call from my brother at work to say my mum has been diagnosed with cancer. I drop everything and drive up North.
🎢 💖 2002. Highs. We get married in the Oxfordshire countryside on the only sunny day in a rainy August. Mum has come through surgery and chemotherapy. Her beautiful lilac hat conceals her short regrowth of hair. Tears are shed, the food is perfect, the bar gets drained of its contents, and I heckle my own DJ (of course Lady in Red was not on the playlist we’d curated so carefully). Signs of a good do. We fly off to Rome and Umbria for 10 days.
🎢 🏘 2003-6. Upheaval. We move cities twice, from Oxford to Hull, from Hull to Leeds, and houses four times (house sale, job moves, renting, staying with family, buying a house again).
🎢 🚧 2005-6. Roadblock. Our GP says it’s probably a good idea we start tests to find out why I’m not getting pregnant. Results show having a family may not be in our future.
🎢 🥊 2006. Blow. Out of the blue Jase is diagnosed with cancer as we go through said tests. He has surgery and chemotherapy. We stumble through with this diagnosis, hanging on to the positive prognosis and statistics for early detection.
🎢🗽2007. Celebration. I turn 40. We both crave a trip away. We fly to New York for a week and absolutely relish giant bagels, yellow taxis, the landmarks, the buildings and the energy. Some nights we stay in the hotel room to soak off the overwhelm. Of the city. Of it all. We have a special dinner on my birthday on a dear friend’s recommendation.
In 2008 we’d have the 40th birthday get together with friends and family that became too much to organise the previous year. I’d celebrate at 41 instead.
The day after Jase’s birthday seemed like a good time to start planning. As I walked across town one mid-week afternoon day-dreaming possible venues, I noticed that my vision seemed blurred. Like I had smeary, dirty glasses. But I often did. I closed one eye, and the other in turn. It seemed it was only my left lens that was the problem. I cleaned it with my shirt. Nothing changed. I rubbed again. Nope. Still blurry. Did I have something in my eye? I checked in a mirror. My eye looked normal. But things were getting worse. I seemed to be losing vision. I’d already parked my internal monologue about birthday parties. This needed attention.
My optician squeezed me in for the last appointment of the day. I scanned his face for signs of concern, vigilant after my recent exposure to illness. I registered something. But maybe he was just concentrating. I wrote it off. After swift examination, he concluded that I had inflammation of my optic nerve, and sent me off to Eye Casualty at the hospital.
My memory of who exactly said what during these two appointments is as blurry as my vision was, but the escalation to the hospital resulted in the confirmation of what was happening to my eye and gave it a name.
Optic Neuritis.
And a warning that my vision would likely deteriorate further, my colour vision would fade, and I may have some pain. I was scared, but managed to hear:
“…in time, things should start to improve, and sight returns to normal or near normal for most people”.
I chose to believe I would be one of those people. From Eye Casualty, I was referred to a Neuro-Opthalmologist, a consultant I would see in a few weeks, maybe through one eye.
Despite being directed to this specialty of medicine I had never heard of, I remained reasonably level-headed. Surely there couldn’t be more drama to deal with. I wanted to know more though, so as I waited for the appointment to come around, I consulted Dr Google. This doctor gave me a list of results including some showing the link between optic neuritis and multiple sclerosis.
A lurch in my stomach. Reasonably level headed couldn’t take this hit. I tipped over into panic.
But the neuro-opthalmologist didn’t bring multiple sclerosis up. I was confused, why wasn’t he talking about it? The appointment felt like it was more than past the midway mark. So, as I honed in on his pink (?) patterned tie, wondering if all the colour had been restored to my left eye, I told him about the information this other doctor had given me:
“Erm, I just wanted to ask, I came across some information, I mean I know it’s probably not a good idea to Google things, but there seemed to be some information about the link between optic neuritis and MS?”
He paused. Looked thoughtful. He seemed to understand why I would have made the connection. But his response was clear. I had made a full and quick recovery from optic neuritis, and had no other symptoms associated with MS. He assured me that there was no need for further investigations and that I did not have MS. I should come back if I experienced any of the common symptoms, tingling, numbness, pins and needles etc. He sent me on my way with an anodyne National Health Service (NHS) patient information leaflet. Black print on white flimsy folded A4. To get on with my life.
No more drama.
To be continued…
Thank you for reading
Jane 💛
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⭐️ To find out a bit more about me and where the name of the blog came from see the About section ⭐️
This has to be a very, even the most poignant and demanding piece of writing about your MS journey so far ; to chart the early exploration and stuttering along the foreboding path of diagnosis in such an accessible avenue for all us readers is quite a tour de force. The second part is of similar vivid and clear vein. Thank you for this. Bernard.
thank you for sharing. x