Into the dark

Fast forward to March 2008. I am lying flat out on the kitchen floor, dizzy with fear, coming round from having fainted. We have just returned from a weeklong family holiday in Belgium. At the start of the week I felt absolutely fine, but as the week progressed I felt increasingly exhausted, I felt pins and needles and constant nerve pains in my legs, and every step I took was an ordeal.

The first thing I did when I’d recovered sufficiently was to phone my aunt, a doctor in general practice. Now I have always adored my aunt Shirley, but if ever there was a time for her to drop her trademark ‘tell it like it is’ approach, this was it.

I described my symptoms over the phone, and she started a response that began, ‘Well, I don’t think it’s Multiple Sclerosis because if it was, then you’d also have …’. And then she listed a series of symptoms and sensations that I knew I had been ignoring for much of my adult life. And that’s when I fainted.

Over the four years that followed, I was put through an endless array of medical tests and interventions, all of which were inconclusive. MS is an imprecise condition to diagnose formally, and one that the NHS is loath to get wrong. MRI scans, eye co-ordination and balance tests became routine. The results showed that my myelin sheath (the coating that protects the spinal column) was eroding, but not at a rate that required invasive or immediate intervention.

What was frustrating for me, and is for most other MS patients, is that until the myelin deterioration reaches a certain level, no formal diagnosis of MS can be made. I knew very well that I had MS. The consultant neurologist discussed with me how best to cope with the condition, but felt able only to make ambiguous statements such as, ‘You are presenting with symptoms that are consistent with a diagnosis of MS, but could be an unrelated neurological condition or disorder’.

Despite the lack of conclusions from the various tests, my health gradually deteriorated. I had worked for myself for more than a decade, and maintaining any sort of schedule or routine was becoming increasingly challenging. I started to feel a constant fatigue which meant that I couldn’t get through a day without having a rest, or sleep, for a couple of hours. My legs felt like lead, and buzzed with what felt like an electric current, coupled with near permanent pins and needles. And then things really took a turn for the worse. 

I remember waiting on the platform at Appledore, my local unstaffed railway station, having arranged to meet a friend for a drink further down the line in Hastings. I remember standing on the platform, conscious of the fact that the train was late. I tried to read the scrolling information sign for updated information, but for some reason I couldn’t make sense of the words on the screen. I couldn’t see it properly, and I couldn’t understand why. Even when I got up close, I could barely read the revised arrival time. It felt a bit like I was drunk. Instinctively I covered my right eye, thinking that I might see better with just the left. Instead of helping, everything went dark. I realised that I couldn’t read the display because only one eye was functioning, and the resulting imbalance was disorienting and very, very frightening. This partial blindness lasted nearly three months, but like many MS symptoms my sight was gradually restored.

The partial blindness prompted a new round of tests and scans, and this time there was no ambivalence or hesitation. The neurologist told me that I had Relapsing and Remitting Multiple Sclerosis, and that it was time to talk about ‘disease-modifying treatments’. It might seem strange, but the diagnosis came as a relief. Finally, I knew for certain that I had been right about my condition all the time. There would be no more limbo, no more indecision, no more ‘come back in six months’.

For someone who only has to look at a needle and faint, a treatment involving daily self-administered injections was never going to be easy. Yet of all the treatments offered, it was the daily Copaxone injection that promised the fewest side effects and which I decided to try. Currently there is no cure for MS, and so the principle behind many of the treatments available is to stop or slow down what are referred to as ‘MS episodes’, giving patients more time while waiting for a permanent solution to be developed. That’s the idea behind Copaxone and, for several years, it served me well. Following the problem with my eyesight back in 2012, I had no further new episodes for five years. Sure, my legs still hurt, and fatigue can play havoc with my working week. But compared with many MS sufferers I really don’t feel the need to complain.

After my diagnosis, people who knew me well thought I was taking everything in my stride. I knew that I didn’t want to be defined by my illness and I was determined never to be the person who says, ‘I can’t do that because I’ve got MS’. But beneath the façade I was in a permanent state of anxiety. Although I was putting on a proverbial ‘brave face’, inside I had stopped dreaming of the future, of what I would and could do – and particularly of my lighthouse-to-lighthouse cycle trip. 

With the tiredness, the loss of my sight and the heaviness in my legs, I had resigned myself to the fact that my dream was over.

I had always thought of myself as a supremely positive person, but I found it harder and harder to remain upbeat. I remember one neurologist telling me not to worry, reassuring me that, ‘Not all patients with MS end up in a wheelchair within six months.’ I had always thought of myself as a ‘glass half full’ sort of person, but now all I could see in my mind was me in a wheelchair. I started dissecting even the most well-meaning comments from friends and family: ‘As many as 60% of MS sufferers live normal, healthy lives for ten years or more’.

And what did I hear? ‘40% clearly don’t.’ I was 45 when my MS was formally diagnosed, and if I hadn’t managed to break free of this way of thinking, I am confident that even if I was one of the lucky ones, it would have been ‘game over’ by now.

Friends and family rallied round and offered their support, particularly when they sensed that I no longer talked about my lighthouse trip. They made several suggestions. Perhaps I could make the trip shorter, by including only the coastal lighthouses and not the offshore ones? Or how about driving rather than cycling? Or visiting a handful of lighthouses each summer, until I had completed them all? All sensible suggestions, but ones that held no appeal.

It wasn’t just visiting every lighthouse that was important to me. It was the idea of a journey that had no formal end point or time limit. I craved the independence of doing it all under my own steam. So I decided I’d rather leave the dream behind than compromise.

I felt partly empty, and partly angry. I understood completely why Basil Fawlty put his fist up to the sky so often in a threatening manner, as if it was God’s fault that Sybil had found out about his win on the horses, or that the moose had fallen on his head. I had been dealt a lousy hand, and I wanted to blame someone for it. It seemed as though MS was just one more thing that had gone wrong in my life.

This was a moment in my life when I had given up on more than the cycle tour of lighthouses. I had given up on lighthouses altogether. It felt like a very bleak time, but salvation was to come.