On Thursday 9th September 2010 at 10.30 am my life took a rather unexpected turn. “You have MS”. The words were spoken by my Neurologist, a somewhat pompous doctor-man with a dry, old school manner that would take me several months to grow accustomed to. Around 100,000 people living in the UK today have been on the receiving end of this perceived ‘diagnosis of doom’; a club to which I didn’t particularly want to join but one that I have gradually learnt to embrace and at times even be grateful for.
At 28, like many who are newly diagnosed, I was far too young to be losing my mobility, my continence, my eyesight, my balance … I found myself wandering around for days in a daze. How exactly did I get to this point? What had led me to this diagnosis?
This is MY story of how it all began.
One cold wintry morning in January 2010 I awoke with severe pins and needles spreading down my left arm and into my hand, “I must have slept funny,” I thought, trying to shake it off. The tingling refused to budge as I proceeded to shower and get ready for work. We’d had snow only the week before and it was still bitterly cold so I set off all snug and bundled up for the brisk 10 minute walk from my apartment to the theatre where I had been working for the past 16 months. As the day wore on the tingling appeared to be getting worse but I ignored it, not mentioning it to anyone and shrugging it off as an insignificant annoyance. A week or so passed but the pins and needles remained. I remember mentioning it to my boyfriend and we settled on the conclusion that it must be a trapped nerve or something, after all – I had been working out particularly hard at the gym and at home with my own weights; perhaps I’d done something to my shoulder….
On 6th February I was to see my little brother, who happened to be a real-life doctor, and so I thought it would perhaps be worth mentioning this odd sensation. By this time the tingling had turned into a kind of numbness and was starting to become more than a tad annoying. My brother didn’t seem overly concerned and agreed that it was more than likely a trapped nerve.
Over the next few weeks I grew used to the tingling and numbness in my arms (at some point it had spread across to my right side – I felt like a walking tingle). I continued smashing it at the gym. I continued to live it up at my favourite places, the theatre and the cinema (my diary for this period is littered with ticket stubs). I continued taking long walks round the Broads at weekends. And, I continued the search for a new job… I’d never really planned to stay at the theatre as long as I had – I loved the place and the people but I wasn’t using my degree or any of the skills I’d acquired at university. I felt vastly overqualified and guilty as heck that I wasn’t pushing myself enough after all the emotional and financial support I’d received from my parents during my degrees. In a word I was STRESSED; stressed beyond belief. What was I doing with my life? It’s perhaps not surprising that the stress exacerbated my symptoms. As we neared the end of February the tingling and numbness in my arms had decided to jump across to both my legs and feet. I said goodbye to my feet at some point during mid – late Feb of that year and have not heard a peep from them since.
The first week of March saw the tingles worsen and I started getting pain in my legs when I walked. The 13th of that month gave me another opportunity to talk with Dr Brother. This time he took more of an interest, appearing surprised that my symptoms were still there and asking more questions about it. I didn’t let on to anyone else in the family, for no other reason than because I still believed it to be of no significance. I spent the first half of March preparing for a job interview at an organisation I really wanted to work. I even booked a trip to Amsterdam to attend a conference that I hoped would enhance my chances of getting the job (a trip that I could neither afford nor summon the energy for). The pressure I put on myself was immense and it was during those weeks that I began stumbling and falling into walls. My legs had become so heavy and tight that walking was now becoming a real problem. I remember walking to work one day and my feet just wouldn’t lift off the ground, I struggled to make it into my office feeling as though I’d just trudged through a mile of treacle to get there (a feeling that I am still all too familiar with).
Other symptoms had developed over the previous few months, symptoms that I’d not paid much attention to but which had now become more pronounced – I was experiencing localised stabbing pains in my head that would stop me in my tracks for a second or two before subsiding. When I overheated a red or green filter would cloud my vision in a display of colourful flashes. My legs had become really restless at night and were threatening to boot my boyfriend off the bed. These were all little oddities that, when added together, formed a much bigger problem; one that I could no longer afford to ignore…
Coming soon: ‘Part Two: Time to See a Doctor’.
Photo: Me in Amsterdam, working hard at the conference… symptoms in full swing