Darkness crept in from the outer corner of my eye until I couldn’t see anything but a washed-out blur of foggy haze. I wasn’t too concerned. I figured out a way of applying my black eyeliner, despite a lack of vision – a skill that I am still most appreciative of – and everything else seemed quite inconsequential. Catastrophic thoughts like; “what if I never see out of this eye again?!”, or “what if it happens to my other eye?” never came, despite a vague awareness that this was related to my recent diagnosis, and “must be it now – must be the rate that my body loses function, until there’s nothing left.”
Oh well, better make the most of it while I can – where did I put that eyeliner?
Being diagnosed at sixteen had its pros; primarily of the *brain not yet fully developed and therefore lacking the capacity to think long-term or connect emotionally with any future what-ifs, while feeling fundamentally invincible* variety.
Through virtually ignored tingles, numbness, pain, fatigue, and those early years’ companions like L’hermittes sign or the aforementioned optic neuritis, I ploughed on with life – giving my symptoms very little in the way of a second thought. I rocked up to each hospital appointment without notes, preparation, or forethought. I spoke off-the-cuff; listing issues with a vague surprise that I was so aware of them – there they all were, ready to fall off the tip of my tongue. I laughed and joked my way through explanations and observations, chatting to my nurse as I would when meeting a friend for coffee. I don’t think I cried, even on results day – “new lesions” started to feel like I was being told the sky is still blue, and I couldn’t connect it to any meaningful impact on my “outside life”. Those few minutes every six months were the only times I gave any real thought to how multiple sclerosis impacted me on a day-to-day basis, despite a plethora of ongoing symptoms and highly active disease activity.
I did as I was told (with one notable exception, when a box of oral steroids lay untouched on my bedside table through what I had deemed a rather mild relapse). I took DMTs, changed DMTs, chose DMTs, turned up at the time on appointment letters, went for blood tests – all with a rather… blasé, moment-by-moment, attitude towards the whole thing. “The whole thing”. “It’s just MS”.
In my naivety I attributed my clinical stability and continued wellness to this “positive” attitude, and now I think I may have been partially right – not because I was “overcoming MS with positive vibes” – no, but because my “blasé” attitude kept my mental wellbeing sheltered from the full force of the MS storm, and thus my symptoms seemed to be less intrusive than they might have seemed otherwise.
I know this now, because about two years ago a switch was flipped inside my brain.
As I hit my mid-twenties something unexpected happened. It felt like overnight I started thinking about MS in a way I had never troubled myself with before. My partner and I moved cities, meaning I was leaving behind the clinic I had been a patient at for almost a decade; the team I had known – become an adult knowing – the hospital I attended, the comfortable stability of a place I had come to know so well. It wasn’t until my first appointment in our new city that the full impact of the move became apparent – here I was, facing a changing body with a nurse who didn’t know me, in a busy, unfamiliar, hospital. I cried during that appointment, perhaps for the first time. (Of course it doesn’t help that I had come from the multi-million pound, purpose built clinic courtesy of a certain author, and rather foolishly assumed another city wouldn’t be all that different. I miss the coffee machine most of all).
I put my changing psychological state down to the unfamiliarity; the discomfort of new surroundings, new ways of doing, new people, new management styles, longer waiting times; but I also wonder if there was more to it than that (or even if the move was a complete red herring altogether). If with age comes over-thinking, catastrophising, dwelling on, fear.
For the first time since my diagnosis I began to impose limitations on myself out of a concern for potential consequences, I lay in bed focusing on what my body was doing in that particular moment or dwelling on how it had felt that day, rather than on the book I was trying to read. I had entire hypothetical conversations with my consultant in my head, planning exactly how I would make sure he understood the full severity of the changes taking place. I became absorbed in MS, saturating my entire existence with illness, symptoms, progression, what-ifs. Yes, my multiple sclerosis was getting worse, and having more impact than ever before on my day-to-day ability – but was I, could I, be magnifying things further?! I felt like I had lost myself, my own authentic way of living with MS, to this symptom-tracking, step-counting, confidence-losing, pain-fearing, comparison-making, ego-driven, results-craving, anxious nightmare.
It almost felt like I was going through diagnosis all over again, but this time without the protective layer of youthful ignorance and immortality.
I missed my laid-back approach of days of yore; when MS was there, but it wasn’t all that was there.
Thankfully over the past couple of months, the turbulence of the last two years has subsided. My mind is sailing once again on calmer waters, and I’ve settled back to a place that feels more recognisable, more balanced. Perhaps more blasé. And while I still have the same symptoms, they’re having nowhere near the same impact on my life as a whole.
I’m fumbling my way along to the sweet spot that lies somewhere between my attitude of the first ten years with MS, and the explosion of the last two (probably, for me, erring on the side of the former, but at least now I own an “appointment notes” notebook).
I’m fumbling my way back to all of me.