Sarah Dagg

My MS journey

In September 2021, I was diagnosed with Multiple Sclerosis, a chronic, incurable, unpredictable and progressively disabling neurological condition.

Every May since then I’ve taken part in the annual May 50K fundraiser, which supports MS Australia as they advance research into better treatments and ultimately a cure for MS. Over the last two years, supported by family and friends, we’ve raised $12,000 for this fantastic organisation.

My MS was diagnosed after weeks of sharp pains on one side of my face caused by a lesion on my trigeminal nerve (at the base of my brain). Now, other lesions in my brain and spine manifest in constant pins-and-needles-like pain in my hands and feet, as well as fatigue, sensitivity to heat, and a range of other less-palatable but well-managed symptoms.  

I am very lucky. It was caught early, I’m supported by an excellent medical team, and I receive regular treatment to slow down disease progression.

My first year after being diagnosed is best described as ‘relentlessly optimistic’. I totally ignored the impact of MS in my life, blissfully distracted by wedding planning, puppy parenting, buying a house and stepping into a demanding executive role.

The second year was a different story. It all caught up with me, I pretty much crumbled and I was really, really angry to be one of the 33,000 Australians living with MS.

Coming into my third year, I feel like I’m starting to hit my stride again. Most days are business as usual, even if that BAU is a bit less intense than it used to be.

But there are definitely days where it’s not.

As an extreme example, a few weeks ago I was doing box jumps at the gym on Thursday, then spent Friday admitted to Emergency because of intermittent vision blackouts, balance problems and a migraine that wouldn’t respond to medication.

In December last year I fell off a train (literally faceplanted onto the platform at Central) on my way to work because my legs weren’t working like they’re meant to. Nursing a bruised ego, a few weeks later I fell again, this time in a busy carpark while cars drove around me.

Post-diagnosis, going out (socially) or travelling for work has shifted from an impulse activity to a process with a mini risk assessment considering not only how to make sure I have the energy for whatever I’m doing, but if I can safely get myself there and home, if there’s somewhere to sit down if I’m tired and if there’s a way to stay cool if it’s outside.

Every experience of MS is different, and all things considered, mine is pretty mild. The challenges I describe are well-managed with a bit of careful planning and open communication, but that’s not the case for everyone.

The annual May 50K fundraising is important to me because MS Australia weren't just great with resources for Tom and I when I was newly diagnosed, they provide (free!) ongoing support to us as we navigate this journey.

They provide access to specialist MS nurses which is invaluable when you’re not sure which symptoms to suck up, or when it’s time to see the GP or neurologist (and how urgently), or head to hospital. I was also able to participate in an MS Australia-funded research study last year, looking at walking ability and lower limb strength.

If you’re in a position to support my efforts and donate to MS Australia, I’d be very grateful –

Sarah