It was a hot day and I was desperate to leave the CBD and get back to my children at home. My heart sank when I saw the queue for the tram. I knew I’d have to either elbow my way on or beg for a seat—because I have an invisible disability. While I’m seemingly fine on the outside, my symptoms flare up during a multiple sclerosis (MS) attack or in the heat.
“Excuse me, may I please have a seat?” I ask a young businessman. “I have MS and I don’t think I’ll make it the whole way standing.”
My face burned with embarrassment and then gratitude as my shaky legs buckle at the relief of having a rest. You see, this is not my last challenge for the day. The bigger one waits ahead: being able to keep up with my little guys.
I gave birth to Remington (Remy) nearly three years ago. I worked right through pregnancy, had a natural vaginal birth with few complications and breastfed from the start. It was such a relief that my body—which often failed when I needed it—came through for me when I became a mother.
But about six days post-birth, I started feeling the beginnings of an attack and my health certainly took a beating in the first eight weeks of sleep deprivation. Like most first-time parents, I was shocked by the interrupted sleep, the hormonal effects of the postpartum period and breastfeeding, and in denial about just how much this mothering business changed my very essence.
I was supposed to have three months off work, but my boss kindly suggested I take another two months of annual leave. I breathed a sigh of relief—five full months to get my head (and heart) around this little baby I had been blessed with sounded good to me.
Now, here I am three years later with a toddler and a new baby. Little Raymond (Ray) joined us before Christmas and Remy has finally stopped trying to send him back (!) and has started to show a tenderness for Ray that is normally only reserved for his beloved Pa (my dad).
I’ve learnt a lot in three years. Importantly, how to juggle my illness with work and raising two vivacious boys.
1. It takes two to tango
In the early days, it was easy to (wrongly) think that everything rested on my shoulders when it came to parenting Remy (and now Ray). Just as capable, and worthy of input, Brendan my husband taught me that I have a life partner who can help me through—particularly when my illness gets the better of me.
There have been days where my walking hasn’t been so great or I can feel an attack coming on and there’s no option but to rest in bed. On these days Brendan, or our parents, have taken Remy on playground adventures and trips to the beach. Important bonding time for them and resting time for me.
Parenting has taught me that you can never be someone’s all, but you can be someone’s constant. And that, for a child, far outweighs the benefits of “fun mum”.
2. There’s always an alternative
From travel to bike riding, I hate it if I miss out on anything—particularly when it comes to family time. Yes, I find travel exhausting, but since having Remy we have been to Europe, New Zealand, Cook Islands and to many interstate destinations. For me, the trick to being able to keep up is to take lots of break days in between sightseeing days.
We also learned to shorten our days, which means dinner while travelling is often cheese and bread in our room (easier with kids anyway!). We also make sure playground stops are aplenty as I can sit down and rest before the next adventure.
Bike riding? Well I’m currently saving for an electric bike for my birthday. I’ve ridden short distances with Remy in a bike seat, but my legs struggle with any gradient and I pay for it for days afterward, so I’m looking forward to having an electric bike to help me up the hills.
3. I can’t do it all
But I can pick and choose what is important to me and then prioritise like hell. As it’s important to me to spend time with the kids but to also earn an income, I’ve had to learn how to say no to anything that falls outside of these two priorities.
By getting comfortable with saying no to events, opportunities or extracurricular activities, I’ve been able to do what is important to me without having my health suffer. Sure, I’ve had to say no to another child’s birthday party, a wedding invitation or a social activity everyone else is doing. But that’s meant I’ve been able to spend more time resting, hanging out with the family and being ready, fit and able for work come Monday morning.
So as I stand up to get off the tram on this hot Melbourne summer night, I reflect on what my illness has brought to me and my family’s life. Sure, it’s not ideal to have days where I can’t walk very well or days where I’m so bone tired, I’m lucky to get through dinner still awake.
But on the flip side, our life is so much more focused now. Brendan and I prioritise what’s important—our Remy and Ray, and sometimes each other—so that we can enjoy this life we lead. It’s a quality life, not in spite of my illness, but actually because of it.
