The spare room haunts me
First comes love, then comes marriage, then comes the baby in the golden carriage.
A song we sang in the schoolyard takes on a new meaning as a married woman ever-creeping towards 35. What happens if there’s no golden carriage or it takes a detour down MS avenue? An already life-changing decision is suddenly complicated by two tiny letters.
The spare room haunts me. I don’t live in a haunted house - Casper the friendly ghost isn’t a lodger here. I have, thankfully, never been visited by a ghost of Christmas past/present/future. Nevertheless, the spare room haunts me. In 2023, we were fortunate enough to buy a four-bed house consisting of a master bedroom, a guest bedroom, a home office and one spare bedroom languishing without a purpose - like a leftover screw at the end of an IKEA flat-pack assembly.
After almost two years here, we’ve furnished every room. Thankfully, we’re no longer sleeping on a mattress on the floor or calling an upside down box “la table” - aka the most exclusive restaurant in town. Yet the spare room persists as a space for nothing - a room for no one, unassigned a role in the story of our lives. It has become a dumping ground for empty boxes, some spare bed sheets and my husband’s never-ending shoe collection. It’s a living-space in limbo just off the landing.
I know, deep down, why this room has remained untouched since we got the keys to our dream home. Why would I give this room a function when I don’t know what or who will arrive in the future to fill its four walls. Is it a spare room for Airbnb or a room for a baby? Is it a single guest room or a room full of googoos and gagas. Should it be used as a home yoga studio or a room for swaddling and swaying a little person to sleep? Much like my womb, the spare room is an entity in my life that has yet to realise its potential or purpose.
A spare organ with potential has a lot in common with a spare room. The latter is an appendage to a fully finished home while the former is an appendix to a fully functioning body. You could survive without both of them but, nevertheless, they both persist trying to ascertain their purpose in life.
As a woman, you spend your whole life trying not to get pregnant. Suddenly you wake up and you’re no longer 17. At some point the acceptable reaction to a friend’s pregnancy becomes a congratulatory one rather than an attempt to conceal it from their parents. The time between 17 and 35 has passed by a little too promptly for my liking. One minute it’s Maniac 2000 on the dance floor and the next minute those same girls from your party era have become parents.
I’ve gone from being one of the gals to potentially becoming a 'geriatric' mother after the age of 35. My instagram feed is flooded with pictures of cute newborns, baby showers awash with balloon popping pastel colours, mam guilt and gentle parenting advice. I look on from afar wondering if this is something that I’d be able to manage with MS, a job and bills to pay. Some days looking after myself, my MS and the dog is more than enough for me to handle.
As I approach 35, my womb feels like an oven without anything cooking but a very loud timer.
Having MS makes the timer sound like a fog horn. My mind is like a game of ping-pong going between: “It’s too much for my MS to handle”, and “I’d regret it if the opportunity passed me by”.
Meanwhile, I shed a tear when another friend sends me a picture of the miracle growing inside her tummy. Anytime I see a curly haired child, I wonder is that what a tiny version of me and my husband would look like. I buy another gift for yet another neighbour’s bundle of joy. Who knew that socks needed to be this small and cute? What exactly does a baby put in the tiny pockets of their jeans? On some level, it feels like a form of mental torture.
As a woman with MS, I don’t have the luxury of a surprise pregnancy. I’ve spent the past two years playing treatment Tetris. I’ve been tapering off medicines unsafe for family planning and switching to treatments that are really hard to tolerate but safe for a future foetus. Meanwhile, Tysabri time is also ticking. Once I’ve been taking the medication for two years the risk of a serious and sometimes fatal side effect (PML) increases. It’s two months until I’m 35, 10 months until two years of Tysabri and one big decision to make.
All the while, the spare room lies hauntingly empty, awaiting a purpose or a person to fill it.
A Note of Care
We understand that pregnancy and MS can be a deeply personal and sometimes emotional topic. If this blog has brought up any difficult feelings, please know that support is available. You are not alone—whether you need information, reassurance, or someone to talk to.
For further information, you may find these MS Ireland webinars helpful:
MS and Pregnancy with Maria Gaughan – Watch here
Another Perspective on Pregnancy and MS – Watch here
If you have concerns about treatment, including Tysabri, it’s important to note that experiences vary. While some people may need to adjust or stop certain medications, others may not. Your healthcare team can provide personalised guidance based on your specific situation.
For support, you can reach out to MS Ireland at info@ms-society.ie or speak with your medical team. Take care of yourself, and remember that your experiences and feelings are valid.
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