Congratulations... it's MS!

In May 2025, my daughter was born. Having a newborn was exactly how people had described it. The days are long, but the weeks fly by! My husband and I were getting into a rhythm – enjoying family walks, café visits and library sing-a-longs. Everything felt like it was coming together. 

One of my favourite things about being a mum is getting to experience many things again for the first time – like listening to my favourite songs, going for walks and reading stories. I was deeply wrapped up in the baby bubble and I didn’t want it to end. I loved being able to show her new places and just talk to her endlessly. Thankfully narrating to your child is recommended! When she gave her first smile, it was like she had joined the conversation. We both loved our bubble.

When you’re post-partum it is hard to tell if any strange symptoms you’re experiencing are from being a new parent, hormone changes, recovery or something unrelated to pregnancy."

I woke up one morning, about five months post-partum, with pins and needles in my left hand. I was almost excited I had slept well enough to make my arm “dead." I did find it strange when the tingles didn’t go away after an hour. They didn’t go away after 24 hours, in fact the tingling sensation spread further up my left arm. Weird. But as most parents know, you just get on with business. I booked a GP appointment to rule out carpal tunnel or a vitamin deficiency.

On the fourth day of being symptomatic I had trouble holding my daughter. My left arm was weak and I was starting to feel that fuzzy pins and needles sensation down my left side. I wanted to just magically get better; instead, I was taken by ambulance to hospital with a suspected stroke. I went from feeling faint to having aphasia (not being able to talk). Once admitted to hospital, a stroke was ruled out but the weakness and sensory disturbance was a red flag. However, I was still breastfeeding, so I decided to go home and do an MRI as an outpatient.

Trying to look after my daughter during this period was bizarre. Mentally, I was functional. Physically, I couldn’t change her nappies, clothes or nurse her properly. Again, I just magically wanted to recover and get back to being a happy mum! Unfortunately, I ended up back in emergency as the MRI indicated lesions on my brain and spine. This was the first time I heard doctors say you might have multiple sclerosis (MS). My immediate thought was “I’m not strong enough to handle this.” 

I stayed in hospital to receive treatment for the weakness in my body. I also had a lumbar puncture and another MRI to gather more evidence for my diagnosis. I missed my daughter, I had to stop breastfeeding abruptly and try not to freak out that my body was deteriorating. On the sixth day, I decided to go home. I needed to be with my family. I was becoming distressed being away from my daughter. I was told to use my referral to find a neurologist and go from there. That meant waiting.

A lot of people say the waiting for a diagnosis is the worst part. I agree. You are in limbo. No treatment, no counselling, no support groups. Just you and your body trying to behave normally when you’re not okay. I just got straight back into mum mode. Thankfully the steroids helped me regain my strength and I was able to do some things for my daughter and self again. Unfortunately, the sensory disturbance had not improved. Touching her laundry, nappies and bath water was enough to send me into a panic.

My first appointment with my specialist didn’t confirm my diagnosis. I had to wait another month for an MRI to get clearer imaging. My patience was thin at this point. I was still experiencing sensory disturbance, extreme 
fatigue, heat sensitivity and let’s be honest…depression. This was the most isolating time for me. Going to do activities I used to do with my daughter was triggering.

I couldn’t hold her at our baby sensory class, I couldn’t last long in the water to do swimming lessons and I didn’t make it to the library anymore for sing-a-longs. I missed visiting people. I missed my old body, which was already feeling foreign because I was post-partum. I didn’t know who to speak with or how to get any support at that time because, without a concrete diagnosis, I didn’t belong anywhere.

I had an invisible illness, and it made me invisible in every way. When the second appointment with my neurologist finally came around, I was told a 
new lesion had been found in my brain. This news confirmed I have MS.

Being officially told I have a disability was hard to digest but it was better than living in limbo." 

So, where am I now? Well, I am not an expert in dealing with MS. I still have treatment to undergo and find ways to deal with the changes in my body. I’m not sure what my new normal will be. I do want to acknowledge the strength and determination people with disabilities demonstrate every day.

Particularly when the disability is invisible. It’s draining, isolating and frustrating. I know I am privileged being able to share my story and to have had so much support from my family, friends and husband. Without them, I would have struggled further and my daughter would have missed out on the care she deserved.

My story isn’t the most extreme or debilitating version of an invisible disability. I do hope that it inspires other people to share their journey and make connections – I plan to do just that.

If you're a new mum with MS and looking to connect with others on the same journey, express your interest below.