Erin shares her story of how her life changed after a diagnosis of enterovirus encephalitis and meningitis.

 

Immunocompromised

I was 25 and just married when I was diagnosed with multiple sclerosis in 2018. Fast forward 7 years and I’d been stable on my meds and leading a relatively normal life.

I had a beautiful daughter in 2024. She started childcare in 2025 and it was all downhill from there. Cold after cold, rhinovirus, adenovirus, gastro you name it. Being immunocompromised from my MS medication meant I got EVERYTHING.

Then, mid year, my daughter got hand, foot and mouth disease. Not meant to be caught by adults but here I was, blisters, flu symptoms etc. I recovered. Fast forward again 2 months and I’m waking up in ICU after being in a coma for 8 days. No idea where I was or how I got there. The enterovirus – underlying virus of hand, foot and mouth, had entered my spinal fluid and then my brain, causing encephalitis and meningitis.

 

Hospital admission

With no memory of my own, from what family and medical professionals have told me, I was unwell for a few days, getting progressively more ill, vomiting, severe headache, slurred speech, couldn’t walk or talk properly. First trip to the local emergency department got rendered as gastro and keep my fluids up. Next day I was in a much worse state and 2nd trip to a local emergency department ended with me in an ambulance to hospital. I was assessed in regular intervals in urgent care and was deteriorating rapidly. Every time they’d ask me to squeeze a hand or push with my feet I was weaker, until I couldn’t do it any more. That’s when they decided to give my body the best fighting chance of getting over whatever was attacking me and it worked.

 

Illness progressing

I had a seizure while in the coma which made things worse.

My mum recalls the doctors saying I was “extremely unwell” which she knew from watching medic shows on TV was code for “it’s not looking good”.

When I woke up from my coma I recall saying “where’s my husband, I want my husband”. No-one else was that important at that moment. I was incredibly distressed and confused.

I couldn’t move. Couldn’t sit up or even roll over in bed. When my husband came and visited me, he handed me phone which I immediately dropped and was convinced he’d filled my phone case with bricks.

I was given a teddy that felt like it was made of lead.

I couldn’t eat. I couldn’t drink without spilling it. Over the next 3 weeks I was in the neurology/stroke ward slowly regaining my functions. From sitting up in bed to sitting on the side of the bed to taking first steps again. Learning to toilet and shower again.

The strangest thing was nothing felt ‘wrong’. I felt like I was where I was meant to be and was doing what I needed to do to get where I needed to go. Quite bizarre looking back on it.

 

Prolonged hospital stay

My husband and daughter were both sick on and off at the time I was in hospital so I only got to see my daughter from a distance for a short time once in the month I was in hospital (and the week of inpatient rehab after). It was torture. But it made me fight that much harder to get back to functioning.

I had a couple of set backs – I wasn’t eating properly (hospital food ‘minced and moist’ diet) so they had to reinstate my Nasal- Gastric tube. Once they finally put me on solids I recovered a lot quicker.

After a month in hospital, I was off to another facility for rehab. Inpatient rehab wasn’t the best experience for me so I returned home after 6 days.

Hugging my husband and daughter again was the absolute best thing. It was so nice to back in my own home.

 

Living with the after effects

Over the first 2-3 weeks at home I had 3 falls. The first one was the worst, doing decent damage to my knee (still sore as I write this 4 months later). Second and third were more minor but caused setbacks to recovery and a lot of frustration. I ended up attending 6 weeks of day rehab which was the best thing I could’ve done. I’m certainly not 100% of what I was prior but I was getting there.

Now, 5 months on from the initial onset and a rehab journey that only ended recently, I’m slowly getting back to work (thank goodness I work a desk job because I would be struggling with an active job). I’m physically fatigued way more than I was with just the MS. My body feels like it’s fighting against me whenever I try to do anything physical. Minor, short bursts of housework result in needing a decent break or nap. My neurologist said it’s a miracle that I’m alive and he has no idea what’s in store for me from here. I have ceased my MS medication for now because it’s possible the infection is still in my brain. I’m in limbo between having a relapse with my MS or risking being infected like this again. It has definitely made a huge change on my life mentally, physically and emotionally.

My advice to anyone experiencing encephalitis is to stay positive. Surround yourself with as much positivity and happiness as you can. It is the absolute best thing for getting back as close as you can to your previous life.

The picture of me is 5 months post illness, doing what I can to enjoy life’s happiness 😊

 

Contact us if you would like to connect with others who have experience of encephalitis.

Story published April 2026