Knowing another new mom with Multiple Sclerosis, I feel less alone. Meet my new friend Helene.

The journey of me being diagnosed with Multiple Sclerosis began in October 2015 and was fully confirmed in January 2016. And then I did not begin medication until September 2016. Across the months, there were a lot of ups and downs, a lot of questions, and a lot of unknowns. For me, most was focused on my life as a young mom with MS…the need to stop breastfeeding, how do I practice the necessary self-care while having my hands full, what is it like to go off medication to get pregnant again, how long can I stay off medication to breastfeed baby #2 if this happens, etc? I really had no one to talk to who understood exactly what I was going through in that moment. I was very much alone on this journey.

In 2018, I emailed an illustrator whose work spoke to me and our mission at Hello My Tribe. Through being open and honest, I shared my MS diagnosis with her. MAGIC. She too had MS and a young daughter. I am so thankful to have met Helene. Even though she lives across the pond and I have never met her in person, I feel less alone. I know I can email her with my questions and worries, and on the other end will be someone who understands. Helene is here today to share her MS journey with us.

When were you diagnosed with Multiple Sclerosis? I was diagnosed in 2010, so eight years ago.

What were your symptoms? The symptoms of my first episode started as an annoying tingly feeling in my right hand which then went completely numb, at first I thought I must have been lying on it or had been using my computer too much, unfortunately the sensation didn’t come back for over six weeks, in fact it got worse and spread to my arms, chest and feet. I then got one of the most ironically named symptoms of MS called the ‘MS hug’, it literally feels like being squeezed to death by a 30 stone grizzly bear, you feel like you can’t breathe and lasted for around four weeks… not the kind of hug I enjoy that’s for sure!

Since then, amongst other ailments, I’ve temporarily lost the sight in one eye (not so bad, got to wear a pirate patch and pretended to be Uma Thurman), had balance problems that made me walk around in circles (surprisingly amusing) and had a persistent buzzing feeling in my left bum cheek for two weeks.

What was life like prior to diagnosis and after? Life before MS was great, my boyfriend and I had moved to live by the sea in Cornwall, I’d not long started a new job and looking back, we had very little to worry about! 

When you decided to start a family, what special considerations went into that decision and experience? When we finally made our mind up that it was ‘now or never’ making the decision to start a family was pretty easy, we couldn’t imagine not having a child and we’d tackle any issues my MS presented when/if they happened. That’s the thing with MS you just can’t predict what will happen, so there’s no point in letting it rule your life. It has however contributed to our decision to have just one child, I think the sleep deprivation would kill us.

What surprised you most about being a young mom with an autoimmune disease? Aww I like that you called me a ‘young mum’ (pay you later x)  
I think the biggest surprise was that although 80% of people are diagnosed with MS between the ages of 20 and 40 (with 29 being the average age) and it effects more women than men, I hadn’t until last year met any mums my age with the same condition.  The other thing that surprised me was how great I felt during my pregnancy and whilst breastfeeding my daughter, I had no MS symptoms at all and apart from the normal post birth hideousness I felt fantastic!

Biggest frustration with your diagnosis? For me the biggest frustration comes with a relapse that stops me being able to drive and be independent, I hate relying on my boyfriend to get about (and his driving scares the shit out of me) Since having my daughter I think it’s even more frustrating as she doesn’t understand why I can’t do certain things, like play with batman lego for 5 hours straight… zzzzz

Its also really frustrating that sometimes when you’re having a relapse, unless people know you have MS it’s impossible to tell, I could be feeling like I’ve been hit by a ton of bricks but look completely ‘normal.’

What you’re most thankful for in regard to your diagnosis? I’m very thankful for my partner and family, they’ve all been so supportive, my boyfriend even raised £3000 by cycling 100 miles for the MS Society. This was amazing but also made me feel a little guilty that I’ve not done anything similar, after all it’s me with MS, I’m half tempted to run a marathon or something… but to be honest, I’m just too lazy.

How do you practice daily self-care? I love yoga and meditation, before I had my daughter I used to practice all the time, nowadays I’m lucky to have a wee by myself! I do try and stick to a healthy diet though. I’ve been a vegetarian for the past 12 years and follow the Swank diet (low sat fat, no bad stuff)  as much as possible.

I’m also a great believer in positive thinking, the mind is such a powerful thing, if you can make yourself ill by worrying then surely it works the other way around too!

If you could should anything from the rooftop, what would you say? Well, I’m a bit of a potty mouth so it’d probably be a profanity, sorry mum.

Favorite tip for a new mom? Hmm favourite tip…find some good mum friends with babies the same age; they’ll stop you from losing your shit, you’ll probably show them bits of you that you’d never dream of showing any other friends, you’ll cry together, talk about poo and generally want to marry them.

Also, the trick with the envelope neck baby vests…this was a game changer for us.

Where can people find your work? Follow me on Instagram!

Post Author
Alex Winkelman
Alex founded Hello My Tribe not because she was an expert on motherhood, but because she was a mom who desperately needed support and community. During those tough first months of motherhood, Alex spent day after day reading and learning about motherhood. She learned: 1. She wasn’t alone in her feelings about motherhood. 2. Everything we could have ever dreamt of existed for the baby, but there was a lack of resources for the woman/mother 3. There are many maternal health issues in our country that need attention and need to be addressed. Hello My Tribe was built upon these needs. Previous to launching Hello My Tribe in 2016, Alex was a professional and volunteer fundraiser, raising millions of dollars for non-profit organizations. Alex lives in Austin, TX with her son and two rescue dogs.


1 Comment
  1. posted by
    Aug 7, 2018

    This was great, thank you for sharing Helene’s story and being open about your own diagnosis.

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