What would you ask a parent who lives with MS?
Blogger and mum of two Jo Barnett had one of her children after being told she probably had MS (but before getting her official diagnosis). She would’ve loved to have heard stories from parents with MS, but didn’t know anyone in her situation.
For MS Awareness Week, she answers some of your questions about her personal experiences as a mum.
Did you have a natural birth?
I didn’t have a C-section or an epidural for either of my children (or any drugs with my second, just gas and air).
I felt more in control with my second child (when I had MS). Perhaps because I had done some brilliant relaxation and coping classes. The classes gave me ways of breathing and focusing which gave me enough strength and confidence to see most of my labour through at home. I was only in hospital a short time before he made an appearance.
It was all much easier than my first. And I don’t think my MS made any difference. I noticed no difference to how I was treated from the first time I gave birth, both times on a labour ward.
Read more about pregnancy, birth, breastfeeding and MS
How did you manage your fatigue while pregnant? How do you cope with fatigue when raising a child?
Fatigue for me is two-fold. I have chronic muscle fatigue – the type that people often describe as ‘walking through treacle’. Then I get the extreme tiredness fatigue. I get this from the added effort it takes to do anything compared to someone without MS fatigue.
When my second child was a baby I experienced muscle fatigue to a degree. I found running around difficult, for example. But it didn’t really affect me day to day with the upbringing of my kids. When I was asked about this by doctors I remember saying, "fatigue? Who knows. I am a working mum of 2 small boys, I'm always tired! How much is my MS? Unsure."
My fatigue has got worse over time. My children are 9 and 12 now. They know at times mum will be tired and need time just to chill. For the last few years I’ve managed that by doing things like putting an audio book on. And just being with them while they play with things like lego.
They like to play football in the garden which again gives me chill time. They (sometimes!) help me cook, which teaches them life skills while lending a hand. Same goes for laying the table, carrying stuff. This isn’t anything any other mum wouldn't ask, but it has more of a helping role in my wellbeing also now too.
I have primary progressive MS and don’t have relapses. So although my condition has gradually worsened over the years, I’ve never had to deal with the unexpected nature of relapses. I know what I have to cope with each day.
Did you have to come off any pain medication when you were pregnant or breast feeding? And if so, how did you cope with your pain at this time?
I wasn’t on any pain medication. I did decide to stop breastfeeding at 6 months to start some medication. But every mum’s situation is different. Neither of my sisters-in-law have a MS but neither breast feed at all, for different reasons.
Mums do stuff in different ways for different reasons. It was important to me to try to breastfeed.
Do your children know you have MS? If so, how did you explain this to them?
We’ve never hidden my MS, so we’ve never had to announce it to them. As things have come along we just approach it appropriately for their age.
But I’ve always said that MS is so different for everyone. This is to make sure they ask me any questions they have and I’ll explain it - in a way that’s relevant to me. I hope this will limit their curiosity on Google.
We’re so open about it all, I don’t think they question much.
Read our tips on talking to children about MS
How has having MS and then being a mother changed you?
I don’t know what I'd be like if I wasn’t a mum with MS. But I wouldn't change anything!
I think being a mum with MS makes me focus on life and getting on with things, not always focusing on my MS. I am a mum first - who happens to have MS.
About Jo’s MS
I wasn’t officially diagnosed with MS until after I had my second child, although I was told I probably had it. I wasn’t on any disease modifying therapies (DMTs). When I did get officially diagnosed I was told it was relapsing remitting MS at first but this was later changed to primary progressive. I now take Ocrevus (ocrelizumab).
Read more about pregnancy, birth, breastfeeding and MS
Pregnancy and my MS webinar
Our virtual support events help people learn about topics related to MS, connect with others and share their experiences.
In this webinar we'll explore planning for a family and pregnancy when you're living with MS.
