“Self-care is not ‘me first’, it’s ‘me too’.”

Caregiver and health expert Nicole Stephens learned to prioritise moments of ‘me time’ – however small – the hard way.

As a nutritionist who’s worked in the NHS for two decades, Nicole Stephens knows her way around wellness. But she’s also a mother whose firstborn barely slept for five years. A mother who, like many parents raising children with complex needs, relied on caffeine and sugar to get through the days. That is, until a major health scare saw her turning things around.

Living in West London with her husband, Tyrone, their now-11-year-old daughter Amber – who has a rare genetic condition called DDX3X syndrome – and their youngest, six-year-old Skye, Nicole has learned the importance of looking after herself. She’s also discovered methods of doing it that are actually achievable for people who are caregiving, parenting and working.

Read on to find out what these methods are, as Nicole shares how she got clued-up on caring for number one (that’s you, btw).

Amber’s diagnosis is super rare. How did you come to discover it – and how do you deal with the unknowns that come with it?

For a long time she was just classified as having global developmental delays. Our paediatrician suggested going into a study that could tell us what the cause of her delays are and, about a year or two after being in that study, we got a phone call saying that they’d found out the cause of her delays. That’s when we got a diagnosis – DDX3X syndrome.

Prior to that, I’d joined the Facebook group of an organisation calledSyndromes Without a Name (SWAN) UK. As a group of parents, we didn’t know what the reason for our children’s disabilities were and that pulled us together. That online community was invaluable for me at the time. It felt like there were other people that got it – that unknown-ness – which helped.

I suppose the way that I personally coped with it was, and is still, acknowledging that a lot of things are unknown. I don’t know what’s going to happen tomorrow!

It’s really cool to have that perspective – and kids with unknown futures really open our eyes to this. Has being Amber’s parent changed you in other ways?

Absolutely. She also changed what I thought I would be like as a mother. And as a person, and how I see the world. In some ways she’s made me a far better human being than I ever was or could ever hope to be. I feel like I’m more compassionate. I have more empathy. I have more understanding of struggles. I’ve got the knowledge and understanding that things may just not work out the way you think they’re gonna work out, and even when they don’t, it’s so fine.

It’s wonderful to hear you say that – especially as I know you’ve come through challenges, particularly around your own health. What did your early years of caregiving look like?

I was surviving on a lot of sweets and what I call “the full-fat Coke” – the one that’s got all of the sugar and caffeine. I was doing that because one of the symptoms of Amber’s condition, which we didn't know she had until later, is issues with sleep. She didn’t sleep until she was about five and even now, she wakes through the night three or four times a week. If there’s something significant that happens or a big change, her sleep is impacted. She started high school in September and it probably wasn't until the February half-term break that she settled down back into her sleep.

So in the early years, I operated on very little sleep – and I was working full-time. I also had another baby and by the time I’d finished breastfeeding her, I progressed on to wine and big bags of crisps that are meant for sharing.

It’s so interesting that this happened to you, as a health and nutrition expert, who knows all about this stuff!

You’re right, I know this stuff – and I had good intentions! I’d pour the cripsts into a bowl because that’s what I tell the families I’m working with. “There’s nothing wrong with having a treat, but try and put parameters around it to add in some elements of control.” So I’d pour my crisps into a little bowl, put the packet back in the kitchen, eat my little bowl of crisps and then think, you know what? I’m just gonna have another bowl, and eat the whole bag in little bowls.

These were not the best coping mechanisms and I ended up making myself very unwell. Despite the caffeine and sugar, I was exhausted. I was tired to my absolute core and nothing could take away that tiredness. My bones were hurting. I was getting ill all the time with colds and things like that. It just wasn’t me – that’s not who I am.

I remember going to the doctors and saying, I just don’t feel well and I don’t know what’s the matter. They said, “Look, we’re just going to do loads of blood tests”. My results came back – and I was pre-diabetic. It was a real wakeup call and I just thought, I’m really going to have to get a hold of this. There are things that I can do to make myself feel well that don’t necessarily involve me eating a whole bag of crisps and two or three glasses of wine on a Saturday.

Don’t get me wrong – I still have crisps and wine. That’s one of my happy places. But it’s not my only happy place now because I know I need to be well in order to look after my family. I still spend a lot of my time being tired but it’s a different type of tired. I feel tired but energised at the same time. And that’s because I now choose to do things that nourish me.

What are some of those things? What are the new happy places that you’ve discovered?

I eat well. I rode my bike to do a school drop off today and got a rush of endorphins from it, so I feel better in my mind as well as feeling better in my body. Also, sleeping. Often, especially as caregivers, we’re told how much or how important sleep is. Sleep is a luxury that some of us are not afforded, but we can rest – and rest can take so many different forms. Learning this was a game changer.

I got into yoga Nidra, which is a deep rest and relaxation practice. Sometimes even on a work day, if I’ve not had as much sleep as I would have wanted, I might put on meditation and spend 15 or 20 minutes on the sofa because I know that it’s nourishing and gives me rest. The other thing that I call on that really energises me is spending time with people I love. It fills my cup.

How have you and your husband, Tyrone, looked after your relationship since becoming parents?

By making time for ourselves outside of being parents. Sometimes that time for ourselves looks like date night – and date night is not out somewhere fancy. We call it “date night” and we do exactly the same thing that we normally do, which is sit on the sofa together and watch something on TV, but instead of me wearing my pyjamas, I’ll put in some effort. Maybe we’ll have some wine and sit and eat together.

We really work on our communication and try to be honest and open about how we feel. That’s not to say everything’s all roses and hunky dory – sometimes we do butt heads. I still do feel resentful and I’m sure he does too, sometimes, but we try to resolve things and make sure everybody's feelings are validated and everyone’s feelings are allowed.

I love your version of “date night” because it feels achievable. What are some other things caregivers can do – particularly those that are still in survival mode – to look after themselves?

Even the words “self-care” and “self-care practises” can feel like just one more f*king thing that you've got to do. And when you don’t do it, then it’s just one more thing to feel shtty about. So I’d say focus on micro-moments rather than adding something that feels overwhelming.

I build in micro-moments to my day, which could be just five or 10 minutes. Maybe I’ll sit in the garden with a cup of tea, no phone, no laptop. If it’s cold, I put my coat on. I mean, I live in London, so it’s not like the countryside. It’s not peaceful. Sometimes I hear police cars going past and that’s okay. It’s just about being able to have time to feel present in that moment.

This time helps me connect with my body and think about what I need. Like, how do I feel today? Do I feel a little bit tired? What does that mean? Can I get an earlier night tonight, or do I just need to try and take some more time to rest? Am I thirsty? Have I drunk enough water today? Just those little check-ins that I can do with myself.

I also think we need to recognise that we’re actually allowed to look after ourselves and prioritise ourselves, and that’s okay. I love the words that Audre Lorde wrote in one of her books: “Caring for myself is not self-indulgence, it is self-preservation and that is an act of political warfare.”

Self-care not being necessarily “me first”. It’s “me too”. I’m allowed to do things for myself and I want my kids to see me looking after myself and knowing that as a woman – and particularly as a Black woman – I am allowed to take time for myself.

It’s not everybody first and me last. It’s okay to say, no, I’m going to do that because actually I’m choosing to have five minutes to myself. My youngest is so good at that now. She’s like, “I just need five minutes of peace. I’m going to go up in my room and close the door. If you need me, can you knock before you come in? I just need five minutes.”

You’ve set a fantastic example for your girls by showing yourself that kindness and giving yourself that little bit of space when you need it.

I also allow my kids to see me not being perfect. I allow my kids to see that there are things that I find hard and that’s okay. Just being able to say, “I lost my patience and I lost my temper. I was finding that moment hard and I took it out on you. That is something that I shouldn't have done, I am sorry and I will try harder to make sure it doesn’t happen again”.

We’re allowed to lose our sht and they’re allowed to lose their sht. It’s all about how you come back from that and repair things with the people you love the most.

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