Living With Disease and Re-discovering my Health as a New Mum

Living with disease

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It’s New Year’s Eve and I’m sitting on a sofa, looking out of the window at a grey, wet, windy beach on the south coast. The rain is horizontal. The clouds are whizzing overhead and the view is many shades of grey. I feel like I’m worlds away from where I was this time last year when my view was of Miami beach and I was just two months pregnant with my first son Ziggy. I was healthy, relaxed, fit, tanned – all of the things I love to be!

Each year for the past four years, I’ve gone through the same ritual of taking some time to reflect on the year gone by and think about how I want to head into the year ahead. I’m an achiever, in that I’m a goals focused person so this usually comes naturally to me. This year I’m really struggling to find the headspace to do so and it’s no coincidence that I’m a relatively new mum.

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Motherhood seems to have come quite easy to me. That’s not meant boastfully, please don’t judge me for saying it. Really, I’m just relived as I really thought it would be a massive challenge for me. I have two lifelong diseases: dilated cardiomyopathy & ulcerative colitis. Dilated Cardiomyopathy is a disease of the heart that causes it to weaken. I have a mild form but my brother was really very sick with the disease – that’s a story for another time.

Ulcerative Colitis is an Inflammatory Bowel Disease which causes pain, bleeding, lack of nutrition absorption from food, fatigue…the list goes on.

Over time, both diseases have put some restrictions on my life but I have always tried to live it my way and to my own personal maximum.

Over the past few years I made some changes in the quest for good health both mentally and physically. I gave up a fast paced, high profile, whizzy travelling job for Oxfam and moved to a local charity cutting my commute, my working hours and my stress levels. Game changer! I’ve also been working hard on setting up my own wedding planning business in the quest for flexibility and a further lifestyle change.

I’ve changed my home, my diet, my exercise routine and pretty much my whole lifestyle in the quest for good health both mentally and physically. Health has always been my number one priority when I’m committing to my annual goals but the latter half of this year since the amazing Ziggy was born, it’s fallen down the pecking order too many a time.

My pregnancy was complicated because of my heart condition. At the time, my husband and I went on with the frequent hospital appointments, the tests, the hospital stays but it wasn’t until after Ziggy had safely arrived that we dealt with what had been quite a stressful time, during quite another stressful time as new parents.

So really, what I need now is to reignite my old self-care rituals: meditation, acupuncture, daily journaling, eating good food, taking regular exercise, taking my medication and getting as much sleep as possible. This all feels so hard to do with a 5 month old, my own business and very high expectations of myself in every other aspect of my life.

Pigeon step by pigeon step, changing small bad habits that I’ve gotten into, I can bring this back. I started from scratch once before and although cliché, I can start afresh tomorrow with a new winning streak.

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5 Comments

  • As a fellow sufferer of UC (and currently having a flare up- I feel like I’m just getting through the days and have no quality of life) I’d love to know what steps you have taken to reduce your symptoms in more detail. I know everyone me is different but I need to try anything that will help. Plus I think it’s important to talk about these ‘invisible illnesses’ and raise awareness. Everyone I have talked to about my disease seems uncomfortable with it (as it’s bottom related!) but I just want to raise awareness in my own way. I have also had comments that I don’t look ill but most people don’t see the hours spent on the toilet before I attempt a day out or the debilitating exhaustion when I have pushed it too far. I look forward to reading more

    • Helen I’m so sorry to hear of your flare up. I’ve tried to write about my management of UC on my own blog Lucytwist.wordpress.com. It’s mainly been through reducing stress, eating really quite a strict diet, lots of sleep and a stable exercise routine. It’s hard to spin all those plates but when I’ve got it right, I’ve felt awesome! Wishing you well xxx

  • Lucy, thank you so much for sharing your story. So beautifully written and whilst I only have one condition I can so relate to your points here. What I will say, is that self care DOES return, you’re still in that pretty intense phase of motherhood. My daughter is now four and although I KNOW I could do more for myself, life has been so much easier since she has been of an age where she understands that “mummy needs time for herself too”… we certainly still have our tricky days, but it does get easier… or perhaps I have adjusted once more to make it work, her needs and mine.

    Anyway, I’m rambling, thanks again for a great post. Looking forward to reading more soon.

    • Thank you for the resssuirng worlds Jessica. I think the further away I get from Ziggy’s birth date, the more self care I’m able to achieve and I’m really feeling a lot better even just a month down the line from this post. I hope you’ve had some ‘mummy time’ today! x

  • Hi Lucy, I’ve just read your pieces on here. I spent 11 days in hospital in January with UC, so your articles are aptly timed for me…especially after laying in the ward, staring out of the window for hours on end, and making plans to make (more changes!) to try and live life normally with it! I am a mum of 3 little ones (and work part-time in the land of weddings too!). I look forward to reading more here and over on your blog. Wishing you well and I hope the sleeping improves. It is so very hard but you do come out the other side, I promise! x

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