Nephrotic mumma: chronic illness and motherhood by Sophie Clifford

Living with an invisible chronic illness isn’t easy: you end up having rehearsed answers to lots of questions about your health, you know what it’s like to live with permanent fatigue, big worries about the future are just things you think about every day, you are incredibly good at collecting water samples in tiny bottles and you are probably on first name terms with a few of the nurses at your local hospital. Earlier this year I decided to add a baby into this craziness and the last 7 months have been the biggest learning curve of my life.

Don’t get me wrong, I would not change being a mum for the world. It is the best thing to ever happen to me, especially when I wasn’t sure if it was something that was even possible. However, 4:30 wake up calls when you are struggling with the side effects from an infusion isn’t the most helpful way to recover. Mostly, me and Jude; that’s my little boys name to save me calling him baby all the way through this, have adjusted well. We’ve coped with a pretty stressful induction as I wasn’t allowed to go over the 40-week mark due to my nephrotic syndrome. I had a relapse into my condition when he was just three months old and we muddled through meds, changing our feeding and infusions on the day ward.

We may have managed to get through my relapse pretty well, but it brought back something I had a lot in pregnancy; the fear that due to having a chronic illness and everything that goes along with that, I would not be a good mum. The guilt I feel when I’m fatigued and aching from rocking him to sleep is inescapable, the worry that I’m not going to always be my full energetic, up for anything self when he needs me weighs on me heavily and I think about it a lot. Due to having to reintroduce my medications I had to stop pumping milk a lot earlier than I had planned and that was something it took me a long time to be happy with. I was never the sort of person to be like I must breast feed but, it felt like the decision was took out of my hands by my health.

Despite the worries I’ve carried around, because of my own journey with chronic illness, I know that Jude will be raised to be understanding and empathetic of peoples struggles, whether they are visible or invisible. He will know that everyone is different and that should be celebrated. Whenever I worry about my ability as a mum, I just have to look at Jude’s smiling face and know that he is happy, healthy and loved. Whatever comes our way with my health or anything else, my little family will muddle through it together.

Rare disease day 2022

Hello, my name is Jess and I am a Zebra!

RARE DISEASE DAY 2022🦓

Today is international rare disease day, a day which means so much to me as a person with multiple rare diseases! There are over 6000 rare diseases and so many people have to fight for care every single day meaning they have to teach and guide healthcare professionals rather than the other way round!

Read moreRare disease day 2022

Family Matters Campaign for Huntington’s Disease

  May is Huntington’s Disease Awareness Month. This year the national organisations that support people impacted by Huntington’s disease across Ireland, England and Wales, Northern Ireland and Scotland, have joined together as the Huntington’s Disease Alliance UK and Ireland. Family members from each region are sharing their stories and contributions in the collective ‘Family Matters’ … Read more Family Matters Campaign for Huntington’s Disease

A student’s perspective on communicating with families of children with learning disabilities

Chloe Hawkins – Learning Disability Nursing Student, Northumbria University, Newcastle, UK   Terminology when supporting families of children with learning disabilities is as vital as the nursing care we provide… Specialised family support for all is an essential part of nursing care. Recent figures reported by the International Family Nursing Association show how increased family … Read more A student’s perspective on communicating with families of children with learning disabilities

Pregnant women and their families should not be left behind in the fight against COVID-19

Professor Hora Soltani MBE, PhD, MMedSci, BSc, RM I am not an expert in communicable diseases, particularly with this strange virus which caught all of us offhand. However, out of professional and personal curiosity, I have been looking at the literature surrounding COVID-19 and pregnancy adverse outcomes and explored some recent evidence on the short … Read more Pregnant women and their families should not be left behind in the fight against COVID-19

A student’s experience of family nursing

Emily Carr – Adult Nursing Student, Northumbria University, Newcastle, UK   My experience of family nursing The word ‘family’ evokes, for many, the traditional sense of a nuclear family: wife, husband and children, but the modern world demands an ever developing need to move away from this restricted view. This is especially pertinent within the … Read more A student’s experience of family nursing