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.