It’s challenging enough to bring a newborn baby home from the hospital, especially when it’s your first child. Throw into the mix that my little girl was born prematurely, that we were supposed to move house the week she was born and, finally, that I live with trigeminal neuralgia – and what you get is the toughest few months of my life!

Since giving birth, my trigeminal neuralgia has slowly crept back across my face and I am currently living with little flare, after little flare, in bursts every few days. I haven’t yet experienced one of my big flare ups of pain, but I know one is very overdue now. When my face hurts, I find it best to try not to move my face.. but I have a baby now, who needs talking to and smiling at! I’m navigating coming out of remission the best I can. I don’t think there’s a right or wrong way to tackle having severe facial pain with raising my daughter. Some days, I’m just going to be a bit more boring for her than others!

I have had chronic fatigue for several years and could easily sleep for 10 hours a night, with a few naps throughout the day. I am exhausted, no matter how much rest I get (and no matter how much exercise I get, for you health nuts out there that thing exercise cures every ailment!), but with a newborn baby, I no longer have the freedom to sleep whenever I need. I’m very blessed that my daughter sleeps at night, but she is still very young and does a lot of tossing and turning, the occasional need for a nappy change and spitting her dummy out and instantly regretting it!

When I brought her home from the hospital at 5 days old, we were on strict 3 hourly bottle feeds, throughout the day and night. I was sleeping in hour long bursts (at best!) and there were times I could feel myself falling asleep as I was feeding her. Luckily, she gained weight well and now, at 4 months old, she goes for around 11 hours without a bottle, so the wake ups in the night are just for nappies, her dummy, a bit of fussing or a cuddle.

The sleep deprivation must be hard for any new parent, but I’m finding it pretty crippling at the moment. Still, her little smile when she wakes up at 5am, asking for her morning bottle.. that makes every sleepless night worth it.

The tiredness has also affected my eyesight. I have rubbish eyesight anyway to say the least – my left eye is pulling all the weight and gets tired very easily. Now I’m exhausted all the time, my poor eyes definitely don’t want to focus on a film in the afternoon and I doubt they could manage much of a book after teatime. I recently went to the opticians to declare that my glasses were no longer working and that I must need a stronger lens, but was sent away with almost exactly the same prescription, because it’s just my tired eyes.. a combination of my left eye working overtime to make up for my crap right eye and the fact that I get less sleep than I need.

Something I can’t blame on the exhaustion is my memory. I have a rubbish memory on the best of days – the chronic pain ‘brain fog’ is real! – so sometimes I can’t quite remember when my daughter last had her nappy changed, how much she ate, or what time she had breakfast yesterday. When her dietitian asked me how much she had eaten the day before and I couldn’t give her the exact amount, I knew it was time to start using an app on my phone to record this information. I use ‘Baby Daybook’, a free app I downloaded, which lets you record the times of your baby’s feeds, nappy changes, sleep routine and loads of other activities that you might find useful to look back on. It is completely customisable and free. You can also add different people on to the account, so they can add nappy changes or feeds from their phone, so I have my daughter’s dad and grandparents added as ‘caregivers’ too. This means, at handover time, there is no “when did she last eat?” or “does she need her nappy changed right away?” because I can just check the app to see that it’s been an hour since she last had a big bottle of milk and know that she won’t be hungry for a little while yet!

Physically, I have terrible hip and back pain from having pelvic girdle pain in pregnancy. There have been a few times I have found it near impossible to get up with her in the night and codeine has seen me through a few days, whilst I still wait for my physio. Lifting my daughter shouldn’t be causing me discomfort, but unfortunately my midwives didn’t send my physio referral off when I was pregnant, so I’ve been in pain for months longer than I needed to be.

Despite all my aches and pains and my low moods from lack of sleep, having my daughter for these last few months has been the most amazing experience. My bloody useless body (that I always complain about!) gave me a baby and she is absolutely incredible in every way. I feel like I have nothing to be sad about when I see her smiling little face. I care so much less about being in pain all the time, when she is playing and laughing. Her pregnancy put my facial pain into a temporary remission (how perfect is she?!) and being her mum makes every day worthwhile.

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Trigeminal Neuralgia