Guest blog - motherhood and chronic pain , illness and disability

I asked Faye to blog again giving us her perspective on motherhood with chronic pain/ illness. I feel it’s important to read about different experiences of Motherhood.

What’s clear from my guest bloggers is that us mums acknowledge it can be tough, even tho each and every one us love our babies  – being honest and raw helps others feel less alone. We are bombarded daily on social media of picture-perfect parenting and it’s not real life.  Faye shares her story below.

We had our baby Theo at 32 weeks on the first of January, 2023 after a turbulent pregnancy (see other blog post) . To paraphrase, I spent weeks in hospital with sepsis and pneumonia because I have pathetic lungs and adrenal insufficiency. However, pregnancy ultimately saved my life and Theo continues to make every second of pain I have ever gone through feel absolutely worthwhile.

This post is more on ‘typical’ mothering, and trying to be a parent who also has complicated health problems. In theory, I would be unable to fathom how performing both would be possible. By that I mean taking my physical health – lung disease, adrenal insufficiency, fowlers syndrome, seizures etc – into account I would never imagine I would be able to be a mother.

Equally taking motherhood into account – the triple feeding I appear to have fallen victim to, sleepless nights, endless washing, cleaning & sterilising, lack of two seconds to sit down (this has taken me 2 weeks to write, grabbing seconds here and there!!) and of course the actual obsession with another human – it’s unfathomable to think this could be anything other than completely incongruous with chronic ill health and disability. However, somehow it’s working. And I don’t mean it’s running like a well-oiled machine, absolutely not! I’d say a better analogy is if you imagine a scenic cycle ride with stunning sea views, sunshine beating down on your gradually more toned and tanned arms and legs and a back pack full of cakes and Prosecco for the obligatory half way picnic. Picture the wonder of that (if it’s your cup of tea, which for many people I appreciate it probably is not…). Let’s say it is, but now amongst the brilliance of a joyful sunny bike ride; the chain on your bike keeps tangling and coming off, the handlebars are wobbly and the seat is too small, you’re pushing on creaking pedals the whole time and it’s making your glutes burn ! That’s my life. Absolutely bloody dreamy, and perfect, with my baby, my family and my friends making every day blissful… except that the vessel within which I am trying to enjoy this life is spectacularly broken, in need of the kind of MOT you need a mortgage for and progressively becoming harder and harder to drive. At risk of sounding like I did when I was a carefree teenager with no real problems at all: “No one understands!”.

Only now… I feel quite alone in the world of mothering on oxygen, mothering in agony, mothering through life threatening illnesses which have me hospitalised for weeks, mothering with rare conditions that many doctors haven’t even heard of and mothering through such insane exhaustion that some days I wonder how I’m still moving. The conundrum is that this body, this pathetic excuse for a body, made my baby boy. Somehow against the odds and although it almost killed me, this body created the life which gives me my own sparkling reasons to exist each day. If I were to complain to a friend, peer or family member about this I can almost guarantee they would say, in some roundabout way “but at least you have Theo!”. And for that reason I try not to. I used to have two beautiful friends who understood the horror of chronic illness. Both have sadly passed away and I often go to message them in times of struggle and am hit with a hammer of melancholy when I remember that they would not reply in this lifetime.

There are added complications when you’re a mother with chronic health problems. For example I recently attended a scan at the hospital. My darling baby was unsettled and crying so one of the technicians had to hold, jiggle and soothe him whilst the doctor completed the scan, meaning they had to make the notes they’d usually be calling to the assistant! Thankfully these people were angels and found me a quiet room to feed Theo in after and offered me tea! I also manage many many medications on a daily basis which has always felt like it takes a huge chunk of time, even pre baby. I recently spent ten days in hospital on forty mg a day of prednisone and was sent home with a slightly complicated weaning regime to get back to my usual dose of 5mg and 2mg which manages adrenal insufficiency. I messed up this regime, taking too little, because I was preoccupied with the baby and on autopilot taking my usual doses!

I prioritise Theo over everything else but when there is so much Theo admin and so much medical admin, not to mention life admin, balls do get dropped – just never the baby ones! And then there is the issue of actual hospital admissions which are beyond awful. I won’t go into the most recent one too heavily but ten nights away from Theo while I was too sick to look after him felt like it was killing me faster and more painfully than my lungs do. Every night when Tom took him home I felt like a major organ was being ripped from my body and I longed to feel the weight of his little body and I missed his smell, his smiles and even changing his nappies!

When they got back in the morning and Theo presented me with his gorgeous smile, my heart warmed and the fear and sadness immediately dissipated. So, parenting with illnesses has so many different complications, from the every day to the unexpected emergencies. Without Tom and both of our families and friends I don’t know how we would cope… Tom’s parents stayed while I was admitted on one of my hospital stays and looked after Theo while Tom worked, did nightshifts and kept our house clean and tidy as well as bringing me salads and drinks to hospital.

On another admission my mum stayed and held down the fort. Although we would cope without them, I’m sure, somehow, our support network is something we feel incredibly grateful for and it enables us to properly enjoy our baby. As well as family, I am also thankful that I have friends who understand parenthood! I met the most lovely lady when Theo was in the NICU. Her baby was born nine days after Theo and we spent many nights together in solidarity in the sometimes sad and eerie hospital ward in low light, listening to the chimes of incubator alarms and the teeny wails from lungs which weren’t quite ready to be hit by the big wide world. We keep in touch and meet for lunches and coffees where the empathy is palpable and the giggles and the cries are as real as the caffeine in my iced drinks (yes I drink caffeine and breastfeed! Hate all you like, I can’t stay awake after 2 hours sleep without it!). We also have friends with babies and friends without babies. Unfortunately none are local which makes Tom’s long twelve hour shifts feel like they go on for days, especially when my body is struggling (let’s face it, every day!) Those afternoons… when I just want to curl up in bed and have a nap but Theo is wide awake and waiting for me to play with him or feed him, they can feel so endless and exhausting.

In fact, I am currently sat on the sofa after a morning of racing around doing pharmacy, GP and house buying admin, wishing I could have a nap! Theo was too warm and wouldn’t sleep so I have finally settled him but he cries when I move him from my chest so we are stuck in a sweaty cuddle to allow him to snooze, and completely prevent any resting action on my part. He’s worth it, but we do hope Tom doesn’t have to work late. One thing about the exhaustion of parenting and the sterilising of bottles, struggles of breastfeeding anda ridiculous expenses, is that every parent gets it! After years of complicated, rare health problems which are hard to understand and diagnose, it’s actually quite nice to have difficulties that everyone relates to… it doesn’t always make them easier but it’s less isolating to be able to tell someone ‘oh gosh, my baby is having trouble sleeping and won’t settle in his cot!’ And someone else say ‘me too!’ Rather than ‘I have no idea what you’re talking about’ – which is usually the case when it comes to my health problems.

So, motherhood and chronic pain / illness and disability? It’s tough, it’s tiring, and there are added complications which people with illness alone or children but no health problems would never understand, but none of the difficulty can possibly detract from the wonder you feel when you look into your child’s eyes and see yourself and your (now second, sorry Tom!) favorite person in the world gazing back at you, loving and beautiful. We have a lot of hurdles yet to come and I do feel genuinely afraid of what our future holds, but I am, as always, optimistic that a cure will appear for my health and make life that bit less tricky. I hope you have enjoyed this blog! See links to the previous one where I rave about how much we love Jess and her photography, and please see my personal blog which I am slowly growing – when the baby allows me to!