Back before my child was even born I knew chronic pain would make motherhood tricky for me.  Chronic illness is a fact of life for me – I’ve had fibromyalgia for over a decade and joint hypermobility syndrome (JHS) since my teens – so I knew before bringing children into the world that parenting would prove a challenge, and one I’d need to implement a coping strategy for.

Living with chronic pain means I struggle to do even the most basic of tasks and as such need help with everyday life. I get a ton of joint and muscular pain, physical fatigue, cluster headaches, irritable bowel and various other frustrating ailments mixed in. So as you can guess, life is tricky just looking after myself, let alone a mini me.

The thing about chronic pain is it’s a temperamental beast. It doesn’t like to be controlled, and it’s about as predictable as my chances of getting a decent night’s sleep tonight; it may be bearable, it may be a total write off. And that’s before the third (little) person is added to the bed, an extra reason perhaps why we ended up co-sleeping, because my poor quality sleep experience was already an occasion of back breaking restlessness.

Essential parental activities aren’t stress-free for a typical healthy person, so you can imagine how eventful life is for someone like me.  Moving baby from A to B is a pretty necessary practice when you come to leave the house, so for us a pram was the obvious choice when not taking the car. It’s surprisingly useful for getting myself from A to B too.  Though pushing against the weight of a toddler and a ten kilo pram is pretty much an Olympic sport, grabbing hold of the handle bar gives me something to steady myself and drive my body into.  So I fight to push the pram – without it I’m left to my own devices of slumping along with no aid.

It’s even worse when Reuben wants to be carried because then the weight’s all on one hip and my pelvis gets a thrashing. Even when I try to ease the load and disperse the discomfort by putting Reuben in a baby carrier, it’s torture on my back.

When going mobile, it really is a case of weighing up the pros and cons, or rather, deciding what’s going to hurt the most today.

Looking at the way we parent, we seem to do a lot of co-sharing in attempt to lessen the workload. I’ve vastly given up on bathing my baby independently in favour of having a bath together, mainly because I can’t cope with the discomfort of leaning over the bath – aching legs, stabbing hips and the pins and needles down my arms – and partly because it saves my energy from having to enact a duplicate activity and showering myself.  Co-sharing doesn’t just saves time but emotional and physical stress.

Fibromyalgia’s fatigue can make daily life exhausting.  It physically incapacitates you from doing what needs to be done and what you want to do.  And when you feel limited it’s mentally exhausting too.  Nothing’s worse than not having that ‘get up and go’ when you really want to.  And that’s how depression can kick in; when you have really tough days it’s hard not to feel useless and totally fed up.

Living with, and parenting with, the challenges that chronic illness demands of me makes me feel restricted as a mum.  When it was just me, I probably accepted it much easier because it didn’t affect anyone other than myself and my other half at most.  But now I have a child dependant on me my limitations affect him, which means my ability to meet his needs are compromised.  If I’m having a ‘good day’ I still need to weigh up what I’ll be able to manage, bearing in mind what I won’t be able to do if I’ve exhausted my energy.  Anything taxing – walking down to the doctors, carrying Reuben around Tesco or just pushing him in the pushchair can majorly drain me so I’m too worn out and in pain to do anything else after it.  Sometimes I have no choice but to sit it out.  Sometimes it’s a pyjama day.

Those afflicted with a physical chronic illness (coined ‘spoonies’ after the spoon theory) know only too well how daily life management is about choices – well spent or wrongly judged. It could be a positively looked upon technique as a way of ensuring a day well spent, no time wasted. But it rarely feels a privileged outlook on life, more a method of limiting life’s pleasures and not living life to its fullest.

I often wonder how I’d cope doing it all alone. Probably out of fear, because I genuinely don’t think I could do it without the support I get. I’m lucky to be doing life as part of a team; granted, a team that’s decidedly more laiden with responsibility to the other side, but a team none the less.  On paper I’m Reuben’s main care giver, but the reality is I’m cared for, and helped to care.

My husband, Reuben’s daddy, doesn’t recognise how important a piece of our puzzle he is because the jobs he does seems insignificantly simple. But for me, it’s all the small tasks that are greater, the jobs I struggle to do collectively or on their own. Doing the night feeds (a lot of the feeds), cleaning the bottles, lifting the pushchair in and out of the car, heaving a slippery wet toddler from the bath and preparing dinner (because if it’s mashed potato for tea there’s no chance it’s coming from me), and that’s all on top of fitting in work and the regular household chores that drain the only energy I prioritise for my baby. To a ‘spoonie’, this is essential life matter.

So you see, to me, parenting with chronic pain is a case of martyrdom. I choose pain over my child where the decision allows and as much as rest and recuperation ought to be essential, my mother instinct doesn’t allow me to.  Not only do I feel guilty for considering myself, but I can not for the sake for him.

If I can ever look at my chronic pain in a positive light, I can only wish it nurtures a caring attitude in my child.  Teaching him that helping mum with the washing is kind.  That helping dad with his tools is rewarding.  That sharing jobs is fun.  And send him out into the world with empathy and heart for the small man.

Parenting with a disabling chronic illness is extremely hard but it is possible.  I just need to learn that sharing responsibility and delegating tasks doesn’t mean I’m any less of a good, doting mum.  There’s no shame in doing the best you can, while accepting help at the same time.  I’m not required to do everything to be everything to my son.

What’s your experience of parenting with chronic pain illness?  Does it define your parenting role or hinder it?  Do you feel any less of a parent?  Maybe your disability makes you a better parent?  I’d love to hear your thoughts in the comments below.