Surfing the Wave of Spoonie Parenting

It’s been a while since I wrote a parenting post.  Today, I thought that I would touch upon what it is like for me to be a ‘spoonie’ parent and how it has changed over the 11 years that I have been a Mum.  For those that may not understand the cutlery analogy, read here! But, basically, it is the idea that those of us who have chronic illness/es, such as myself with MS, often have a limited amount of energy (let’s call this a number of spoons) that we need to finely balance out over the course of the day in order to be as productive as possible.  We start the day with a set number of spoons (energy) and once they are gone, they are gone.  Some activities use up more spoons than others (e.g. cooking tea uses up more than watching telly) but, ultimately, all activities, large or small, use up our rations. Some people compare this to running on a half-depleted battery; rest can help us to recharge our battery somewhat, but it never quite gets to full strength.

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I’ve had MS for a long time, almost 25 years diagnosed.  I have never been an adult without MS: I was diagnosed as a young teenager.  During that time, I have been away to university, got married, built up a career, and had children. My MS has been with me throughout, like water, ebbing and flowing, times of recovery and relapse, then big waves of progression when I hit my 30s.

Now my children are ‘tweens’ I have started to reflect on what that means for me as a spoonie parent.  I see things on Facebook that no longer seem to apply to me; memes of babies learning to crawl and of parents dealing with sleepless nights.  I still sometimes get those, but they are rarely to do with my children; more likely leg spasticity keeps me awake in discomfort.

It feels like yesterday…

These are bittersweet times; I can still remember clearly what it feels like to have little ones rely on me.  I loved it so much and enjoyed spending time with them, meeting up with friends for playdates, going to toddler groups, making playdough… I still had all the usual sleepless nights and exhaustion, but no MS relapses during this time.  It became difficult when my little boy became school age, however, and my MS started going into decline (the slippery slope to Secondary Progressive Multiple Sclerosis – SPMS).  I have two children two years apart; I’d be taking my son to school whilst doing all the usual pre-school activities with my daughter, whilst having to contend with ever-decreasing mobility and increasing tiredness…just when things were meant to be ‘easier’ (if we can ever apply this to having children!).

It was when my daughter started school, 4 years ago, that it really got hard.  I had started using crutches and even a mobility scooter, I was suddenly that mum who was different in the playground and stuck out like a sore thumb, at least to myself, when I compared myself to my friends.  Changes suddenly seemed to come thick and fast; I couldn’t work in the same way – this lead to loads of adjustments and changes, eventually leading to me taking early ill-health retirement last year. I couldn’t go out with my friends as often as I used to and I made a complete overhaul of my lifestyle to try and keep the symptoms at bay.

Still a parent, despite my MS

Throughout this, I was still a parent.  I was having to contend with working out who I was now with also trying to be the best parent that I could be to two headstrong, funny, brilliant individuals.  And I had no idea what I was doing; whether I was doing it right, or well, whether I was relying too much on my husband, their Dad.  Finding that balance can be tricky and, now that the kids are 11 and 8 (almost 9) it is still a learning curve.  Going back to the water analogy, I feel like I am ‘surfing the wave’, just managing to hold on and keep going, but I do worry that they miss out compared to a more able-bodied mum.

Many will know that I have recently had HSCT treatment for my MS.  This was intensive, both in regards to body and mind; I have never been through anything as intense before and I am sure that I will not again. And the hardest part of it all – even with the chest infection and the D&V – was being away from my family and, specifically, the kids.  I managed to see my parents and husband, who could visit regularly but, due to infection risk, under 12s were not allowed.  Sure I could FaceTime them on the phone, which I guess is the next best thing to physically seeing them, but the need to just touch them, ruffle their hair and give them a cuddle was just so immense.  I hope that I missed them more than they missed me – my husband certainly seemed to step up being cleaner, cooker, baker extraordinaire – and I know that in the long term the treatment will help me to be as well as I can be with MS (which will help me as a parent) but I didn’t half still feel guilty for putting them through it.

New challenges

As the children have grown, they may have become more independent, but they still have needs.  Their friendships, self-confidence, school work and extra-curricular activities can lead to worries that I try to support in the best way that I can.  Yet I am aware that I can’t be at every activity and I can’t accommodate the number of sleepovers my daughter wishes to have, due to my MS.  My daughter sometimes says she wishes I could do ‘what other Mums do’ and my son has said he loves me but not my MS. I approached their school to ask for support for them through ‘Young Carers’ groups and nurturing groups which they have since accessed.  Yet my son has now announced that he doesn’t want to have to do this, he ‘feels fine’ and isn’t overly worried.  This is great, but it is that up and down again – have I asked for too much, am I placing my own worries on my kids and overestimating just how much my MS could be affecting them?

I don’t think that it will ever become a settled sea; I need to recognise and acknowledge that parenting in itself is up and down, let alone spoonie parenting with the added worries about my own health and ever decreasing energy.  But, as all parents do, we spoonie parents do everything we can, to keep going, keep parenting as best as we can whilst enjoying our children as much as we can (and not become too frustrated with them, too often!).

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Are you a ‘spoonie parent’?  Has your parenting or its challenges changed as your children have grown up?  Sometimes I find it difficult to work out whether I am actually going through spoonie-parenting challenges or just parenting in general challenges!!

‘Til next time