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“I realised I am not like other mums”

carla.jpgMSer and career coach Carla King on the ups and downs of parenting with MS

I’ve wanted to be a mother for as long as I can remember. In my role, I am simultaneously elated and exhausted but the reward far, far exceeds anything that might feel testing. TV and film often send up parenthood with comic effect. We laugh along because it’s funny, but the truth is that mixing multiple sclerosis (MS) with parenting can be more guilt-tripping, than comedic.

Idealised parenting

For years, I would push myself to get through the school run, particularly as this was toward the end of the day by which time my energy reserves were depleting. This meant I could just about muster collecting my son and the bus ride home, but not to go into lengthy discussion with other parents. Why push myself? Because I thought motherhood was all about sacrifice and how I was supposed to behave, even with MS.

Adapting to parenting with MS

Even before lockdown, I had scaled back playdates due to energy levels required to ‘entertain.’ By this I mean just coping with the noise, keeping one eye on preparing for a feeding frenzy and the other on anyone intent on killing each other. Yet children have an extraordinary way of turning anything into play, so now there are many more Zoom, WhatsApp and phone calls.

I am heat-sensitive, which makes me unwell. In the height of the summer, I avoid the park after school. If we don’t end up in our garden, you’ll find us making ice cream smoothies.

Routine isn’t just for children, some of us with cog fog need it too. If I have some semblance of routine, I can remember tasks more easily, for example, putting out school uniform on a Sunday night, or PE kit ready for Tuesday.

Halloween at Carlas.jpgReframing

In mid-October, I experienced a level of fatigue that knocked me for six. I don’t know why. A couple of weeks later, having decided to forgo trick or treating, I hatched an alternative plan for Halloween. I baked for days and put on a surprise ‘party.’ I really thought this would come at a price, but it didn’t. Literally, zero fatigue. Sometimes, we can track trigger points but, as in the former example, MS sometimes can be a conundrum to get through and not question.

The important take-away? My son had his Halloween (and some fatigue you can’t predict).

Learnings so far

I remember doing everything I could to make sure that my child didn’t feel I was different to other mums. This came at a cost and a realisation – I am not like other mums. A couple of years ago, I decided to stop comparing myself to anyone else. The only person I need to worry about is the only person in the world who calls me ‘Mummy.’ In all honesty, we would both rather I be authentic.

Avoiding MS parenting guilt

  1. Focus on what you can do, not what you can’t.
  2. Talk to your child. Be age-appropriate, but be open. They really appreciate it and they understand more we think. No young person needs to be worrying about us unnecessarily.
  3. As tempting as it may be, stop comparing yourself to others.
  4. Focus on what you are giving your child. Think about the empathy, values and resilience we are developing in our children.

Ok, so my bakes aren’t always perfectly decorated, I’ll not run marathons or paraglide, and I’ll always have to work harder than a parent without a chronic condition. But I’ll always try my best and I’ll always be me. My child doesn’t need me to be everything all of the time. When the chips are down, Mummy is enough.

 

Carla works as a Career Coach and was diagnosed with MS in 2008. Carla often supports MSers through diagnosis and beyond. She also presents to audiences from the MS community and the MS field. Carla is the author of a blog about living, working and parenting with MS, called My MS Bully and Me.