It’s been rocky. Why did I ever think it wouldn’t be?
It’s easy to make glib protestations about how you will still be in control of your future when you sell yourself the story about how you’re going to overcome the demons you’re grappling with, that you’re going to turn your negatives into positives. All that self-help psychobabble we turn to to try and make sense of our misfortunes.
The reality is: reality. Unpredictable, chaotic, unfair.
I’ve been keeping on, trying to stay ‘normal’, trying to have a decent job, be a good mother, be on top of the admin, the cleaning, the children’s complex calendars of social engagements. I can’t.
The MS fatigue that’s blunted me since long before I knew its cause has tightened its grip over the last few months, turning me into a stuttering, confused, dead-eyed version of myself at 2pm sharp every day. Turning my evenings into a sofa-bound slump as my husband makes dinner and puts the children to bed, turning him into a single parent long before he should have to be.
Funny how you get into a routine that carves such a deep groove in your life for itself, that you can’t see how you could live in a different way. But I went on holiday, and, freed from the obligation to expend my energy on work, my life became the life I was missing out on – the one where my children were happy because their mother had the energy to play with and listen to them. The one where I stayed up for long enough after the children had gone to bed to have meaningful conversations with my husband about things that we’re genuinely interested in.
Sometimes the crossroads you’re at come into focus in a sudden moment, like a thick mist rolling from the path you’re on. That sounds like psychobabble again, but it’s the image that best explains this experience.
I’ve realised that life has to change, that I need to ‘give in’ – just a little – to stop this disease ruining the time I have left, and the lives of those closest to me. So I’m cutting my working hours, letting go of the idea of a ‘career’, and changing my focus to the small stuff that’s really the big stuff – the daily routine, the tasks in the house, and making my world work for my family. The decision that I’ve fought against for so long has brought me a peace of mind I never imagined it would.