For the past week I’ve set an alarm to go off at 9pm. It marks the point in the day where I turn off my phone, tablet, laptop and TV and I spend an hour winding down in preparation for bed.

Over the week I’ve laid on my bed listening to podcasts or audiobooks, I’ve given my perennially tense shoulders and neck massages, I’ve drunk soya hot chocolates, I’ve meditated and once or twice I’ve just gone to sleep early. It’s been a space to be quiet and still, and to focus on doing something that makes me feel good.

I often feel a mixture of selfish and useless because I spend so much time engaged in ‘self-care’, while everyone around me manages to have vibrant family, work and social lives. To the outside world, my everyday life looks like other people’s self-care days.

For my husband, for example, self-care is having a lie in and/or a nap at the weekend. It’s saying no to a social engagement in favour of some down time binge-watching a Netflix series. It’s doing nothing he has to do but things he wants and likes to do, like cooking a comforting but healthy meal, or going to the gym because it feels good. But for me, many of those things are things I have to do in order to avoid debilitating symptom and illness flares.

What I’ve realised is that my day-to-day routine isn’t self-care, it’s caring for myself – an important distinction. Caring for myself isn’t indulgent or selfish or a nice-to-have, it’s necessary and I have to do it.

And because I’ve been spending so much time focused on caring for myself, on doing what is necessary in order to manage my symptoms and keep myself on an even keel, I’ve neglected self-care.

So now, at the end of the day when I’ve been to all my appointments, done all my exercises, and when all my reminder alarms to eat, drink and take medication have gone off, I stop. I take time to just be kind and gentle to myself, to be loving towards myself, to be and feel indulgent.

That time, that hour out of my day when I would have just been watching American crime dramas on TV, has been lovely. I’ve felt genuinely better for it. It’s felt like I’ve invested some time in making myself feel good, rather than making myself feel human.