Julie Helen: ‘We never know who is wishing for the life that we have’

I woke up a few mornings ago and my first feeling was that my body felt good. I felt properly ready for the day. I had slept well so I felt refreshed and I couldn’t feel a twinge of pain anywhere.

This sort of start is unusual for me; I generally take stock of the aches and twinges throughout my body and my brain can feel quite foggy as I try to kick into gear.

I remember feeling this way even as a young child and it was always largely related to the level of activity I had done in the days leading up to it.

I have always felt cerebral palsy in my body so I am very used to it. I pull myself out of bed and start getting dressed and, slowly but surely, I get myself going.

To wake up not feeling like I had to drag myself around felt great.

I am always aware that, as a disabled woman, I am very lucky that I can get myself out of bed and get dressed and ready, even when I feel a little sluggish. There are many people who need assistance for that part of their day and have to wait until someone else is ready to help them.

Most of the time, especially when I have something to do during the morning or a place to be, I can distract myself from pain and discomfort by just getting on with tasks. I even sometimes feel a bit proud that when I need to, I can conceal the most challenging parts of my disability behind the closed door of my home. That’s not always possible, but when it’s just the morning start-up, nobody has to know about it, except me.

When I woke up feeling fresh and pain- free, I tried to remember when last I had felt that way and I couldn’t put my finger on it. My mind started racing to figure out what I had done to feel so good.

It was nothing groundbreaking. I was only a day after a physiotherapy appointment so all the niggles in my muscles were about as good as they get.

A week before had been the mid-term break which had been busy so I had built in time once school restarted to have slow breakfasts, and give myself recovery time.

It sounds a bit strange to talk about recovery time for ordinary life, but it is reality for me that if I have busy days, I need downtime afterwards. I always thought that resting my muscles and joints was enough but in recent years I know I need time for my brain.

When I am moving and just going about my day, my brain and nervous system are on extremely high alert all the time; I have to be like that because ordinary movement doesn’t work automatically for me. As I get older, the effort required increases and there is wear and tear in my body too.

My energy works like a see-saw; I can make it to the top but I always come down again. Maybe that happens for everyone. A good morning for me highlighted just how my energy can fluctuate.

Strangely, Ciara Mageean, the Olympian and European champion, has been on my mind as I consider my energy. She was a woman with such fitness and prowess in her sport and yet died way too young.

We never know how many good days we have got, we never know who is wishing for the life that we have. I look forward to the next fresh morning.