I have noticed a bit of a pattern in how I respond to the ups and downs of living with RA. When I have pain and fatigue, I can feel overwhelmed and want to stop everything. Then when I feel better, I want to ‘make up for it’ and cram my week full with seeing people, getting jobs done and generally being productive.
But after a challenging few weeks I’m realising there might be a better way to handle my diary – I need to pace myself, in good times as well as tricky patches.
One of the more subtle pains of chronic illness is the guilt it can cause. I find I worry about what I ‘ought to’ be doing. Is it OK to save my energy and go to a party or see a friend at the expense of a church meeting or getting the housework done?
I recently went on a brilliant course called Intentional Health. One of the sessions that I found very helpful looked at how we decide what we do with our time. It emphasised the importance of making and protecting time and space to do the things that give us life – whether that’s running, sewing, gardening, writing. These things are vital as they give us a chance to recuperate and refocus. When we are feeling relaxed rather than stressed, we are more able to give our best selves to our families and those around us.
For me, writing and craft have that releasing power. I know that when I spend dedicated time on them, I have such a sense of peace and fulfilment and this certainly affects my children and those around me. I am much more patient with Tiny and Small as my head is not feeling cluttered and pressured. I find I actually listen to my children and want to spend time doing activities with them, rather than hoping I can get jobs done while they entertain themselves.
So how does this relate to pacing myself? In all of life, I know it’s not OK to be governed by a guilty feeling that I ought to be doing or achieving more. So I can look at my diary and decide that one major event a day is enough for me at the moment, whether I feel run down or not.
Obviously I need to be flexible to fit more in when it works, but I am deciding that guilt and obligation will not be the deciding factors. Although I really struggle not to feel bad when I say ‘no’, I can trust God that He will show me what is right to do. I am also reserving dedicated time to write and make things – just a few hours a week.
It’s a bit of an experiment really; I want to see if my health is more steady when I take a more measured approach. The days of full sprint or lying down are over. This journey is a marathon!