I can spend the week looking forward to something, hoping my energy will hold up, only to wake up on the day and realise I can’t manage it. Then I have to decide what to change, what to leave and who I need to let know.
After 18 years with Systemic Lupus Erythematosus (SLE), I’m better at making those decisions than I used to be. That doesn’t mean I’m always happy about them.
These are some of the things that help me when the day doesn’t go to plan.
I’m learning when to stop
In the first three months after my diagnosis, I completed three mini-triathlons. I was determined to prove that lupus wasn’t going to change my life. After the third race, I spent three months recovering.
I wanted to carry on as before, but my body couldn’t keep up with what I was asking of it. Learning to recognise my limits—and actually respect them—took much longer.
These days, I try to pace myself and rest when I need to. I still have moments when I think I should just finish one more thing. I’m learning to leave it, even when that feels frustrating.
I change what I can
If I can’t manage a night out, I might suggest a quiet movie night on the couch. If that feels like too much as well, I cancel and rest.
At home, I try to choose one small job rather than look at everything that needs doing. Some days I get that job done. Other days, it waits.
Having another option helps, but I don’t always need a replacement plan. Sometimes I need less to do, full stop.
I try to say how I’m actually feeling
I spent years trying not to look sick. I thought that if I looked healthy, I might feel that way too. But keeping up appearances made it harder for the people around me to understand what was happening.
Now I try to explain it in words that feel natural to me: “My joints feel like they need a good dose of grease today,” or “I’m not running on all cylinders.”
I also try to say what that means for the day—whether I need help, a quieter plan or some time to rest. It gives the people who care about me more to go on than “I’m fine.”
I let some things stay unfinished
Sometimes having a shower is enough. Sometimes I use a heat pack for comfort and leave the dishes in the sink.
In 2014, I spent four weeks in hospital with heart failure and complications involving my liver, kidneys and blood. Afterwards, my health needed more room in my life than I’d been giving it.
I’m still adjusting to that. I don’t always find it easy to leave things undone, but finishing the housework doesn’t have to be how I decide whether I’ve had a worthwhile day.
I make room for things I enjoy
Writing this blog and connecting with other Lupies gives me something I care about, even when I can’t do much physically. Sometimes I enjoy a quiet moment at home. Other days, I’m simply fed up. I don’t need to find a positive in every difficult day.
I can adapt and still feel disappointed
A quiet night on the couch might be what I need, but I can still wish I’d been able to go out. Changing the plan doesn’t make the disappointment disappear.
I’m learning to let both be true: I can make a sensible decision for my body and feel upset about having to make it.
Some days I adjust quite easily. Other days, cancelling again really gets to me. After 18 years, I’m better at working out what I need, but I still wish I didn’t have to think about it so much.
What helps you when you have to change plans? Do you prefer a quieter alternative, or do you sometimes need to leave the day clear?