Finding Balance with IgAN

If you asked someone who knows me well to describe me, they would probably say, "Ruchi is always on the go." And I was. I always had several things happening at once—running around, staying active, and rarely slowing down. My mom constantly told me to sit down and take a break, but I never felt that I needed to. I had so much energy, both physically and mentally.

When my IgAN energy began to change

Although I was diagnosed in 2001, I did not notice a significant change in my energy until about four or five years ago. I began to tire more easily, but I did not slow down. At first, the change was gradual. Then, two years ago, the fatigue became much more noticeable and difficult to ignore. I kept trying to push through as I always had, until I reached a point when I simply could not continue that way.

Changing my mindset about IgA Nephropathy fatigue

I needed to change my mindset and accept that my activity level would have to decrease. That was incredibly difficult. I felt guilty for being tired, for needing to rest, and for being unable to complete tasks that had once been easy. I worried that I was letting my friends and family down.

I knew I needed to find balance, but I did not know how. Then a fellow IgAN patient told me, "Give yourself grace." It was much easier said than done, but I began to forgive myself—for feeling tired, for not cooking dinner, and for resting instead of running errands. That was when my mindset started to change.

Understanding Spoon Theory as an IgAN patient

Spoon theory is a metaphor created by a person living with lupus who used spoons as units of energy to explain fatigue. Today, it is widely used by people living with chronic illness or disability.

In simple terms, every task costs a certain number of spoons. More demanding tasks use more spoons, although the cost is different for each person. Cooking, for example, may take a great deal of energy for me but much less for someone else. The challenge is that we begin each day with a limited number of spoons. If we use them too quickly, we may have little energy left—or may have to "borrow" from the next day.

A typical day with 12 spoons living with IgAN

Getting out of bed: 3 spoons—it is quite difficult for me.

Seeing two clients: 4 spoons.

Making dinner: 3 spoons.

After those activities, I have only two spoons left. I must then decide carefully how to use the rest of my day. If I nap or rest, I may regain a couple of spoons. If I push through and take on more tasks, I risk running out entirely.

I have learned to look ahead and decide what I can realistically accomplish without completely depleting my energy. I also recognize that I am fortunate to be able to adjust my routine according to my energy level; not everyone has that flexibility.

Giving myself grace as my IgA Nephropathy progresses

I know that as my kidney function declines, I may have fewer spoons and use them more quickly. For now, I am working to balance daily responsibilities with the energy I have—and to give myself grace when I cannot do everything.