Living within My Means

When I moved to my own apartment after college (and during the many lessons beforehand), my parents always stressed to me that I needed to live within my financial means.

I needed to calculate my financial budget and live within what I earned, which meant being careful on what to spend on rent, groceries, and all the expenses of living independently.

Living within my means with RA

Recently, I’ve been thinking about how this concept also applies to living with rheumatoid arthritis (RA). If I stray outside my RA means, I pay the price with pain, exhaustion, and having to recover from overextending myself.

Unfortunately, it’s not always clear what my means are. By this, I’m saying that sometimes I think I am okay, only to discover later that I am not.

However, I generally do know what my RA limits are and can contemplate what it means to live within them.

Physical energy

On any given day, I only have so much energy and I know this.

On a good day, I have more and a bad day, a lot less. But on an average day, I know what to expect and have a good idea of what I can accomplish. For example, so many hours of work, so much exercise, and perhaps a social outing (or phone call).

Every day I can plan and balance things out. With more social time, I need to cut back on something else. If it is a big workday, then other things will be put on pause.

Pain

My pain can fluctuate a lot over a week or even throughout the day. I’d like to say that I’m getting better at getting ahead of pain, but I’m honestly not sure if that is really true.

Still, I do have the wisdom to realize that if I have a “big and important” day, then I may need to take some extra medication in advance or at strategic times to minimize my pain and maximize my energy.

It also really helps to have emergency medication on hand and with me wherever I am so that if I am suddenly feeling like I am going downhill , I can get some extra prednisone or pain medication into my system.

Living within my RA means definitely includes living within my pain tolerance. If I get into too much pain, then my energy quickly evaporates and I am swiftly in a place where I need to lay down and may not be able to do much more.

Physical abilities

In my case, my RA has very much curtailed my physical abilities and I live with significant disabilities.

I use a motorized wheelchair to help me get around, which really expands what I can do and minimizes my wasting energy on walking.

I also use other assistive devices, which really help me with a variety of tasks.

But I also need to be mindful there are things I cannot do (or cost way more energy than they are worth). For example, doing laundry is physically taxing and not worth the time and energy when I can get help.

It’s a calculation of what activities I can do (or need to do), balanced against what is most rewarding and where I can obtain (either favors, the hubby, or paying for) help.

Emotional and mental energy

Sometimes the emotional and mental toll of RA is the most taxing. I worry about how I’ll feel the next day or a day that I have important activities planned. I worry about how others will respond to my needs or limits. I worry about pain and the toll it takes on my body and energy. It’s always a lot to grapple with every day in the life of RA.

I’m trying to practice better energy management. Understanding my emotional and mental energy can also be challenging, but I still need to care for myself in this way. For me, it means more time alone or resting.

It can mean taking a nap when I need one, going to bed early, spending quality time with my husband (such as watching episodes of House Hunters), or meditating. But the emotional and mental energy bucket must be refilled.

On the flip side, I’m also being more careful on how and with whom I spend this energy. I realize I only have so much to give every day and I want to spend it well.

The unexpected

One cost of RA that is devilishly hard to manage is the unexpected.

For example, I woke up yesterday feeling great and had a wonderful day off filled with my favorite activities. It felt like a beautiful bonus day!

But then today, I woke up feeling okay then descended into feeling worse. I took extra medication and a long nap, but that’s not always feasible.

It seems, on any given day, I have to plan for the unexpected as it may add extra costs to my RA budget.

A reminder on being flexible

If RA brings a cost to every day, it can be challenging to budget for these.

We can plan on the usual, but sometimes there are extra charges that can throw us for a loop. As much as we try to live within our RA means, we’ve also got to remain flexible and know that some days may not be as successful as others.