Toughing it Out with Lupus

So, in case you haven’t read my bio, I live with my mother (if you’ve tried to rent in New York City on a disability paycheck, you know why). Despite having the spunk and vitality of a 20-year-old, lately her body has begun to feel its 60-plus years of wear and tear. She has a stress fracture and now is dealing with joint problems that inhibit her favorite activity, walking.

Now change is tough, especially adjusting to a new situation where you might not be able to carry on activities in the same way you used to. There’s a process to it, much like the stages of grief: namely, first you deny it, then you fight it, finally you exhaust yourself and reach some kind of compromise and get on with your life.

My Mom is straddling phases 1 and 2. The scenarios that have come up will be that she’ll start the day already having problems, but wanting to go out and “not give in” to her pain. So she’ll run out, do a million things, limp home in tons of pain and crash on the couch with a swollen knee for the next 5 hours. All because she felt that moderating her activities was the same as surrendering to her aching body.

I hear this a lot from both other lupus patients and non-lupus people who just want throw advice my way. They frown upon taking a day off, limiting activities, taking medications, or anything else that is less than having a “normal” life, because this implies, in some way, that you’ve surrendered to your illness and are letting it rule you.

In my humble opinion, that’s bullshit. Here are my reasons why:

What’s “normal” anyway? We are living in a world of robot people, life in shipping container homes, and amazing discoveries in space and in our own bodies – what archaic notion of normality are we clinging to? The standard nuclear family we now think of as “normal” once did not exist, and with less space and rising cost of living, it may go the way of the dodo once again. A lot of situations that we don’t even think about are but recent evolutions that have come about because as a society our resources and abilities have changed from what they used to be. Unfortunately, our ideas might take longer to catch up to the changes around us.

Your lifestyle should fit your needs – not the other way around. Just because 99% of the world is working 60 hours a week, doesn’t mean it might be the best plan for you. I think too often people fall into their lives because they’ve absorbed an idea of how their lives should be at any given time. At a certain age, you go to school. By this age, you marry. By this age, you have kids…and so on. But I always wonder how many people really take the time to stop and consider if that is what they really want. With lupus, you have prioritize a lot more than other people since you simply have less energy to go around. So if that job is really the last thing you want to do with your life, do you really need to pour all your time and energy into it? If you have a dream on the backburner, what are you waiting for? Look into it and see how feasible it is to make real. Examine what your core values are – and start finding ways to live them, right now.

You can’t fight your body. Your body is not frivolous or petty; if it’s sending you pain signals, it’s because there is a problem. Don’t ignore the signals your body sends. Now, this is easier said than done, especially for us lupies. I literally have some kind of pain every single day, but obviously running to doctor or ER is just not practical (or affordable) in that situation. This is where tools such as your medical record and simply knowing your body come in. Over time, you’ll get to know which signals are typical ones that can be taken care of on your own, and which need further testing or treatment. Regular check-ups with your doctor are important for this as well and a good doctor will help you know how to understand your blood work and what levels are “normal” for your condition.

Is it really worth it? In the end, what do you gain by stubbornly “toughing it out”? For my mom, it doesn’t look like a great trade-off; the extra pain and effort of pushing herself translates into added stress when things don’t go smoothly (such as a late bus or a detour leading to more walking than she thought) and takes away any fun she might have been having. Then she’s too tired at night to do anything else and frustrated by her day. She gets down on herself for “failing” to do all the things she’s planned. The thing is, most of these things are simple errands that could easily wait an extra day or even a week to get done. Is the frustration and stress really worth whatever little activity you’re trying to accomplish?

On the Other Hand…

I’ll be the first to admit that there are times where I get spooked by an activity and bail out prematurely. I could be feeling great – but then get all caught up in how I might feel later. And usually, my brain starts with the absolute worst-case scenarios instead of thinking logically. It happens and it can be tricky to catch yourself. It might simply feel safer and easier to sit out from activities then to stress over whether or not you can or should participate, even if you’re feeling well.

Nobody can really tell you where to draw the line, because the line is different every day, for every person. But, there are always a good few guides to help you along, such as taking baby steps, smart planning (healthy snacks and water are great ways to keep your body fueled on the go) and taking extra-good care of yourself during off hours are all good common-sense steps to take.

And finally, don’t beat yourself up if you feel like you chickened out of an event when you were feeling somewhat okay. Life isn’t a test, where you’ll get points removed for not pushing yourself in every situation. And, seriously, it just sounds silly to get all worked up because you only got 10 chores done instead of 46.

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