I’ve been concerned lately. Here’s why.
In 2001, I got sick with what the doctors assumed was an acute viral infection, but I never recovered. I’m mostly housebound, often bedbound. My diagnosis is the little understood (but much misunderstood) myalgic encephalomyelitis, also known as chronic fatigue syndrome or ME/CFS. I describe it as “the flu without the fever.” This means that fatigue is only one of many symptoms I contend with every day. In addition, before I got sick, I suffered from a couple of other chronic conditions, such as painful interstitial cystitis (IC). If I’m in an IC flare, it exacerbates the symptoms of my ongoing ME/CFS.
I’m now almost 18 years older than when I became chronically ill in 2001. I’ve started to notice some bodily changes, and I can’t tell if they’re due to a worsening of my illness or if they’re a natural part of the aging process. I know from others in my situation that they face the same uncertainty.
Here are five dilemmas I’ve identified as issues I have to grapple with as I age with chronic pain and illness as my constant companions. (Note: Be sure to see your doctor about any changes you notice in your health or your day-to-day routine. This piece is not a substitute for that.)
1. Do the aches and pains that weren’t present a few years ago mean that my chronic illness is worsening or is this just a sign that my body is almost 18 years older? OR, is it a combination of the two?
There’s even a fourth possibility. Maybe the increased aches and pains are not due to my chronic illness worsening and are not due to my getting older but, instead, are due to the fact that I can’t do what we’re continually told we must do as we age: exercise, exercise, exercise.
Hardly a day goes by without my seeing a story about how exercise can help fend off the effects of aging. But I can only do the gentlest of exercises—and can only do them on a “good” day: some light resistance band work, some balancing exercises. Is the lack of rigorous exercise the reason why I’m feeling more aches and pains?
I wish I knew. One thing I do know: it can be emotionally stressful not to be able to do what every news story about aging is telling me I should be doing.
2. Does my increased need to rest mean that my chronic illness is worsening or is this something that happens to everyone as they age?
Several of my healthy friends who are retired have added an afternoon nap to their daily routine. That would indicate that the increased need to rest is due to aging. Yet I’m still not certain that it isn’t due to my illness. Which is it? I’m not sure. Maybe, after a certain age, an afternoon nap makes good sense for people who can fit it into their lives.
3. When I first got sick I still stayed up until 11 p.m. Then it became 10 p.m. Now I turn out the lights around 9:30 p.m. Is this a sign that my illness is worsening or is it just that I’m almost 18 years older than when I got sick?
For the past few years, I assumed that my bedtime getting earlier and earlier was a sign that my illness was causing me to be less functional in the evening. Then a healthy friend who’s my age told me that she often turns out the lights at 9 p.m. So, once again, I’m uncertain as to how to evaluate this change in my “lights out” schedule.
4. Since 2001, I’ve developed a few other age-related health issues that doctors want to treat with various medications. Should I take these medications even though they exacerbate the symptoms of my chronic illness?
One of those health issues was a bout with breast cancer four years ago. The oncologists want me to take a medication that reduces the risk of recurrence. That’s a great idea if it weren’t for the fact that the medication (and I’ve tried four of them) make my chronic illness so much worse.
Should I take the medication anyway and put up with being more sick and less functional? I struggle with this question every day.
A few years ago, I read an article by Carol Lefelt on “Health Rising: Finding Answers for ME/CFS and FM.” Ms. Lefelt had a bone density scan for osteoporosis. After reading the results, the doctors told her that if she didn’t go on one of two medications that slow down bone loss, she could wind up in a nursing home. To quote her: “But possible the side effects, described by the flashy brochures with pictures of radiant aging actresses, are distressing: flu-like symptoms, weakness. Thank you, I already have those.”
My bone density scan shows that I have osteopenia, which means I might develop osteoporosis as I age. What would I do if my doctor told me to go on one of these medications? I don’t know. On the one hand, I don’t want to add an increased risk of bones breaking to the delicate balance I already face navigating everyday tasks in life. On the other hand, like Carol Lefelt, I already suffer from flu-like symptoms and weakness. So that’s another dilemma I might face one day.
5. If I need to be hospitalized (something that’s more likely as I age), will the medical staff understand how crucial it is for me to stick to my nap/rest routine in order to avoid a flare in the symptoms of my chronic illness?
Will they understand how debilitating ME/CFS is? When I raised this with my primary care doctor, he told me to have the hospital contact him. But what if he’s not available? Or what if they ignore what he tells them? I know that many health care workers see “ME/CFS” as code for “It’s all in your head.” How do I know I won’t be put in the hands of someone who holds that opinion?
Aging when you’re already chronically ill raises a lot of questions without easy answers. What, then, should those of us in this situation do? Any time you’re concerned about a change in symptoms or in your day-to-day routine, gather as much information as you can from sources you trust and then talk to your doctor about it. If your doctor isn’t supportive, do everything you can to find another doctor.
As I’ve said many times before, being chronically ill is hard work. Sometimes it feels like a full-time job.
I wish everyone the best as we work through these challenges together.
Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers (Second Edition), How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow, and How to Live Well with Chronic Pain and Illness: A Mindful Guide. She can be reached at her self-titled site, Toni Bernhard.
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