New Normal – New Approach
Having a diagnosis of a chronic illness is hard to accept. Especially when you’ve been hoping to lifestyle-your-way out of your symptoms and it hasn’t worked. Does that mean you should abandon trying to live a healthy lifestyle? Of course not, but you do have to adjust what you do to fit your new reality. Exercise and chronic disease can still co-exist.
The Hard Stuff
First, let’s talk about how exercise is just plain harder when you have a chronic illness like Sjogren’s Syndrome.
Sjogren’s Syndrome, Arthritis, Fibromyalgia, all that stuff. One of the very things (pain) that gets in the way of exercise can be relieved by doing the thing that’s so hard to do. Once you get yourself going, even just a wee-little bit, you will start to discover how effective moving more can be for reducing your pain symptoms. Getting yourself going is the hard part, but with the right goals, it’s totally doable.
This is the tough one for many. So many doctors poo-poo the complaint of fatigue, and the accepted reasoning is that you’re too tired to exercise because you’re out of shape. Plenty of athletes can attest to the inaccuracy of that. Your mood will improve, body may feel good, but that fog of fatigue lingers.
A few years ago, multiple Federal Agencies charged an expert committee to review evidence about chronic fatigue and exercise, and make recommendations. Their findings are pointing to what many of us knew:
Making someone with genuine chronic fatigue exercise to build up endurance doesn’t work. Patient reports combined with recent research about our energy being depleted more quickly led CDC to revise their guidelines about exercising with chronic fatigue. This was after years of recommending vigorous exercise to combat the fatigue – which wasn’t working.
Unfortunately, the message about this is slow to get out to the medical community who provides treatment. Researchers are just starting to get it.
Don’t Give Up
You may be thinking “If exercising with a chronic disease makes me so tired, why would I want to do it?” Here’s why:
With many chronic illnesses, pain is almost always a given. Many autoimmune disorders fall into this category. People who exercise with chronic pain will tell you, regardless of how fatigued they are, joints and muscles feel better. When they stop moving, their shoulders, knees or hips remind them pretty quickly.
For real, folks. Regular activity not only improves mood during exercise, but it makes dealing with stress in general much easier. It’s a powerful coping strategy when the going gets tough. The bonus is that an improved mood all by itself can reduce the impact of chronic pain. It’s basically a twofer of benefits!
Yes, I know, “but I already have one, so I’ve already lost the fight”. No, you haven’t lost, and the last thing you need is another thing to deal with! Anyone in your family history with heart disease, cancer, dementia or stroke? Add that to chronic inflammation that comes with many chronic illnesses, and your risk is more than the average person’s. Let’s say “no thanks” to any more medical problems.
Chronic Disease and Exercise Can Co-Exist
To get the benefits of improved mood and reduced pain, it’s worth getting active despite fatigue. Realistically, though, you have to figure out how to do it without it backfiring. If you exercise Sjogren’s Syndrome or another autoimmune disorder, and go overboard, you might trigger a flare and feel worse than before.
So, it comes down to: How do you work on pain, but work with fatigue? Other people have figured out how to be active with illnesses, so it can be done. Therefore, it’s worth your time and effort to figure out how you can too.
Throw the old goals out the window. Embrace the idea of pacing yourself through the day now. It may be hard when you’re used to exercising till you feel like you really did something, but scaling back is in order. I won’t rehash what this website says, (it’s excellent – read it after you finish reading this) but it boils down to these things: rest between activities (don’t exercise for so long), stop before you feel like stopping, do less than you think you can, know your limits, and plan ahead for all that you’re going to do for the day. If you’re familiar with the spoon theory, that last one makes total sense.
One strategy I came across in researching for this, was focused on heart rate. This website recommends keeping your heart rate at 60% of your max heart rate (the upper limit of what your cardiovascular system can handle) when you exercise. Here’s how to calculate that: 220 minus your age = max heart rate. 60% of that number is your limit.
Here’s a handy download that breaks down heart rate training zones. Click the image to sign up and get a copy!
How to Keep Going
When you’re used to exercising to lose weight, it usually takes a while to reach your goal. That’s hard enough. But when you can’t push yourself to reach a goal like that, how do you keep going? I’m going to repeat something I always say:
Pay attention to all the little “wins” and payoffs. For example, is exercise time a good “escape” for you? Is it fun to do with a friend? Is it a chance to listen to your favorite music? Do you notice a small reduction in pain or improvement in mobility? Even just a little?
Keep track of what you’re doing and what you’re discovering:
- What feels good?
- What’s fun?
- What got in the way?
- What worked to get yourself going?
- What was too much for you?
Always remember a few things, too. Wear proper footwear, don’t forget to stretch, and listen to your body!
Looking for a really good way to develop your own plan? Here’s my system. Want to try this and have some support? Do it with a friend or group!