{"id":10392,"date":"2023-05-11T18:56:40","date_gmt":"2023-05-11T23:56:40","guid":{"rendered":"https:\/\/www.patheos.com\/blogs\/jenniferfitz\/?p=10392"},"modified":"2023-10-05T14:13:56","modified_gmt":"2023-10-05T19:13:56","slug":"how-do-you-exercise-when-you-have-a-serious-chronic-illness","status":"publish","type":"post","link":"https:\/\/www.patheos.com\/blogs\/jenniferfitz\/2023\/05\/how-do-you-exercise-when-you-have-a-serious-chronic-illness\/","title":{"rendered":"How Do You Exercise When You Have a Serious Chronic Illness?"},"content":{"rendered":"\n<\/head>

My friend Emily DeArdo<\/a> and I have a fitness club. It meets via text message, and it involves reporting in how we\u2019re doing and how our day went, and congratulating each other for making good decisions where our health is concerned.<\/p>\n

And here\u2019s the thing: Emily is the girl who has kept me going on exercise, and not giving up, when it was extremely difficult to believe that it mattered.<\/p>\n

When you have a chronic illness, exercising is really hard. There are lots of obstacles, situations where you just\u00a0can\u2019t<\/em>, and you don\u2019t get the amazing results that other people get. Last autumn I needed to hear from Emily: \u201cYes, my training at the gym<\/a> is working. I am gaining strength and endurance.\u201d<\/p>\n

I needed to hear it because if Emily DeArdo can get improvements at the gym? You probably can too.<\/p>\n

I held onto that all this fall when I was laid out flat with the latest exacerbation of my (much different) illness. I wanted to be working out, and I just couldn\u2019t. The best I could do (see below) is identify a sustainable step count and aim for that (with just essentials of self-care and time with the family), and accept that it would take a lot of rest and strategizing even to function at the minimal sustainable level.<\/p>\n

But it paid off! Eventually the exacerbation cleared up, and that discipline I\u2019d developed let me hit the ground running (literally, within a few weeks, though it was mostly walking at first, see below about that, too) and get back on the training plan.<\/p>\n

So today I want to talk about the reality of exercise when you have a chronic illness that significantly hampers your ability to exercise.<\/p>\n

<\/a>

This is the Memento Mori t-shirt I commissioned off my daughter last fall. I talk about it here<\/a>. Artwork by A. Fitz, photo by me.<\/figcaption><\/figure>\n\nUpdated: A word about ME before we continue . . .<\/span><\/h3>\n

I\u2019m reminded on World ME Awareness Day that for the disorders in the myalgic encephalomyelitis \/ chronic fatigue syndrome constellation, including the form of post-COVID syndrome<\/a> that falls into that grouping, post-exertional malaise<\/a> is the extremely serious, defining pathology, and it directly inhibits your ability to increase your amount of exercise, because it is specifically a disorder of exercise-recovery.\u00a0<\/span><\/p>\n

So when I warn about \u201cdon\u2019t wreck yourself\u201d below? If you have ME\/CFS, that warning is a flaming volcano and you need next-level caution, because the downside is much, much greater than average, even in sick-people world.\u00a0<\/span><\/p>\n

\u2013> I would advise here that if you have a new-onset illness characterized primarily by fatigue, act as if it\u2019s ME until you are certain it\u2019s not. Don\u2019t do the ramping up. Do the part where you dial back and rest enough. If it\u2019s not ME\/CFS, it\u2019ll become clear with time. (And, you\u2019re going to your doctor and running all the test to see if it\u2019s something easy to diagnose or urgent to treat, right?)<\/span><\/p>\n

And for everyone, seriously: You need to learn about the unique features of your disease and know what the specific hazards are that you have to caution against. What follows are some general concepts, but liver disease is different from heart disease is different from lung disease . . . and so on. Your have to add in your personal factors and adapt accordingly.<\/span><\/p>\n

Now carrying on with the previously-published post . . .<\/span><\/p>\n

\n
Exercise matters.<\/h3>\n

Dr. Howard Luks<\/a> is on my priority-follows list on Twitter, one of the handful of people I\u2019ve picked to be my positive brain-break when I just want to chill and be inspired. (Emily\u2019s<\/a> there, so is John Herreid<\/a> with all his great art posts . . . it\u2019s a variety of interesting people who make my day better with what they say.)<\/p>\n

I don\u2019t know Dr. Luks and I haven\u2019t read his book. What I know is that his blog and his tweets contain lots of good, important information about why exercise matters:<\/p>\n

\nLeg strength is important for health and longevity.<\/a><\/li>\nSarcopenia is the enemy: Muscle Mass, Strength and Longevity<\/a><\/li>\nPhysical fitness protects your brain, too: Delaying Alzheimer\u2019s Disease and Neurocognitive Decline: Let\u2019s Stay Active Longer<\/a><\/li>\n<\/ul>\n***
** I need these reminders, so I keep a flow of them in my life. If you are not working hard to build and maintain muscle mass, mobility, and aerobic conditioning? You\u2019re in trouble.<\/p>\n
** ***But if you have a serious chronic illness, you probably feel like all this is impossible. You\u2019re not alone.<\/p>\n

The fitness world doesn\u2019t know what to do with sick people.<\/h3>\n*****
** *****That includes doctors.\u00a0 Here\u2019s Dr. Luks at a loss about people like us. At the end of the tweet I\u2019m about to link, he writes:<\/p>\n

"

And yes, I do realize there are many people who are ill, disabled, disadvantaged, and otherwise cannot exercise, afford fresh produce etc\u2026 but I still think it\u2019s worth sharing this info with the rest of the population that this is worthy of consideration.<\/p><\/blockquote>\n*****
** But what he writes\u00a0is still true<\/em> even if you have an illness that hampers your ability to exercise:<\/p>\n
** https:\/\/twitter.com\/hjluks\/status\/1654825573439492096<\/p>\n
** It is still true that exercise is beneficial and\u00a0necessary<\/em> even though most fitness writers are athletes, and most exercise scientists are focused on peak human performance.<\/p>\n
** *****It is still true even though the usual standards for what you \u201cought to be able to do\u201d are absurdly out of reach for many people with chronic illness.<\/p>\n

Fitter is still better, even when your \u201cfitter\u201d is barely on the fitness radar.<\/h3>\n*******
** My favorite fitness bloggers and podcasters tend to be like \u201cOkay, for this problem, what you need to do is these many pull-ups, and . . .\u201d Um, okay. What if I have that problem,\u00a0but I can\u2019t do a pull-up<\/em>?<\/p>\n
** Well you know what, sick people? There are other exercises you can do if you can\u2019t do a pull-up. And you can do them fewer times, or with less resistance, or whatever it takes so that you are exercising\u00a0the amount that you can.<\/em><\/p>\n
** That\u2019s all you can do. But you\u00a0will<\/em> be healthier than you otherwise would be if you build that muscle mass, even if what you build is invisible to these fitness gurus.<\/p>\n
** So I\u2019m here to tell you: Come join the club of sick people who reap the benefits of exercise, even if no one else in the world thinks it\u2019s really happening.<\/p>\n
** And that\u2019s the rest of this post: How to get yourself into the mental space where you can do that, and how to approach your training plan when you can\u2019t just follow some recommended workout created for regular people.<\/p>\n
** *******Let\u2019s start with the mental game.<\/p>\n

You have to prioritize stewardship of your health.<\/h3>\n*******
** This is really hard, because everybody around you wants stuff out of you. Even if you were a regular person, you could not give everybody that piece of you they\u2019re trying to take.<\/p>\n
** When you are a sick person, you have to be much more intense about setting boundaries.\u00a0 Everyone\u2019s going to be playing the game of \u201cIf she can do that, why can\u2019t she _______?\u201d<\/p>\n
** The answer is: She can\u2019t do the lower priority item\u00a0because she chose to do the more important thing.<\/em><\/p>\n
** *******So you have to get to a place where you recognize: Taking care of my body is\u00a0more important<\/em> than other stuff people want from me, because if I don\u2019t take care of it right now as a high priority, I\u2019m going to be even sicker or deader down the road, and then who are they gonna whine to?<\/p>\n

It really sucks having to make these trade-offs.<\/h3>\n*******
** It\u2019s a lose-lose life you\u2019re living. No matter what you prioritize,\u00a0you will have to give up some extremely important things.<\/em><\/p>\n
** Regular people are like, \u201cI prioritize things like family, friends, quiet moments savoring the sunset . . . you just have to focus on what really matters in life.\u201d<\/p>\n
** Sick people are like: \u201cYeah, I have to choose whether to talk to my kid for five minutes today or brush my teeth. Maybe I can do two minutes with the kid and some mouthwash.\u201d<\/p>\n
** Even if you\u2019re not that sick right now? You have to get very far into regular-people territory for a long time<\/em> before you\u2019re going to be able to do all the basic things that matter most.<\/p>\n
** *******Until then, you\u2019re going to constantly be having to thicken your skin and accept that the life you actually have is one where you have to say no to things \u2014 people, mostly \u2014 that you truly treasure.<\/p>\n

This is why it is so hard to exercise enough when you have a chronic illness.<\/h3>\n*******
** It takes ruthless determination to not make that phone call to someone you love so that you can go to the gym instead. But you, unfortunately, have to choose. And if you don\u2019t choose the gym today, there will be no phone call tomorrow.<\/p>\n
** *******We\u2019re not talking about you putting your Olympic dreams above close family and friends. We are talking about the fact that if you don\u2019t get very, very serious about your physical training\u00a0you will be dead sooner. <\/em>And then the people who joke about how you\u2019re so hard to get on the phone will really know what \u201chard to reach\u201d is like.<\/p>\n

When you can, train as hard as you can reasonably, safely sustain.<\/h3>\n

Different illnesses take on different contours. My friend Emily, a double-lung transplant recipient<\/a> with cystic fibrosis, has a fairly stable situation overall, punctuated by bouts with infections or other setbacks that require rest and recovery.<\/p>\n

In contrast, I have a relapsing-and-remitting illness. When I am seriously sick, Emily\u2019s normal runs circles around me. But when I\u2019m not in a sick phase, I can do way more than she can.\u00a0 Your situation is probably yet different from either of us.<\/p>\n

Regardless, there are likely times when you can do relatively more, and times when you really can\u2019t.<\/p>\n

During those times when can do more, physically, there are going to be many, many things you are going to want to catch up on. During those times, though, you need to be banking physical fitness.<\/p>\n

Fitness-banking is a thing.<\/h3>\n***********
* You need as much muscle mass as you can get. You need as much aerobic conditioning as you can get. You need as much strength, balance, and mobility as you can get.<\/p>\n
* When you are more-sick, some deconditioning is going to occur. You can\u2019t help that or change that.<\/p>\n
* What you\u00a0can<\/em> control is your starting point. If you lose 10% of your muscle mass while you\u2019re down with a bad bout of the thing, yeah that sucks \u2014 but it sucks way more if you didn\u2019t have much to begin with.\u00a0 Which means that\u00a0when you can*<\/strong>,<\/em> you need to hyper-focus on strength training, even though it means missing out on other stuff.<\/p>\n*
** ************You can\u2019t always.<\/strong><\/p>\n

Everyone dies in the end.<\/h3>\n***********
** It is really discouraging when you have to put so much work and discipline and self-denial into fitness training, and you still look and feel like a lump.\u00a0 It\u2019s not fair that other people get to keep their fitness gains, because they don\u2019t have bouts of some stupid illness. It\u2019s not fair that other people can train more intensely with bigger results and far less sacrifice, because they have normal bodies that can do that.<\/p>\n
** ***********Well, okay. You know what else is not fair? You cheating yourself out of being as healthy as you\u00a0can<\/em> be.<\/p>\n

Exercise is always, for everybody, a temporary game. No one escapes death forever. No one stays perfectly healthy forever, no matter how amazing their health-and-wellness game.\u00a0 But guys, everyone gets the same amount of eternity<\/a>.<\/p>\n

What you\u2019re deciding with how you exercise isn\u2019t whether you will one day be sicker and later be deader. What you are deciding is: Will I be as healthy right now as I can be? And will I be as healthy as I can be for as long as I can be?<\/p>\n

Exercising isn\u2019t selfish.<\/h3>\n***************
** This is a huge mental shift you have to make.<\/p>\n
** You think, \u201cOh I\u2019m so humble with putting others first, and not being vain about my appearance, and being so accepting of my difficult lot in life.\u201d Okay that\u2019s fine as far as it goes.<\/p>\n
** But also, if you don\u2019t do what you reasonably can to take care of the body that has been given to you \u2014 even if it\u2019s a bit of a clunker \u2014 then you are being selfish. You are making the decision to have less time and less ability to be with others and to serve others.<\/p>\n
** The point of serious fitness training for sick people isn\u2019t that we\u2019re going to impress anyone. We aren\u2019t. Sorry. The point is\u00a0to be there for others<\/em> as well as you can.\u00a0 And fitness\u00a0makes a huge difference<\/em> in the course of your disease (yes, it does!).<\/p>\n
** There are no guarantees, of course. If you knew exactly when and how you would die, you could carefully steward all but the last ten days, and then binge on Krispy Kreme with your besties and go out in style.<\/p>\n
** That is not reality. Reality is that you need to invest in your physical health as if you aren\u2019t<\/em> going to get hit by a bus tomorrow morning. Your responsibility isn\u2019t to control what you can\u2019t control and can\u2019t know. Your responsibility is to consider the fact that you might not<\/em> get hit by a bus tomorrow, and prepare for\u00a0that.<\/em><\/p>\n
** Okay, so what does that look like?<\/p>\n
** Let\u2019s start with reality when you\u2019re super sick and honestly you can\u2019t do much at all.<\/p>\n
** When you can only do very, very little, prioritize:<\/h3>\n
** Non-negotiable medical care.\u00a0<\/strong>Let\u2019s be real: Little things like taking your medicine you\u2019ll get seriously sick (or sicker) without, checking your blood sugar if you have diabetes, monitoring your blood pressure if you have hypertension . . . these require physical energy. Depending on your health condition, you probably have some true do-or-die interventions. Do those.<\/p>\n
** Put lower on the list things that might-be-nice but honestly aren\u2019t personally major risk factors for you.<\/p>\n
** True do-or-die chores.\u00a0<\/strong>Maybe the garbage really has to go out today, because otherwise you have a serious sanitary situation on your hands. Okay, take it out. Or maybe you can tie up that bag and set it aside and someone else can take it out later, and that\u2019s not your first choice but it\u2019s FINE.<\/p>\n
** Your energy goes first to the things that really, truly must be done. If it can wait, it gets downvoted on the priority list.<\/p>\n
** Rehabbing your biggest vulnerabilities.<\/strong> Those exercises that help your bad knee, or balance training because honestly you need it, or stretches to keep the back pain down to a minimum . . . whatever it is. You know what your things are. If you can only do twenty-five seconds of exercise today, do the exercise that will shore up, even just a tiny bit, the thing that otherwise is gonna wreck you.<\/p>\n
** Prioritize this over low-urgency chores. You\u2019re gonna have a lot harder time getting laundry done if you let your back go out again.<\/p>\n
** Sticking to a sustainable daily level of exertion.\u00a0<\/strong>Maybe \u201csustainable\u201d is:<\/p>\n
** \n\u201cI am going to eat today and also go to the toilet and frankly if I do those two we\u2019re calling it a victory.\u201d<\/li>\nOr: \u201cI can do up to 2,000 steps a day, and if I obsessively stay under that ceiling, I can reliably do it again tomorrow and the day after.\u201d<\/li>\nOr: \u201cI will do the top thing on my list (um, those meds?), and then rest. When I feel energetic again, I will do my #2 priority (food? toilet?).\u201d And you slowly turtle your way through the day, and it works for you.<\/li>\n<\/ul>\n
** And that\u2019s it. Stick to\u00a0sustainable.<\/em><\/p>\n
** The thing you are missing is that\u00a0regular people are not living at their maximum capacity.<\/strong><\/p>\n
** Even professional athletes aren\u2019t pushing themselves so hard that they literally, really truly could not brush their teeth at the end of the day if they added one more thing. They just go run the Ironman and then they\u2019re like, \u201cYeah I can also brush my teeth today I have so much extra energy even after doing that.\u201d<\/p>\n
** Sick people are on a different plan. Your daily\u00a0sustainable<\/em> energy output\u00a0is<\/em> intensive training.\u00a0 The discipline of sticking to what you can\u00a0sustain<\/em> will pay back so, so much.<\/p>\n
** Err on the Side of Being a Little Too Careful<\/h3>\n
** So you think you can probably do 2000 steps a day? Yeah let\u2019s see 1500 for a week and then we\u2019ll talk.<\/p>\n
** Exercise guide suggests starting with five pound weights? We\u2019re starting with\u00a0zero<\/em> weights, and if that works we\u2019ll up it to a pound.\u00a0 Three sets of ten? Nope, one set of three. 90 degree angle on that new stretch? Okay well we\u2019re starting with 45 and we will see from there.<\/p>\n
** See, the thing is: You can always add more<\/em>.\u00a0You cannot undo an injury.<\/strong><\/p>\n
** If you wreck yourself, it is going to cost you much, much more than it will cost a regular person.<\/p>\n
** When everything goes fine with your initial, super-cautious approach? Great. Increase the intensity\u00a0a tiny bit<\/em> and see how it goes. If it\u2019s still fine, sure, inch it up another notch.<\/p>\n
** If you do this, eventually you will\u00a0safely<\/em> get to your sustainable max. Sure, it is slower progress than if you had somehow magically known exactly what you could do before you even tried. But this isn\u2019t fairyland, and also you know what slows down your progress? Getting injured.<\/p>\n
** Intensify when you can, and don\u2019t dilly dally about it.<\/h3>\n
** When you are feeling relatively better, here is what you are going to want<\/em> to do:<\/p>\n
** \nGet out and tackle that huge, physically intense project that really needs to be done, even though you are deconditioned from being so sick and it\u2019s probably going to wreck you.<\/li>\nTackle a million little things that you are so behind on that if you did nothing but chores for the next six years, maybe you could catch up.<\/li>\nSpend time with people and get back to all your old activities.<\/li>\nEat donuts. Hurray, you\u2019re better!<\/li>\n<\/ul>\n
** Here is what you have to do instead:<\/p>\n
** \nSlowly,\u00a0carefully<\/em>, ramp back up your conditioning program, and wait<\/em> on physically intense chores until you have built back up the strength to do them safely.<\/li>\nWork through only the highest priority backlog of chores first. Yes, you need to get the IRS off your back. Immediately. No, you don\u2019t have to clean out right now<\/em> that closet that frankly someone else can deal with if it comes to it, it\u2019ll keep until later.<\/li>\nContinue thinking carefully about your priorities. Who are the people who truly have a claim on you above all others? What are the activities that contribute most to your mental health, even if they seem gratuitous or \u201cwasteful\u201d to other people who are not you?<\/li>\nSlowly but\u00a0seriously<\/em> ramp back up on your conditioning program.<\/li>\n<\/ul>\n
** \u2013> I\u2019ll note, however, that chores are<\/em> exercise.\u00a0 They just aren\u2019t always the right kinds of exercise in the right proportions. The key is they need to be the exercise that fits into your conditioning plan. Don\u2019t sort the odd sock basket instead of completing the strength training workout you would otherwise be ready to do. But if your fitness plan legit calls for a short, light walk, it\u2019s okay if your house is cleaner at the end of that walk.<\/p>\n
** And then here is what you need to do next, if you keep being pretty healthy overall, for you:<\/p>\n
** \nContinue slowly but seriously ramping up on the conditioning program, even if you are back to where you were before.<\/em><\/li>\n<\/ul>\n
** Even if you get to where you\u2019re in pretty good shape for someone your age? Even if you are fitter than you\u2019ve ever been? Keep going.<\/p>\n
** You are not a regular person.\u00a0 You have to bank your fitness while you can, and bank as much as you can, because when you get sicker again, you are going to need that reserve.<\/p>\n
** Keep exploring until you find the kind of exercise that works with the body you have today.<\/h3>\n
** What I do for exercise is constantly changing because my body is constantly changing.<\/p>\n
** I love the outdoors. I like yardwork, hiking, camping, biking . . . all kinds of outside activities. Also, I live in the Deep South. Before I developed an illness that is made worse by heat exposure? I was the queen of heat adaptation.\u00a0 A little insufferable about it, ask anyone.<\/p>\n
** I was good<\/em> at exercising in the heat. I was dying laughing back during the Atlanta Olympics when there were all these articles about athletes having to deal with heat and humidity, oh my. Poor babies.<\/p>\n
** Well, that was before. And I do still work the heat-adapting as much as I can? But also I finally realized I needed to find options for exercise during the hot-season that were compatible with the body I have today.<\/p>\n
** Maybe one day, because I\u00a0do<\/em> keep working on the heat-adapting within my capacity for that, I\u2019ll be able to get more summer outside-time. For now, ice skating it is. You could do a lot worse.<\/p>\n
** You have to become the expert in adapting recommendations.<\/h3>\n
** The other day Emily was talking about the value of wall sits, and I balked. They don\u2019t go well for me. And somewhere in that conversation came the aha-moment: I don\u2019t have to go into a\u00a0deep<\/em> wall sit. There is still strength-training happening even if I\u2019m sitting at a much shallower angle.<\/p>\n
** The thing is: Only\u00a0I<\/em> can know what that angle is.<\/p>\n
** A physical therapist can\u2019t feel my knee creaking, even if she\u2019s watching carefully for all the right body mechanics. A fitness guru on the internet can\u2019t write up a special version of his go-to workout Just for Jennifer. A doctor making general recommendations about \u201cgetting more exercise\u201d is not living my daily life.<\/p>\n
** So I have to be the leader. I have to be the one who pays careful attention to my body and makes smart decisions about what I can and can\u2019t do.<\/p>\n
** And the same goes for you. Become the leader in making the final judgement call on what you can do and how much you can do.<\/p>\n
** When you do that, exercise becomes\u00a0good.<\/em><\/p>\n
** \u00a0<\/p>\n<\/body><\/html>\n","protected":false},"excerpt":{"rendered":"
** ***************My friend Emily DeArdo and I have a fitness club. It meets via text message, and it involves reporting in how we\u2019re doing and how our day went, and congratulating each other for making good decisions where our health is concerned. And here\u2019s the thing: Emily is the girl who has kept me going on […]<\/p>\n","protected":false},"author":1209,"featured_media":10395,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[205,216,6],"tags":[322,846,206,843,840],"class_list":["post-10392","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-disability-chronic-illness","category-its-all-catholic","category-stick-that-corner","tag-chronic-illness","tag-disability","tag-exercise","tag-longevity","tag-physical-therapy"],"yoast_head":"\nHow Do You Exercise When You Have a Serious Chronic Illness?<\/title>\n<meta name=\"description\" content=\"Let's talk about the reality of exercising when you have a serious chronic illness. 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