exercising while chronically ill
I can’t speak for other chronically ill people, just myself, of course, but I wanted to share a bit of how I manage my exercise.
For starters, I used to not ever be able to jog uninterrupted for more than 20 seconds or so, all my life. Everything hurt a lot, and instead of being able to do more each time, I could only do less and less each day. It was like my body wasn’t recovering between exercise sessions at all, and I’d hardly build muscle and would also very quickly lose it. My ankles were hurtful and swollen, my achilles tendon was inflamed, my hip and back hurt, and so on. Since being diagnosed and in treatment, I’m finally able to build muscle with a lot less pain (or basically none) and I can see progress in how long I am able to jog because I’m actually building stamina instead of hitting a wall and getting worse each time.
I initially started out just walking on the treadmill for an hour last year during the rare times I felt good enough to do so, especially after treatment began last October. It was important for me to do it this way because I was in bed and sick for most of that year; walking outside had the potential to leave me stranded somewhere in a forest, exhausted and in pain. At the gym, I was in a more controlled environment, deciding the intensity, and could stop and sit/lie down anytime and also receive help from staff or get picked up to go home. So I focused on building up the stamina to even just walk for an hour. Soon, I also incorporated inclines.
For the first 3 months or so, it was really hard because I ended up in lots of pain after. I basically waddled out of the gym like a penguin, and cringed in pain as I stepped down the stairs to exit the gym. For anyone that knows any sort of arthritis and similar conditions, you probably also know that it gets worse after rest, so you can guess what happened when I got up from bed after a gym visit. But it got better, slowly, and I started walking in the forest a few times too, even blogging about that time I walked 13km and promptly felt like death the next few days.
Then I started feeling well enough to start running on the treadmill for a bit; short bursts of 8.2km/h usually. First for half a minute, then 1 minute, then 2 minutes, always alternating between walking and running every few minutes. A little while ago, I shifted to jogging instead, as slow as 5.5km/h (the tempo I usually walk on the treadmill as well). I wanted to build some stamina instead to slowly work up to being able to jog uninterrupted for longer and longer until I could maybe do 5km without any break, and then work on becoming faster. I initially could only do 3 minutes, then 5, then 7.
Unfortunately due to time issues, period, more disease activity etc. I sometimes can’t make it to the gym for 2 weeks. I’m so used to instantly losing all progress I make that I always assume I’ll have to start from scratch again, but each time these breaks happen, I’m pleasantly surprised. I come back stronger instead.
Recently, after my best being 7 minutes uninterrupted jogging on the treadmill, I came back after a 2 week break of mostly lounging around in bed or on the sofa and could jog for 20 minutes straight. Absolute banger! Especially because I dreamed about being able to effortlessly jog for 20 minutes a few days prior to that and woke up sad that it wasn’t real. I actually dreamed about running again after that, and again, managed to top myself by first jogging for 20 minutes and after a short walking break, jogged 15 minutes more. It’s great. Today I only managed 10 and 5 minutes separately, but that’s okay; it’s late in my cycle and I had bad sleep the past few days. I focused on fast walking and inclines instead.
There’s lots of fitness advice out there and this pervasive idea of keeping up streaks all the time. Consistency seems to mean to do something daily in the eyes of these gurus and influencers, and even my smartwatch. I can’t judge if it’s bullshit for others too, but it’s certainly bullshit for me with cardio. My body simply needs rest, and it probably needs more than other bodies. I have now accepted that. My 2 week breaks aren’t a failure at all.
Same with these people who do fasted workouts and think it’s superior, more dedicated or whatever… I did that for a while because I prefer not to eat in the morning, but then one time I went after eating a bagel and it was awesome. I’m sorry, but I just need that extra energy! After that bagel workout, I noticed how wrong fasted cardio feels in comparison.
When I don’t need gym equipment (and I only use their treadmill), I stay at home and prefer to work out in the evening. I have a walking pad/treadmill mix (I just call it a walking pad though) that can go up to 12km/h but has no incline option, and I have a spinning bike. I never run on the pad because I don’t want to subject my downstairs neighbors to this, so it’s just for walking.
Having these options at home is great for when I feel too bad to make it to the gym, for spontaneous stuff, and outside of the limited gym opening times. I can get at least some exercise in without getting dressed properly and walking to the gym for 20 minutes. I think this is definitely a need as a chronically ill person, otherwise the hurdles to work out are too high on some days.
I usually read or watch videos on the pad, and I play on my Steam Deck via controller in front of the TV while on the bike. It’s easier for me to take a usually sedentary activity and do something easy like walking or biking during it.
For pilates and yoga, it depends; sometimes I put classes on the TV, but usually by now I have my own routine and do it while watching videos or TV series. Lately, it’s been Sex and the City.
I’ve had to accept that I’m not as mobile and bendy. Never have been, even as a child, and only got worse with age and disease. I forgive myself for not being able to copy certain moves from an instructor exactly, or being unable to hold some pose for long; stretching and working the right muscles is what counts, and even trying in the first place. Some stuff just hurts for me or I need to build up to it.
I also have to make sure to do yoga every day if possible. Not just a few quick stretches while standing between desk work, but full on mat on the floor, 20 minutes. Whenever I drop this habit, I notice a lot more pain and ironically, restarting it makes my spine hurt quite a bit more for the first few times before it finally helps. Right now, I’m in this restart phase again and it sucks.
I also occasionally suffer from exercise headaches, and I’ve made sure to ramp up the exercise more slowly, drink lots, relax my shoulders and look straight ahead instead of down. That already helps, and I also use a foam spine roller for the tension that sometimes builds up in my thoracic area from jogging, which otherwise adds to the headaches. The thoracic vertebrae are currently most actively affected by my AS; it used to be my lumbar area in the past, especially as a teen, so that is extra stiff after all those years.
Today is injection day (I have to inject medication every 2 weeks) and I always notice a drop in performance around that time. Maybe a mix of the effects running low by that point, and the body processing the new injection. I usually inject on Fridays, so I give myself some grace Thursday to Saturday. If I exercise at all on an injection day, I do it before the injection, because I’m usually just lying around doing nothing after one and I deserve that 💗 the injection hurts a lot and I’m really scared every time… I hoped I’d get used to it but I haven’t.
I definitely need exercise to help with mood and warding off depression, but also building up and keeping muscle for all this disease stuff, and counteracting stiffness from inflammation. This week, I started incorporating my resistance bands again after not having used them for over a year. :)
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Published 15 Aug, 2025