Living with a chronic illness can be difficult at the best of times, and exercise is just another complicated part of the puzzle. Writer Chloe Johnson shares the methods she’s found helpful in her own health journey.
I have no mystical deck of cards, but I can tell the future. I feel the nerve pain start to work its way around me like a vice and I know, with certainty, that tonight will be painful. I will not be able to take off my own clothes.
My fate continues: for the next few days, my body will revolt. A low-grade fever will set in and other symptoms, like devoted fans, will follow. I had taken a day trip out, walking around York’s cobblestones and this was the consequence. Other days, I will attempt a long walk and come back feeling refreshed, with my muscles sore because I made them sore for once.
This is not uncommon for those with a chronic illness. What can work out one day, can leave you bedridden the next. Add on top of this the stressors of constant doctors’ appointments, symptom tracking, medication, and it can be difficult not to feel like you’re barely treading water.
When searching for ways to help alleviate symptoms of chronic illness and chronic pain, exercise always comes out on top. In fact, NICE’s now-paused guidelines for treating chronic myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) caused an uproar… specifically due to the fact these new guidelines would not recommend graded exercise therapy in the treatment of this condition.
However, with complex, chronic conditions such as these, it’s nearly impossible to predict the ability to exercise (let alone things like mood or time). It can often feel like exercise is branded as a quick fix, which is not the case.
Despite the complicated relationship between chronic illness and exercise, many people with chronic illness do want to factor in moving their body as part of their day, and there are many benefits to doing so. Where does that leave you then, if you want to move your body but aren’t sure how to adapt your routine to a recent chronic illness flare or diagnosis?
Here are four ways I’ve found work for me and my chronic illness:
Make adaptations to exercises and routines
Kate Stanforth, an inclusive dance teacher, is known for her ability to provide adapted dance routines for those with reduced mobility. Stanforth often uses her wheelchair to teach from, showing the benefit of using mobility aids when exercising.
Similarly, YouTube dance workouts are one of the ways of moving my body that I have found can also be adapted quite easily, as opposed to taking online cardio or fitness classes that are all about “pushing your limits”.
The fact they are usually fun, upbeat, and focused on enjoying the music is a bonus. Taking more rest breaks, only doing part of the exercise, or doing parts of the routine throughout the day rather than in one go are all perfectly acceptable ways of making sure you’re not putting your health at risk.
Make allowances for yourself
This one is hard. Not being able to do something you could do yesterday is scary, especially as with chronic illnesses you never know if a new symptom is here to stay. This may encourage you to push yourself beyond your limits because you could do it yesterday. But one bad day, or a series of bad days, shouldn’t invalidate your progress.
As tricky as it is to conceptualise, your worth is not rooted in your health. Some days you may be only able to walk to the medicine cabinet, some days you may need a mobility aid; however you can best exercise is a decision only you can make. Sometimes you may need to stop halfway through a workout, but that does not invalidate what you managed to do. Working out from bed is fine, too – just because it’s not “normal” doesn’t make it any less valuable for you.
Make time for rest
It’s said time and time again, and I think that’s because this one is hard to hear and even harder to act on. Rest is needed, not earned. Exercise can be important in managing chronic health conditions, but so are other things like food, rest, stress levels, and sleep.
Taking time away from exercise can allow you to evaluate if you are exercising for the right reasons. With diet culture and ableism intermingling, it can feel like you need to exercise to prove you are properly working to “combat” your illness – perhaps this has even been given as friendly “advice”. Remember that this isn’t true, and that you know your body best. Depending on your illness, exercise can even exasperate your symptoms. Make time to honour your body and mind and their need to rest.
Make use of our friends
In our quest to exercise, sometimes we can forget how social getting together and going on a walk is. Having a friend along for the ride can serve a dual purpose: they can give you a fun reason to get your body moving and they can check in with you to see how you’re doing.
Having a chronic illness often makes you used to adapting, but also to toughing out pain and uncomfortable feelings. Having somebody on the outside who can gently ask you if you’re pushing through out of guilt or sheer stubbornness can help you respect your own boundaries. You can go run an errand together or visit a bookstore; exercise doesn’t always have to mean the gym.
Working out with a chronic illness is tough and there’s no one-size-fits-all solution. Doing what’s best for you will vary day to day and year to year.
Listening to your body can be difficult with a chronic illness, but being gentle and patient with yourself is one of the best ways you can make sure the exercise that you’re doing is suitable for you. More isn’t always better and what you can do is enough.
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