How to exercise with ME and chronic fatigue

Via Peters

Intuitive movement is all about listening to your body, your energy levels and your desire to move. It’s a great way of moving for many people, but what happens when you live with chronic fatigue? 

Before being diagnosed with a neurological illness, myalgic encephalomyelitis (ME), I was an ardent yogi and attended multiple classes a week. I met my long-time boyfriend hiking a mountain in Peru, and running a marathon was on my bucket list before turning 30. I went from young, fit and active, to 24/7 exhaustion almost overnight.

ME is indescribable. I can only explain it to friends as a constant feeling of jet lag combined with the hangover from New Year’s Eve. It causes light and sound intolerance, muscle weakness, chronic debilitating fatigue and has profoundly changed the way I live my life. 

Like many other chronic illnesses, it exists on a spectrum of ‘energy limiting’ qualities. For many, the idea of exercising again is a mere pipe dream, and it’s important to acknowledge the fact that those who have severe levels of the illness aren’t able to look for answers on how to move their bodies. But there are plenty, like me, who do want to exercise within our boundaries.

As with any dynamic disability, my quest for fitness has been a series of fits and starts. And as it is for many able-bodied and disabled movers, the mental side of things is often being tougher than the physical. Now, I relate to words like ‘movement’ more than ‘exercise’, and try to focus on the practice of stretching and gentle pilates rather than anything that raises my heart rate excessively. Agility, muscle suppleness and strength help me deal with flare-ups.

Recent NICE guidance finally removed GET (graded exercise therapy) from the treatment plans of people with ME, as studies and anecdotal experiences showed how harmful exercising can be at the early stages of an ME diagnosis. It was found to cause post-exertion malaise and trigger extreme fatigue that leaves people incapacitated for weeks and months at a time.

Grace is in her mid-20s and lives with ME. She tells Stylist that those GET guidelines “sort of coloured the next few years and I got really scared of exercise”.

“While it did cause flares and was obviously hideous, I’ve shied away from exercise that could make things better for me because of the lack of understanding from medical professionals.”

Grace and I have an eerily similar story to moving our bodies again. We both (without knowing each other) took up sea swimming on the south coast, spending mornings on Brighton beach in single-digit-degree weather, in an effort to reconnect with ourselves. Grace said she heard about the benefits of cold water swimming on the autonomic nervous system from members of an ME support group, who suggested cold showers as a way to relieve pain. 

She read stories of others describing “the freedom to be able to move their bodies for short periods of time and not feel punished for it”. She took to the sea when “my joints were on fire, or my back was throbbing with that mysterious achy pain I carry everywhere” and fell in love.

It doesn’t have to be marathon training or heavy weight training that can cause symptoms to spiral. Sophie has been unwell for over a decade, and claims that it was doing intense exercise like Zumba while living with undiagnosed ME that saw her symptoms go from manageable to her being unable to work or leave the house. 

The journey back to moving her body has been tough: “For most of three years, I simply didn’t have the energy to return to intentional movement because I was saving it all to carefully pace basic activities like showering, eating, etc. I desperately missed dancing, especially when my mental health was poor.” In the last six months, Sophie has found some stability, and is working with a coach to find her way back to the dance floor she misses so much.

“I’ve started stretching every morning before I get out of bed, and I do the conditioning exercises that my coach gives me. Our goal is to have me walking for five minutes straight, three times a week by the end of January, without payback.”

So, what makes her experience different this time round? She’s taking things much slower, with her coach focusing on data like heart rate and heart rate variability (HRV) and planning rest days throughout the week. Timing is key, Sophie explains, and for her, taking a three-year break from any exercise was the right choice: “I don’t believe I could have done it sooner, as I was so unwell.”

I spoke to Zoe McKenzie (aka @activelyautoimmune), a physiotherapist and personal trainer who shares her personal experiences with illness and routines on Instagram. She is most known for her Bed Pilates series, a weekly online class that takes you through a series of movements to gently strengthen muscles, all while remaining horizontal. 

McKenzie works with people who have ME but doesn’t advise movement for everyone: “The first thing (to do) is assess whether they are at a stage where introducing movement is safe.” She echoes the experiences of everyone I have spoken to: in the early stages of the condition or without knowledge of a baseline, exercise is not recommended. 

McKenzie goes on to explain that knowing how to measure symptoms can be vital to tracking safe movement. “Whether it’s using tools like resting heart rate or the anaerobic threshold theory – both are useful to help monitor symptoms as we add in movement.”

Qualified PT and chronic illness survivor Julie Hunter echoes McKenzie’s sentiments. Hunter comes from a sports background, having spent a decade competing as a cyclist and training other athletes before becoming unwell. She says that after developing ME, she lost it all: “My ability to exercise freely was taken away from me, and so was my identity.”

She now uses movement to describe what she does, rejecting the word ‘exercise’, which conjures images of previous trauma. Hunter explains: “Having an all-or-nothing mindset surrounding exercise – or any activity – can be incredibly detrimental for someone living with ME.”

Both Hunter and McKenzie’s approach to movement focuses on sustainability, keeping their clients safe and avoiding inducing symptoms. “Unlike traditional exercise models, I heavily rely on feedback, flexibility, and progress much more gradually,” says Hunter. Programmes are tailor-made to clients, taking a holistic look at the lives of the people they work with. With GET removed from NHS treatment plans, we can only dream of an approach like this to take its place.

I ask McKenzie the question that many of us living with ME worry about: “What if it makes me worse?” Her answer is reassuring: “At the right dose, movement can help with secondary pain from being immobile, increase your strength and make functional tasks easier.” Exercise, she says, is more than improving your physical health: “It helps us reconnect with your breath and body again. The fear mindset, although completely understandable, feeds into a high alert nervous system so moving out of this can help calm the mind and body down.”

With flexible movement instead of strict exercise regimes in mind, McKenzie reminds us that “all movement counts, from breathing exercises to bed exercises – it doesn’t have to look, be or feel a certain way. It’s whatever feels right for your body.”

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