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The 7 steps for returning to physical activity with Long COVID or ME/CFS.
My experience with Long COVID recovery, my clients experiences and my hindsight has led me to create a step by step roadmap to returning to physical activity. Whilst I lean on my lived experience, the framework and principle can be applied by anyone who has had a prolonged exercise hiatus due to health or other circumstances.
Long COVID or ME/CFS and exercise is a controversial topic. So first let me address graded exercise therapy (GET) and why in my view it is not appropriate.
GET is a rehabilitation approach that gradually increases physical activity levels over time, with the aim of improving overall function and reducing symptoms. Yet people with long COVID including myself experienced exacerbating symptoms with a GET program.
Early on in my illness, when I still was not ready to let go of exercise I applied to the Nuffield Health Long Covid rehabilitation program. I was largely bed bound yet was accepted into the program. I became hopeful and thought they must have the expertise to really help. The program consisted of fatigue management and wellbeing support, one on one coaching and group exercise. The emotional support from the coach and group was great. The exercise was not GET it the strictest sense, but it still progressed too quickly, and was clearly adapted from a general rehab program. Everyone in my group experienced PEM and the textbook fatigue management resources only made me focus on my symptoms more.
The problem in my view with GET is it is prescribed in a one size fits all way, without acknowledging the complexity of long COVID, nor an individual’s symptoms and stage of recovery. This is not a criticism of medical and rehabilitation professionals. It just highlights the importance of research and collaboration among healthcare professionals, researchers and most importantly people with long COVID.
The long covid returning to physical activity roadmap
The following steps are intended to provide you with a framework that works with your recovery and not as a means for accelerating it. Before you read on, here are some more points to note.
Each step is additive, not instead of. For example, I always recommend maintaining meditation and mobility in your recovery toolkit.
Timeframes are not provided, as recovery is so individual. What I can say is you will instinctively know when you are ready for the next step.
It’s ok to move forwards and backwards through these steps. You probably will with a fluctuating and unpredictable condition.
step #1 - Radical acceptance
The first step is radical acceptance. Acceptance of where you are at with your health and acceptance that exercise is not a route to long COVID or ME/CFS recovery. Fact. But the great thing is that physical activity can be a marker in your overall recovery. This is the distinction. The earlier you can make this mindset shift the better, so you can give your body what it needs in the earlier stages of your condition.
Step #2 - Redefine exercise.
As active people the hardest thing when we got sick was hitting the pause button on training. Perhaps like me you pushed the boundaries, attempting to exercise on the better days, only to crash badly. Exercise isn't exercise to us, if you're not going harder, heavier, longer, faster. But right now your body needs to regulate its nervous system. So at this stage physical activity equals Breath Work, Meditation, Yoga Nidra and maybe gentle Yin or Restorative Yoga. This is your exercise for now.
STEP #3 - Incorporate gentle movement
The next step when you feel ready is to add in a program of gentle movement that is not in any way graded. Taking a less is more approach with an objective to keep your muscles and joints healthy while you continue to recover.
You should start with floor based movements, especially if you suffer from POTS. Over time as your health improves you can include chair and standing movements. Aim for twice a week alongside your other forms of physical activity in step 2, so your body learns to adapt. However, what you do and how often should be driven by how you are feeling.
If you want 121 coaching, and a proven program to follow, check out The Baseline Club.
step #4 -Walk
In my view walking is the first form of more typical exercise you should increase when able. Bonus if you can get outside and into nature. It really does do wonders for our nervous system.
Now here’s something slightly controversial, my strong advice is to not track your steps, distance, time, or your heart rate. This fixation and hypervigilance gives power to your symptoms. I am not suggesting going on a 10k hike. You can have a rough idea of how long you may walk for. And that might be around 5 mins initially, but just take a mindful walk.
Yes you may feel symptomatic afterwards but if you respond with indifference not fear, your brain does not interpret it as dangerous and you will be able to go again. Before you know it you will be going further and further without thinking or repercussions.
STEP #5 - Do fun things
When you engage with joy, your brain does not perceive the activity as dangerous and therefore will not trigger a negative response in the body. For me that activity is Padel Tennis which I resumed when I was still symptomatic most days to some degree.
You may not be ready for something so active but you can find joyful movement elsewhere. For example, you could go to a playground and swing on a swing. Trust me, I did this as soon as I was walking more and the joy was immense.
STEP #6 - START SOMETHING NEW
Partaking in physical activities that don’t have a conditioned response will help you build confidence in your exercise tolerance. A conditioned response is where your symptoms are linked with an activity. So start something new. For example, a client of mine took up pilates towards the end of her recovery and loved it.
If you can’t think of something new, change the environment so it feels different and new. Go swimming at a different pool, or find new walking routes. When you don’t experience symptoms, you are building evidence that your brain is the culprit and your body is already ok.
STEP #6 -Resume previous forms of exercise
This is the last step and an exciting one as it means you are either at the very end of your recovery journey, experiencing no PEM or even fully recovered.
Whether you are resuming strength training or running, I recommend building back slowly. I also suggest avoiding situations where you will feel pressure to do too much too quickly. That could be in group exercise or even with a trainer who may not grasp what you have been through.
I hope you found this framework useful. Please share with anyone who may benefit.
P.S here are 2 ways I can help you:
The Baseline Club. Affordable monthly coaching, to help you perform deliberate movement consistently and safely build back your exercise tolerance, keeping your muscles and joints healthy as you heal. Learn more.
The 90 Day Rebound Method. A unique reconditioning program with a 100% success rate! for long COVID and chronic illness warriors no longer experience PEM and are ready to get their strength back in a progressive yet safe way. Take a closer look.
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