The Hidden Cost of Freedom: Chronic Fatigue and the Mobility Aid Dilemma
Learning to live with the tension between mobility, energy, and the slow creep of deconditioning
I’ve had a typical day.
Recently, I’ve been discovering more than ever the freedom that my mobility aids bring. After my first solo foray in a wheelchair to the supermarket, I felt emboldened to venture further and enjoy the summer here in the United Kingdom.
But then I get worried.
My worry is deconditioning.
Wheelchairs and mobility scooters help me conserve energy, and are especially useful on days when I have none, but they come at a cost.
The more I use them, the less I use my own muscles.
The less I use my muscles, the more out of shape I become.
The more out of shape I become, the more weight I put on.
The more weight I put on, the more exhausting it feels to go anywhere.
And the more exhausting it feels, the more I rely on mobility aids.
Can you see how this can spiral into an unhealthy cycle?
I can’t ditch the aids, without them, I’d barely go out at all. But I also can’t fully embrace them, or I risk walking less and less.
Back to today.
This morning, fuelled by the fact that I’d used my wheelchair the whole day before (on the train!), I decided to take the dogs for a “walk” to get some exercise. As soon as I left the house, I knew I’d made a mistake.
My unruly Cavalier King Charles Spaniel looked puzzled, the audacity of his dad using two legs rather than wheels! He was so excited, he joyfully ran off and disappeared into the distance.
Meanwhile, I was attempting to “encourage” our Pomeranian (the queen) to get a move on. But I knew I couldn’t possibly move fast enough — or far enough — to catch up with the Spaniel.
Cue lots of muttering, attempting to catch up, shouting the Spaniels name in a vain hope that he would return.
I got there in the end. But I returned to the house just ten minutes later, exhausted and utterly defeated.
The dogs looked at me dejectedly, in an unmistakable “Is that it?” kind of way.
That brief attempt at exercise left me shaky and wobbly for the rest of the morning. Was it worth it? Maybe. But it highlights the constant battle that chronic fatigue presents every single day.
I guess that battle is the point of it, the feeling that I cannot ever give in to this illness and just accept the limitations that it brings. My relentless fight back against whatever has drained the energy from my body.
But honestly, Its exhausting.
Paul Clarke has written a book, ‘Living with Long Covid’, which is available here on Amazon. Please consider subscribing to receive my latest podcast and writings; it really does help.
Sorry to hear that you are struggling with this dilemma Paul, trapped between having no energy to exercise and no exercise giving you less energy. I recognise this cycle, although in my case it is far less debilitating. I hope you can overcome this challenging chapter in your life. I think coffee and a (small) cake with a friend might help ;-D
I encounter something like this with friends who use manual wheelchairs, where people are always offering to push them places, but if they accept the offer too often then they loose strength in their arms and become dependant. Hearing your experience of then having to balance it all with chronic fatigue really highlights the dilemma. No simple fixes, thanks for sharing.