What Does ‘Listen to Your Body’ Mean When You Have M.E?

So I’ve been doing this fundraiser, where I try to get 1000 body weight reps done in half an hour every day to raise money for #meaction. It’s been a test for me in listening to my body, and knowing when to slow down, rest, or even skip a day.

And it got me thinking, what does it mean to ‘listen to your body’ when you have a chronic health condition like M.E?

I asked some lovely folks on social media, and heard many times of how at first they had tried to push past the pain.

“When I was mild and could still go running every now and again, I thought it meant stopping when I got those endorphins and the satisfying ache of a healthy workout.

When I got a bit worse and could only go on 3 mile walks, I thought it meant I could walk briskly and be a bit out of breath as long as I rested on a bench every now and again.

Then I got worse and figured out that I could maybe still go on short walks as long as they were flat or downhill and I was using my sticks and walking slow enough that I wasn’t out of breath.

Now I’m moderate and mostly housebound, I know that if I can feel any kind of resistance or pleasant endorphins relating to exercise, then I’ve done too much. I cannot get out of breath, I cannot allow my arms to ache if I fold laundry, I cannot stand for longer than a minute. I have to constantly monitor for every, almost imperceptible, change in my symptoms in order to prevent myself getting worse still, but it’s an impossible task.” - Marney

“It’s something I wish I’d done sooner. I don’t think I’d have deteriorated as much if I hadn’t pushed through, if I’d have been able to listen to my body and respond without thinking that it meant I was a weak person. I now know that that doesn’t make you a weak person, and I wish I’d been able to understand that sooner.” - Hattie

“Even though my body was giving me signs that I needed stop and rest I would push and push until I was forced to stop with a migraine so severe that even my husband thought I was dying. I continued with this pattern for years and years. Now, I’m mainly housebound and often bed bound just by doing the simplest of tasks. There are even days when digesting food pushes me to my limit.” - @fragmented.me

I also learned what it sometimes takes for a person with M.E to listen to their body.

“Listening to my body is isolating myself from people, noise, light & stimulation. It’s putting my health first which is sad when I want to join in the fun” - @linzi__lou

“For me it’s a struggle to stay within my very low limits. I’m more cognitively able than physically able, so that means I make lots of plans and set lots of goals and they’re usually unattainable. My body just can’t keep up with my mind. The aim is to stay within my limits so I can have more better, more productive days in bed and fewer horrid days in pain in the dark. Listening to my body means not pushing the boundaries but staying well within them. And scheduled rest is as important as scheduled movement.” - @chronicallyhopefulblog

“The best success I had with it is consciously doing “body scans” periodically, to see how I feel. I struggle to even know if I am hungry or thirsty without consciously considering it.” - Jenni

“Now, it’s the only way I can survive. I have to listen to my body. How my body is feeling is the best way to judge when I’m nearing my limit. I don’t take painkillers in the day, because pain is a really useful tool for me to know that I’m doing too much.” - Hattie

This next comment highlighted the fact that many people with M.E don’t get the advice and healthcare they need from professionals:

“One of the reasons we get so ill is that nobody really understands the limits this illness places upon us until it’s too late. It’s a learning curve that we, the patient, cannot fathom in time, whilst the medical profession, unfortunately, steers us in the opposite direction. At the beginning we’re told to exercise more, don’t focus on our symptoms etc when we should do the exact opposite.” - Marney

That is why I am raising money for #meaction, to take a step towards a future with better healthcare for people with M.E, and they receive the help they need right from the start. If you want to donate, do so here!

Thank you so much to everyone who sent me their stories.

Love and Spoons to you all.

Ellie