Describing a colour to a blind person, explaining cricket’s LBW rule to a visiting alien and helping someone understand what M.E is like. These three things are officially the hardest things to do in the known universe.
OK, that might not be a certified stat but you get my point! As people with M.E, we often struggle to comprehend it ourselves so, as with many “invisible illnesses”, how on earth do you describe it to others?
I’ve thought of an analogy which may be useful. Like most comparisons, it’s not perfect, but it’s how it feels to me and goes at least some way to explaining in some real life, meaningful terms at least one aspect of it. Because it’s so frustrating when people don’t get it, think you’re lazy or that it’s just in your head, isn’t it?
So… imagine your body is a smartphone, such as an iPhone. Imagine its battery is your energy levels. Imagine that all its functions and apps are the activities that people do each day.
Some of the apps (such as ones with lots of graphics or video) will drain more of the battery than other more basic, smaller apps (like typing a quick note or doing a sum on the calculator). Life’s daily tasks are the same of course – some will take more energy than others.
But the battery of a person with M.E is not like a brand new smartphone’s battery, where you can do plenty on it before it needs charging. Even doing some of the smaller functions drains the battery quite quickly. If you’ve ever had an iPhone for a number of years and noticed how it struggles to retain its charge, you’ll know what I mean! That’s the same for us in life.
So after a day of use, just like when we go to sleep at night to recharge our bodies, we put our phone on charge. When you wake up in the morning, the phone and you are recharged and (perhaps with the assistance of a coffee too!) you are good to go again for the day. Not so for a person with M.E – their battery has barely recharged at all. In some cases, it’s still showing a low percentage in the red.
But day-to-day life demands that you start doing activities again – some of the basic apps and some of the bigger, battery draining ones. Your phone battery level is showing at 1% but you need to stream a long video (go to a heavy meeting), take some photos and upload some pictures (dash around after the kids), and so on… not to mention the power required to turn the phone on (get out of bed) in the first place…
At the time of writing, I’m yet to attend the M.E therapy course which talks about pacing but my interpretation from this analogy is that we need to keep our bodies on charge more often and consider which functions we’re going to fulfil that day instead of attempting to do everything. That includes the days when we have managed to get our battery levels up higher, because it’s not a battery which can last as long as others so we need to leave some charge in there to carry over on to the next day.
I hope that helps! What do you think? How do you explain M.E to loved ones or even strangers? Do you have another analogy? Please – share in the comments for us all below and * sign-up in the footer to be notified first when future blogs go live! *