What 'Tired' Feels Like When You Live With Chronic Illness

Everyone is tired these days. You only have to look at how many of us found the experience of being essentially under house arrest to avoid COVID-19 a bit of a relief from our regular routine to understand that the modern world is a demanding place.

But the tiredness of a healthy person just isn’t chronic illness tired. Sorry guys, it’s not. Not unless you have a baby under 6 weeks old and also a toddler, anyway, which is the closest experience that I had as a healthy person to the tiredness that has come with my chronic pain and fibromyalgia.

If pain is a feature of your illness, there is the physical tiredness of moving around a body that is hurting, which is akin to moving everything uphill. There is also the sleepiness that comes with constantly sleeping badly due to the pain and constantly being on strong painkillers to dull it. I have never intentionally overdosed on my pain meds, but I am sure I’ve taken extra doses because I can’t remember taking them earlier on a few occasions.

But even that doesn’t cover all the tiredness many of us experience. There is the mental load that comes with chronic illness. I am on as many as eight different medications at the same time, plus some supplements, which all need to be taken at different times of day at different dosages. They all need to be ordered and the inevitable slips need to be chased. It is very similar to being constantly on duty as a mother: always checking that there is food, that teeth have been cleaned, homework done and so on.

The medications and medical appointments are not the only part of the mental load. Like most people with chronic pain, my limited energy must be dealt out very carefully to make it through the day. Can I hang out the washing or do I need to sit before I make lunch? Am I thirsty enough to get off the sofa, although it hurts, to reach that water? A thousand tiny little calculations are needed to get things done without that feeling you’ve crossed over into your “energy overdraft” and are going to pay the price later on in terms of extra pain.

And then there is the emotional tiredness many of us feel. All the shouting about being in pain and being fed up that we (mostly) haven’t done out loud is quietly going on under the surface. All the worry that we have asked for too much help today and are going to be deserted by our loved ones. All the anger because we didn’t ask for this and nothing has managed to cure us. All the exasperation with people who don’t understand why we don’t manage to get more done with our time. We aren’t constantly bitter but we may be cross more often than we want to express.

Like everything I’ve written for The Mighty, I’m not making this list to be pitied, although it is always nice to have a vent. I just want people to understand what it’s like for me to be chronically ill, and for others not to feel quite so alone. We are trying our best, so please bear with us. And don’t call after nine o’clock!