What It Means to Be 'Tired' With Chronic Pain

Everyone gets tired on occasion, right? You know, where you may be dragging a little more than normal. Maybe you didn’t sleep well the night before. This is to be expected. Well, for those of us who live with chronic, intractable pain, being a “little tired” on occasion would actually be welcomed, dare I say amazing. Unfortunately, what we experience instead is sheer exhaustion and disabling fatigue on a 24/7 basis.

Because chronic intractable pain is constant, difficult to manage, incurable and usually severe, our bodies are constantly fighting it, day in and day out. This affects every part and piece of us — many layers of our hormones, including our metabolic and endocrine systems, adrenal glands and others are affected, which causes many other systems and organs in our bodies to break down. The result is a progression that we have to fight back against every day. This fight leaves us with little to no energy, which causes immeasurable and unexplainable fatigue.

So how does this “everyday fight” against our bodies manifest? What does this extreme fatigue look like, feel like, act like?

It means that we have to literally force ourselves to get out of bed and leave the house — every. single. time.

It means that we have a mental block — a “brain fog” that makes it difficult to concentrate. We forget words and sometimes can’t even speak coherently.

It means that no matter how much sleep we get (spoiler alert — it’s usually not much due to the pain), it’s never restful or restorative sleep. We could sleep 24hrs/day and still be tired.

It means that simple tasks leave us winded and short of breath. It means that walking a little more than a few steps makes us breathe a little harder or makes our heart race. Stairs? Yeah, good luck.

It means that we have to be aware of our surroundings at all times to prepare for a simple outing. The temperature, noise level, light, activity, driving distance, seating arrangements, food/drink, modalities, etc. are all things we need to concern ourselves with so accommodations can be made in order to not overwhelm our bodies with even more pain and fatigue.

It means that every time we attempt to shower — to wash our hair, shave our legs, (etc.), we have to prepare beforehand because it takes so much energy that we don’t have in the first place. And we have to recuperate afterwards like we have run a marathon. And the days we decide to actually go the extra mile to fix our hair and maybe do our makeup? Yeah, it’s an Olympic event. That’s why it rarely to never happens. But when we do, we feel better about ourselves, which is good for our psyche — and we need that help.

It means that every extremity and body part — hands, arms, feet, legs, head, eyes, etc. — feel as though they have bricks attached that are weighing us down and simply not allowing us to move.

It means we need to sit, or lie down or veg out and do nothing, not even look at the phone. Our “spoons” are in the negative! And if we say we need to sit or lie down — or leave/discontinue an activity — that means now!

It means our pain and symptoms have sucked the life out of us. Simple tasks such as talking on the phone, using our arms/hands to search the internet, texting, making a sandwich, brushing our teeth, etc. can cause our pain/symptoms to flare and take more energy healthy people take for granted everyday.

It means our extremities and entire body are heavy and weak after barely any activity. Small activity such as walking across a crowded parking lot in the heat can make us feel like passing out.

It means that we are completely spent — we have reached the limit and absolutely cannot do anything else. The fatigue is debilitating.

When we are “tired,” it means something much different than the tired you (“normal,” healthy society) are used to hearing or saying yourselves. I mentioned in another story that a friend of mine with a rare cancer actually told me she finally understood what fatigue is. She is at the point where she doesn’t want to even get out of bed most days. I told her I understood. I have to force myself to get out of bed and leave my house every time I want to do something. Why? Because I am always tired. It never goes away. But guess what? I do force myself because I have no choice if I want to live and not let the pain win.

What does being “tired” mean to you?