Resting with Chronic Illness

Today I ran a thousand miles through the heavy autumn air with leaves crunching underfoot as my breath grew deep, and my legs weary.

Well, maybe not a thousand.

Maybe I didn't run, either. But, it felt like it. Let me explain....

As I mentioned before, I have chronic migraines (among a few other illnesses) and yesterday I was struck down with a pretty severe one. Today it seemed to let up some, but the after affect lingered. My body was beyond exhausted. My head was foggy, and not communicating well with my brain. In general my body ached, and moaned reminiscent of the flu, or maybe a horrid hangover.

I felt the fog lifting, and the heaviness begin to ease about 2 hours ago. I'm sure that this isn't what feeling all the way well feels like, but in comparison I feel as if I could climb a mountain at 9:30 PM. I wish I could say this is unusual, but it isn't. My brain seems to come alive in the afternoon, and by evening energy levels soar. My pain is usually by far less in the later part of the day. I want to live by the moonlight, but unfortunately the world is on another schedule.

I wonder what people think when they think about the daily lives of people with chronic illnesses. Do they imagine a frail person taking pills, and laying on the couch all day? Do they think about all the rest we all must be getting? Do they imagine us with energy reserves that we can tap into as the need arises? Much like a bank account, or a camel. Do people suppose that when we stay home for a day that we can feel refreshed later?


The answer is likely yes, they do think this. Most can't fathom the life many people with chronic illness live daily. Outsiders will often liken it to recovering from a virus, or injury where the body repairs itself with rest, and allows the person to rejoin normal daily activities once the rest period is over. Their lived experience serve as a poor metric for those of us with chronic illness, but their lives are the only thing they know. I guess that's why I am writing this. Maybe it will help those who aren't experiencing this kind of life to have a small glimpse into a firsthand account of the challenges, and struggles many of us face daily. Of course I could never speak for everyone's experience, but I feel like my words might be a good starting place for a lot of people that don't know much about this subject.

The thing with chronic pain, and chronic illness is that it occurs often. On some level I experience pain, fatigue, and mental dullness every day, whether that is attributed to migraines, IBS, intercystial cystitis, or even the drag of depression. When I stay home from appointments, errands, and the like I am not necessarily "resting" in the way most would think. I still have to do basic daily tasks. Those tasks feel like I am completing a marathon, and because I am ill so often there is no way for me to put many things off for another day when I feel better. I wouldn't ever get anything done. It would be an endless to-do list for a tomorrow that never comes. So, I prod along. I do the dishes, the laundry, and pay bills. I buy the groceries, and make dinner. I do this often at a slow pace. On really bad days the bare minimum takes all day. It's not the feet up, Netflix binging day I think most people think I'm having. It's my nose to the grindstone giving all I've got kinda day just to live.

Of course, that's not to say that my life doesn't hold moments of joy. It does. All the time. I have learned to see life as a series of experiences to observe, have, and feel. Most moments have within them something positive, something beautiful. Whether that's the sun shining through the trees, the warmth of fuzzy socks, our animal companions, or the sound of a clock ticking in a blissfully quiet home. There's countless examples of these small joys in all of our lives, even as some of us struggle more than we don't. One thing that helps us more than anything is having friends and family that truly put forth the effort to understand us without judgment. A little bit of understanding can go a long way.