Balancing Hope and Reality With Chronic Illness

I’ve been navigating this chronic disability life for almost three years now. I’ve felt I’ve “figured it out” more times than I can count, and even more than I’d like to admit. That feeling inevitably gets trampled on when life feels chaotic and the list of things I wish I could accomplish gets to be a mile long. When I can look anywhere in my house and spot a few things I so badly  want to do. I want to accomplish these things with every core in my being. So much so I will run myself to bedridden day after day until I physically and mentally cannot overcome the pain during the day. Then, I crash hard, but my brain continues to accumulate tasks, so the anxiety and hopelessness increase day by day, sometimes hour by hour or minute by minute.

That is the place I currently reside. It’s Sunday, I haven’t had the house cleaners in for a couple weeks and it will be another two before they come. The floors are a mess, the walls are a complete disaster, the laundry is piled up, every surface is caked with dirt, the fish tanks need cleaning, plants need watering, school needs planning, humans need nourishing. The devil’s advocate on one shoulder shouts, “Give it up, give in, this is how you will always feel, get over it.” While on my other shoulder, a less aggressive voice says, “It’s OK, don’t worry, wipe the list clean, take it minute by minute.”

It seems obvious which voice to listen to, but when you’re living it, that choice is no longer so clear. At my core, I’m a black-and-white person. I will always initially gravitate to extremes. Over the years, I’ve gotten fairly good at recognizing the error of that type of thinking. I’ve also gotten pretty good at catching myself swinging to the extremes and bringing myself back to the often confusing middle ground. This pull toward extremes paired with stubbornness and a (faulty) belief my value lies in my ability, makes for some really difficult days sometimes.

It makes it incredibly easy to push myself much farther than I should: “I must do it all.”

It makes it hard to allow grace: “I don’t have to do it all.”

It makes it almost impossible to find satisfaction in the things I can and do accomplish: “Yay! I made and cleaned up supper!”

The ironic thing is those happy thoughts from accomplishing a long list of tasks each day are very fleeting and quickly replaced by thoughts which make me feel much less happy.

As I type this, it is -30 degrees Celsius outside and I’m sitting on my bed while the sun shines brightly, making it feel like a warm spring day inside. I’m taking a few minutes to clear my mind (by allowing my fingers to make sense of my thoughts), take some deep breaths, bring myself back to my reality.

For the last couple weeks, I’ve tried, and almost succeeded, in performing day-to-day tasks of a stay-at-home mom. I’ve felt satisfied and accomplished. I’ve also gone to bed barely walking every night. This weekend, the facade of this act has come to the surface. I’ve been irritable, extremely fatigued, unmotivated and emotional — all sure signs I’ve been ignoring the physical signs my body couldn’t handle the amount I was forcing it to do.

I’ve danced this dance a thousand times over the last three years, and still, I surprise myself when I allow it to happen again. I describe this as my foolishness, but I suppose at a much deeper level, this foolishness is wrapped up in hope. The hope of functioning 100% normally has been long since buried. I actually remember the day I realized it needed to be buried. Yet, it’s that very hope that emerges on the days I’m feeling energetic enough to push through the pain.

Is hope wrong? No, I don’t think so, but I also think it needs to be cushioned by a bit of a reality. I will almost certainly never return to what once was my life. Maintaining that hope would (and does) result in feelings of hopelessness, as day after day my condition deteriorates.

So, instead I consciously place my hope in a more realistic scenario. My hope is my body will soon stabilize in a predictable day-to-day ability. I’m ready to run toward that hope and to actively work toward that goal. I’m going to be getting help to be able to achieve that through a really neat chronic pain program that is run in my city. In the meantime, I’ll continue to try and control my thoughts and expectations so I don’t end up here on my bed writing out another post about how I pushed myself to the brink again.

A version of this story was originally published on Joy of Simplicity.