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Ever notice how time takes on a surreal dimension when you have Lyme disease? The minutes just evaporate into thin air, and just when you thought the day should be starting, it’s already ending.
I blame cognitive problems and brain fog on the “time flies” phenomenon that happens in those of us with Lyme disease. But time also races when you spend half your life sleeping, and when activities take twice as long to complete.
It can be challenging to believe that your life isn’t a waste when you’re sick. Lately, I have felt consigned to that wasteland again. This weekend, I get to add another number to my age, and it’s a fierce reminder that my 30’s have been mostly squandered by disease, even though deep down, I know God would tell me that the suffering hasn’t been in vain.
Still, it’s difficult not to lament those years, and wonder how the first part of my 30’s would have been different if I hadn’t gotten Lyme. I know, I shouldn’t even go there…it’s a form of self-flagellation to play the “what if” game.
I have made many gains in my health, but I still struggle to maintain a “normal” life, because of the wasted time factor and the fact that I still get fewer productive hours in my day than most people who aren’t dealing with a severe illness.
Our society values production, doing and more doing, so I’m sure that the “wasted time” feeling isn’t unique to the chronically ill, but rather belongs to anyone who’s less than happy with how they spend their existence. Yet perhaps it’s exacerbated in those of us who remember how much we were once able to do, as we are daily reminded by symptoms of what we still can’t do.
Comparing ourselves to our more functional peers is never beneficial, but it’s a normal response to being around such people. This week, I implored God for help in balancing my life. Work must be a priority since I need to eat, but it has meant giving up much of my social life. It has meant renouncing activities that are important for my emotional and spiritual growth. Yet, a part of me wonders how my body can ever be fully healed if my life is comprised mostly of “have to’s” and “shoulds” and very few “want to’s?”
The crazy paradox of Lyme disease is that, in order to heal, we need social interaction, rest and relaxation. But we also need to be fiercely disciplined in order to maintain our strict treatment regimens, and to find creative ways to survive financially when our bodies tell us we can’t work a full eight-hour day.
I wish there was an easy solution. Fortunately for me, this is the first year in six that I haven’t worried myself sick over how to provide for myself. I should have just trusted God from the beginning but it’s difficult when you have no idea how you’re going to buy groceries the following week.
But I still struggle with the wasted time thing. I still battle trying to pull myself out of isolation, because work must take precedent over my volunteer activities and social time. And if my workday starts at noon, well, then, by the time I put in a few productive hours, do a few chores and my treatments, it’s nearly time to go to bed. Where does the day go? I have no idea. I have barely seen the sun rise in nearly six years but I’ve seldom been more productive the few times when I’ve managed to get up before 9:00 AM.
People tell me that they are amazed that I can write, even though I still have symptoms of Lyme disease. Admittedly, it has gotten easier, and I thank God that I was born with a sharp intellect and tenacity to begin with. It makes up for my sometimes slow mind, but writing is yet a challenge. Somehow, God blesses what I do, but I still need Him to tell me how to prioritize my life’s activities.
I can’t fix the priorities problem, and I can’t put the brakes on time so that my brain and body can catch up with it. I can increase my efficiency a little, by eating vegetables for breakfast, lunch and dinner, and by asking God to guide my steps, yet formidable problems remain.
Maybe you can relate to what I’m saying. Maybe you struggle to get your financial, emotional and spiritual needs met. You just don’t have the resources, on multiple levels, to get there.
This is what I think. We can’t try harder. We can’t push ourselves more. Most people with Lyme already do that too much as it is. Also, lamenting the lack of a balanced, productive life only serves to feed our frustration, although it can be beneficial if the grief ultimately leads us to a place of acceptance.
Maybe we just have to accept the lack of balance in our lives. Accept the time lost, the relationships that can no longer be, the fact that no, we might not be able to make a living and have a life at the same time. And then realize that this unbalanced life isn’t what God intends for us, and that He will have to do for us what we, through our limited resources, cannot. He will have to accompany us in our loneliness; bring us our bread when our bodies and brains refuse to function, and heal our bodies when we can’t afford treatments. Mostly, though, we need Him to put our hearts at peace with where we are at when we aren’t where we want to be.
I realized this week that it’s never going to be perfect. Even in perfect health, chances are, I will struggle to balance my life. It’s harder now but I’m asking God for discernment, to remove the activities in my life that are less important to my well being, and to help me to balance work with whatever else I’m supposed to be doing. And to accept the fact that I can’t have it all…yet.
May God give us all the grace to walk another day in the time-warped wilderness of Lyme, and trust to keep us on the path of right priorities, even though some of what we need may, for a time, get pushed to the wayside. A promised land awaits us, but my hope is that we may learn to rejoice in the desert of the meantime.