Hi! January went on for over 4 months. It’s technically February now, but I’m still not convinced that January isn’t the only month in 2020 and that we won’t all still be writing ‘January 2020’ in 9 more months. It’s been that long.
This is inconvenient to say the least, seeing as this means my 2nd month on disulfiram (DSF) has also (seemingly) gone on for over 4 months.
I’ve been putting off writing this update for about 2 weeks, and you’ll see why. But my only intention for this blog is to chronicle everything with honesty, so here we go!!
When my doctor told me about DSF initially, she was transparent in warning that it will make me feel horrible while I’m on it, and the full benefit will only be discovered after the fact. So I know what I signed myself up for. Uhh… she was right.
I like to think I’ve adjusted to the ebb and flow of life with chronic illness. One hour will feel great, the next horrible, a few good days here, followed by a week of bad health. No matter the ratio of ‘good’ to ‘bad’ days, I always know the shift is coming. I saw a post on Instagram from @how.u.feeling that said “I’ve been sick for so long, some people seem to think I should be used to it. What they don’t understand is that it doesn’t get easier, it just gets more exhausting.”
As I’m writing this, I’m on day 5 of a headache not even my magic acupuncturist or physical therapist could touch. I have wrist magnets for nausea like a freaking seaman or pregnant lady, but the desire to yak at any moment lingers close. Joint pain drives deep and strong like a corkscrew into the wine that I cannot drink. Mental function drifts in and out leaving me staring into the great abyss like a little retirement home resident. Bone crushing fatigue greets me every morning and has me bargaining ‘if you just crawl into the kitchen, you can have a chocolate chip, c’mon, you can do it, think of the chocolate, it’s waiting for you’ but even with that promise of light in the darkness, I can’t seem to get my body to move and I watch life happen and pass me by from screens on my phone as I lay in bed.
For two weeks this has been my daily reality. And I’m tired. Like really tired. I say it’s been two weeks of this, but that’s not entirely true. It’s been 19 months. I’m tired of fighting so hard every day just to wake up the next morning with the same pain, brain fog, and fatigue. Intellectually, I understand that things must get worse (or remain worse) before they get better, but that information alone does not always empower me to move forward. Each day I’m confronted with this physical reality and have the same laundry list of non-negotiable ‘to-do’s’ all in the name of healing. There are no days off from my 4x a day medicine regiment, two daily injections, eating this, drinking that, doing these PT exercises, etc. I can’t do it all.
I don’t love statements that contain “I can’t”. I try to stay away from them as they focus energy down towards limitations instead of up towards possibility, but sometimes it’s necessary to soberly address the reality of whatever situation you’re in; an ignorantly placed a band-aid of positivity doesn’t do any good.
Because I can’t do it all, I’m confronted with choices everyday. With limited functionality, what do I need to do to best serve my body and mind?
Unfortunately, What is good for my mind often makes my body suffer and what is healing for my body is hard on my mind.
My mind is screaming that it needs a true day off to rest and reset. For me, that looks like a day off from medicines and a break from the pain. Just the most basic day would feel like heaven; grab a cup of coffee, go to the gym, eat good food, be with the people I love. But my body can’t give my mind that (right now). And my body needs mental fortitude, a healing mindset, and a space to rest without expectation,. But my mind can’t give my body that (right now). I’m worn down and worn out.
My brain and body are at war with each other and I’m trapped in the middle. I feel powerless and unequipped. I don’t know how to give my mind what it needs and I don’t know how to give my body what it needs. And I don’t know how to cope with this reality either. I am stuck in my brain and with my thoughts, I don’t even have the luxury of distraction because I can’t do anything to take my mind off my painful present. I hate dwelling on the negative, but I really don’t know how to do anything other than that right now. Any familiar outlet I have to process anger, hurt, and frustration is unattainable. I can’t go get a hard workout in at the gym, or busy myself with work/school, or go grab a drink with friends.
I’m not writing this to get pity or sympathy, but all of these “I can’t” statements are my reality right now. I’m not saying I’ll never be able to do these things, I know I will get there someday, but for now, this is my truth. Brushing over the hard stuff and putting on rose colored glasses may feel nice and give protection from unpleasant feelings, but it is also denying oneself the growth that is discovered in discomfort.
And by now, I know a thing or two about discomfort. I am bearing far more than I can carry right now. And not very gracefully, if I may add. I’m tripping over my own feet, dragging myself down, losing sight of who I am, leaning towards discouragement, and giving into anger and fear.
I’m doing everything I can. Even still, I’m broken.
Every year my friend Kamryn choses a ‘word of the year’ to work on, meditate on, and intentionally live into. This year I felt drawn to the word ‘Rebuild’ and decided that was my 2020 word.
That seemed really nice and cute. I’m ready to take back what Lyme has taken from me and rebuild my life in a healthy, happy way! Yeah!
But then I realized that ‘Rebuild’ is only 50% of the equation.
The other half is brokenness.
In order to rebuild, you have to first let brokenness in; allow it to tear you down, break your heart, piss you off. Let it do its job so there is room for restoration.
Life is a constant cycle of breaking and rebuilding. As Christians, we are called into a life of ‘dying to self’ so that we can be reborn in Christ. Matthew 16:24-25 comes right after Jesus foretold his death and resurrection; he is telling his disciples what a life following Him looks like. It says, “If anyone would come after Me, let him deny himself and take up his cross and follow me. For whoever would save his life will lose it, but whoever loses his life for my sake will find it.” To die to oneself is to set aside our wants and desires, focusing our eyes on God and moving away from self-centeredness. This doesn’t happen just once during Baptism, but everyday thereafter. The Christian life is a constant state of dying to self and living for Christ. Pride often stands in my way of doing this, and for me to move away from my self-importance I have to recognize my brokenness, and thus my need for God’s grace.
Fighting Lyme Disease is hard (lol, duh). My body and my brain need rest. They’ve been yelling at me to let go, for weeks I’ve needed to loosen my grip. I have an idea of what my life should look like and how I should spend my time, but that ideal is not presently serving me. I’ve held on anyway and have let fear drive me forward. I’ve been scared to surrender to the brokenness that’s been biting at my heels. I haven’t wanted to confront that. I don’t want the pain or uncertainty that comes with true surrender. So I ignored it, grasping for straws and clinging to my own efforts pushing myself further and further into exhaustion and anger.
Eventually enough is enough and too much is too much. When we recognize that our human efforts and stubbornness are only causing more harm, we get our of our own way and that makes room in our hearts for God to do what He’s been trying to do all along. Share our burdens and give us true rest.
But first, I need to give into my brokenness. Not in a sad, hopeless way, but to dig into the growth that accompanies dis-ease. I won’t rush out of the trenches to skirt around the painful emotions or ease the strain.
For I know the Rebuild is waiting right on the other side.
Until Next Whine,