Some days on the journey with Lyme Disease are harder than others. It’s all up and down, which makes feeling stable something to be desired, but not grasped.
It’s interesting how different our experiences with Lyme Disease may be. For some, just leaving the house to go to the grocery store is a major victory (that’s been me!). For others, they homeschool 4 kids and remain active in church. Others may work part-time but spend every minute outside of work resting. Chronic Lyme Disease can be a debilitating illness that affects each of us differently.
But, one thing we all seem to have in common is that symptoms come and go. They increase and decrease. The pain migrates to various parts of our bodies. There are flares and Herxheimer Reactions.
While in the midst of difficult symptoms, I am aware of what is happening with my body. I know the pain is bad and I begin to get used to it. It’s somehow expected as I wake up each day.
However, if I have a few “good days” in a row (good is all relative…), I begin to be shocked or discouraged when symptoms increase, either by flare or Herx. I may have started out content on the difficult days, but when good days come, they bring a glimmer of hope for more better days. Then, when a good day is followed by a bad day, I grow more depressed about my current situation.
That’s why prayer must be the first thing I do when symptoms come on stronger. I have seek God in it before I allow my sinful nature to take over. My tendency is to grow bitter and become angry, but I know that letting my mind engage in that kind of thinking is never helpful!
The process of healing from chronic illness (or at least getting to a place of stability) has gone nothing like I thought it would.
About fourteen months ago, I was officially given names for the host of symptoms that gradually led to the debilitation of my body. I saw various symptoms come and go over a period of five years, but it wasn’t until February 2016 that my health began to decline to the point where I needed serious help to get better. By the time of diagnosis, I was exhausted, in constant pain, unable to function at work, and deeply depressed.
For some, receiving test results that pointed to multiple conditions and food sensitivities would be devastating. But for me, it provided a glimmer of hope. I finally knew what I needed to treat so I could move forward toward better health. I had a plan for healing, and I love plans!
In my typical Type A fashion, I followed my doctor’s treatment protocol to a T. This meant giving up all my favorite foods and focusing only on the things I needed to get better. I had to quit my serious Reese’s Peanut Butter Cup addiction and instead fill up on Vegan Chocolate Shakeology and a (mostly) Paleo diet.
My health protocol was overwhelming, sometimes consisting of 60+ pills a day. My weeks were filled with detoxing, sleeping, lying on the couch while listening to podcasts, and working as much as possible to maintain some sense of normalcy in the office and get a paycheck (gotta pay for all those supplements and meds!).
I was doing everything “right” in my journey of healing, but instead of finding stability, any step forward was met with two steps back.
Rest: a key component in healing and keeping symptoms at bay when facing a chronic illness.
We all know we need it.
We likely crave it.
Many times, our bodies won’t let us go without it for too long because there’s crippling fatigue involved in the challenges we face.
However, even though I know that rest is essential in my battle with Lyme Disease, I often find myself unable to adequately rest. Even when I want to rest badly enough that I’d give up almost anything for it, I still fall short when it comes to resting well.
Why is this? How could something so simple be incredibly difficult to actually obtain, especially when I spend the majority of my time in bed (the place where rest is supposed to happen)?
When I was first diagnosed with Lyme Disease, I felt lost and alone. My health had deteriorated to the point where I barely left my apartment. I only went out for work (on days I could make it in) and food.
Each day, I tried to muster up enough energy to get things done to care for myself, but it was never actually enough. Those days were dark. I was pushing, trying, and feeling like I was in a pit that I’d never be able to climb out of. It felt like nobody else understood.
But, one day during my lunch break, I came home to make a protein shake and found a pleasant surprise waiting for me.
My dear friend, Rosie, had sent a care package.
That care package was exactly what I needed at that moment! The care package told me that I had a friend who cared, who understood, and who loved me. Even if she didn’t know exactly what I was experiencing each day, she wanted to show that she cared. It meant the world to me!
I opened that care package and cried. It included an assortment of things: from healthy snacks, to a journal, to a neat travel cup, to a sweet card.
Even though my situation with chronic illness was less than desirable, that care package brought a smile to my face just when I needed it.
Living with a chronic illness, where each day is a battle, can wear on a person. Those with chronic illnesses have to manage a lot! Finding relief from symptoms while facing a chronic illness includes far more than just a little extra rest.
For many people I’ve met in the chronic illness community, their treatment protocols have included dietary changes, an extensive list of supplements and prescription medicines, detox methods, rest, exercise, prayer, meditation, use of essential oils, and more. There’s often a mix of traditional and herbal treatment. Because each person’s body is different, the treatment that works for them will be individualized, even if they have similar conditions. It’s a matter of trial and error until they can find the right system.
I’m at the place in my treatment of Lyme, co-infections, Hashimoto’s Thyroiditis, etc. where I am worn down and need serious rest in addition to my current treatment protocol. I’ve been burnt out and depressed, feeling like I’m constantly on the verge of drowning. Stress and feelings of unmet expectations take me into a dark place where I feel like I can’t go on.
Because I’ve felt so terrible over the past several weeks, I’ve been reflecting on what I actually need in order to get better. What I’ve learned through personal reflection and prayer is that the most crucial thing my body needs right now is for me to be kind and give myself grace.