If You Are Asking 'How Do You Do It?' When It Comes to My Lyme Disease
It’s been no secret that I’m battling several chronic and autoimmune illnesses. I share a lot of my journey of my battle not only to remission, but my journey in accomplishing my goals in life in the midst of it all. I share my victories, from the really small ones to bigger ones.
But I also share the ugly parts of life with chronic and autoimmune illnesses. I share my defeats, from losing my ability to walk for a second time, to getting re-infected with Lyme disease and co-infections. I share the depths of my struggles in hopes to raise awareness and somehow make a positive impact.
In doing so, people are generally left flabbergasted with what I’ve been going through. It’s without a doubt difficult for anyone who is healthy to understand what it is like to live with constant illness. They say they don’t know how I do it, which leads them to oftentimes ask some form of this question: “How do you do it?”
My daily life consists of pain that I cannot control, immeasurable fatigue levels, and intense weakness…all very abnormal things to the healthy individual, yet this is “normalcy” for me as well as many others with chronic illnesses of all kinds.
“How do I do it?”
At first, I wasn’t sure how to honestly answer this question, and at times, I truly don’t know how I continuously adapt and prevail.
But then I realized it’s actually simple — I do it because I have no other choice.
I do it because I have no choice but to face my multiple adversities that are my chronic illnesses each day, with no knowing when they will ease up or when remission will happen. People tend to forget that the definition of the word “chronic,” according to the dictionary, means “persisting for a long time or constantly recurring.” There is no telling how long this will last, if or when it will get better completely, or will remain something that is continuously managed as life goes on…
And life does indeed go on. I do it because I deserve to have a shot at being in remission. I don’t remember what it feels like to live without aches and pains and severe fatigue. I don’t know what it is like to go to sleep without pain and wake up without pain. It becomes a “norm” for chronic illness warriors to be in a constant fight-or-flight mode — constantly teetering on the edge of delicately managing symptoms, not knowing when the next big flare or setback will be, trying feverishly to do all that is possible to prevent that and reach the overall goal of remission.
I’ve dedicated myself to a mission to remission, with hopes I will be able to experience what that is like someday.
I do it because I deserve to live a life I had always dreamt of, which is a life that my illnesses continuously attempt to deter and destroy. I do it because I want to be free from the shackles that are my chronic illnesses; to live and walk and run and dance. To live beyond the limits that my chronic illnesses set. To live without consequences for living. It is difficult and it seems impossible; but if I continue to fight regardless of the circumstance I face, I am possible.
This most recent downfall of my health has consisted of days that are spent laying on the couch. The exact same side of the couch. I haven’t slept in a bed in over a month. But I fight like hell even while I’m on that couch. I fight 24/7, even during times where my body, mind, spirit, and strength of my faith are tested and pushed to extremes and beyond limits I didn’t know existed, all by the insidious depths of hell these illnesses create.
In moments of such physical distress, I say things I don’t really mean out of frustration, as I am not in control of shutting off the countless symptoms that are all ravaging my body and occurring at once. There is no option to pause or stop. In those moments of helplessness, every fiber of my being wants to throw in the towel. But I can’t. I don’t. I won’t. I refuse.
Some days I’m so physically sick that I’m only able to wheel myself to go to the bathroom. I am still physically learning and trying to adapt to such high pain and fatigue levels that render me inert. Yet even then, I am still “doing.”
I am still fighting on these days; the ones in which I will lay there with tears that spontaneously stream down my face, fading in and out of sleep as the day passes me by. I simply cannot physically push myself and go above and beyond like I normally do. But yet even then, I’m still “doing”…I fight like hell.
Other days, I find myself in eight, nine, even 10/10 pain that intensifies throughout the day. I find myself wondering how I will push through the day. There are moments I feel like I will break down from the overwhelming load of symptoms my body is enduring.
But I will continue to fight like hell. I will read and study to keep my brain strong. I will exercise my upper body to maintain and build strength. I have a steady list of short-term and long-term goals that per usual for me, are far fetched for someone this sick. The amount of energy to muster up to complete these simple tasks all while harvesting such an inner-hope fighting for an uncertain future is nothing short of unexplainable to those who wear the crown of health. Some days our illnesses strip us and reduce us to close to nothing, yet that inner hope is all we have to get us through those days.
Pain and hope are my biggest teachers. Two total opposites have taught me to persevere. I am relentless. I am resilient. And I am a fighter. I am a fighter in a battle against a body that wishes to do nothing but destroy me. I have fallen countless times throughout my journey; but am I supposed to lay there and let it consume me?
“How do you do it?”
I have no other option but to fight like hell. I can’t just shut down and stop trying. I can’t just stop fighting, and even on my worst days I am still clinging on, fighting like hell.
Healing isn’t linear — there are a lot of twists and turns, short periods of “ups” followed by the inevitable downward spirals and plot twists. Healing is a process…a messy, challenging process. But sometimes in life when you are given these challenges, you must say challenge accepted.
This means sometimes taking five steps forward followed by ten steps backwards.
It means making multiple attempts, and at times I need to ask for help each day to complete tasks that should be simple. It is a challenge that consists a long, difficult climb up the mountain to get to remission. There aren’t any shortcuts or any easy ways out. I will be doing myself a major disservice by quitting or not making small efforts each day that will ultimately all add up to contribute to the big picture of what will be my “view” once I get to the top of that mountain.
Life stops in a sense when you have chronic illnesses. But I just can’t stop. It simply isn’t an option. It isn’t an option for me, and I hope it wouldn’t be an option for anyone else that is still reading this. You never know how strong you are until being strong is your only option.
There’s so much I want to do. There’s so much I want to accomplish. There’s still so much I want to experience that I have never had the privilege to because of my health. I have fought in the past so I can fight right now in this very moment today, which will bring me to my future. For all the tomorrow’s that are God willing to come.
There is no quit in my hours of despair from unrelenting illness. Every ounce of pain and exhaustion my body endures, every tear shed, moment of doubt and frustration and agony is going to be worth it someday.
This is how I do it, and this is how I will continue to do it.
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