WHEN YOU’RE SICK ON SICK AND SICK OF BEING SICK
Being sick sucks. I don’t know anyone who enjoys coming down with the flu or any acute illness. The upside is that you know you’ll feel better in a few days or weeks…unless you’re already chronically ill.
I’ve had the flu for the last week, and I’m pretty depleted in every way as I write this. But I think sometimes when our guard is down, the most honest and helpful insights can flow. So, here I go…
This is an honest share about what it’s really like to live with chronic illness.
JUST A LITTLE HISTORY IF YOU DON’T ALREADY KNOW…MY OVERNIGHT HEALTH CRISIS WAS ACTUALLY YEARS IN THE MAKING
My “overnight” crash into chronic illness was likely years in the making, starting from years of elite gymnastics while overtraining and underfueling. The concept of rest terrified me because I feared losing my edge if I backed off even a little. So, instead of resting after I tore my ACLs and rotator cuff and had a hemangioblastoma removed from my spinal cord (all at different times), my anxiety kicked into high gear, and I doubled down on whatever exercise I could do and limited calories.
Fear always kept me driving through despite what my body was telling me.
The years following my gymnastics career were no different. I pushed through immense anxiety throughout PA (physician assistant) school, joined the Army, had a bad reaction to the Anthrax shot while deployed to Iraq, and began to notice I couldn’t do what I used to do, which was ignore my body and push harder.
My body started pushing back and hard. I tore my calf running, avulsed my rib climbing a rope, and would randomly be in bed for three days, so exhausted I couldn’t go to work.
After getting married and moving halfway across the country, I got pregnant, and after a long and traumatic labor and delivery, the “shit hit the fan,” so to speak.
My body was really not feeling right, but I went back to work part-time when my son was 3 months old. I rode my bike home from work one day, pushing myself up a very steep hill that I had traversed hundreds of times. When I got home, I was very short of breath and felt a kind of weakness that felt different from the pleasant fatigue after a good workout.
The next morning, I woke up and thought I was dying. I know it sounds dramatic, but it’s true. I had such immense air hunger (that feeling where you try to take a breath and just can’t get the air into your lungs.) My muscles felt like popcorn popping, and I could see the fasciculations beneath my skin. I would take a bite of food, and my entire body would buzz with this chemical surge of histamine, adrenaline, and who knows what else.
It felt like a living hell in my body and there were no answers as to why.
12 YEARS IS A LONG TIME TO BE SICK
This was 12 years ago, and the rollercoaster ride continues to this day. Over the last 12 years, I’ve seen more doctors than I can remember and spent thousands of dollars on supplements that don’t help. I have inconvenienced my husband or friends by having them drive me to appointments because I can no longer drive very far.
I am improved from my bedridden state when this all began, but I still live in a body that experiences more pain and suffering than it does joy and comfort…by a long shot.
And then when I came down with the flu this week, it has just taken me down hard. Interestingly, I don’t get typical colds or viruses very often. I just live with a daily feeling of intolerance to life because of my nervous system’s lack of capacity to take on much stress.
What really sucks is that I know once this passes, I'm not going to feel well. I’m just going to feel less bad. Right now, the occipital neuralgia that feels like a hot spear being driven into the base of my skull is really bad. I know it won't go away when I feel better. It may just feel like a cooler knife stabbing me in the back of my head.
The relentless fatigue preventing me from standing more than 10-15 minutes will get better, but it’s not like I have a good long walk or workout to look forward to.
On a positive note, at least the cough and congestion will resolve. I don’t have to deal with that on a daily basis. I guess when we live with chronic illness, we have to find the positive in unorthodox ways…”well, at least I don’t have a cough every day.”
I’M SICK ON SICK AND SICK OF BEING SICK
This term, “sick on sick,” is one I learned from a fellow chronic illness warrior who is navigating the extreme loss from Long Covid. When we’re already sick, and then we come down with a virus or bacterial infection, it’s like adding insult to injury. It’s like being kicked when you’re already down.
I’ve often explained the last 12 years of my life as if I’m out in a torrential storm in the ocean, treading frantically just to keep my head above water. Every day with chronic illness is already exhausting (i.e treading frantically in the ocean), and then life happens (i.e the waves overpower you, and you begin to feel like you’re drowning). Others get sick, so we have to take care of them. We get sick and have to rest even more than we were before and feel even more disabled than our baseline.
As a mindfulness meditation teacher and functional medicine practitioner, I do like to keep an open mind to things getting better for myself and other chronic illness sufferers. But I’m not going to sugarcoat how this experience is…it fucking sucks.
It’s so hard to continue to find meaning and purpose sometimes when much of life feels so awful. Imagine trying to do your regular day-to-day activities with a knife jabbing in and out of your head. Or imagine having to carry an extra 30-pound rucksack around doing everything; this is how we can feel sometimes when we have overdone things and have post-exertional malaise, or PEMs, as we all know it. Our muscles feel like we’ve done an intense CrossFit workout or hiked a steep mountain when maybe we just walked down the street or drove ourselves to the store.
It’s really, really hard to handle sometimes.
IS RECOVERY EVEN POSSIBLE?
With all of this, I do try to remember Jack Kornfield’s words, “Suffering isn’t the end of the story.”
I had a sweet individual reach out to me recently asking what I meant by the tags on my blog, “chronic illness recovery.” This term didn’t sit well with her because, for many, recovery may never happen. I reflected on this inquiry, and it brought up some sadness, but it also connected me to why I do what I do.
I’ll be the first to admit that I question the possibility of a full recovery, especially when I’m sick on sick or just having a hard time. In my lighter moments, however, I can see that, although recovery may not equal “cure,” we can recover in a lot of different ways. Just as we may recover something that was lost, chronic illness may force us to let go of the layers of conditioning and recover, or maybe a better word is rediscover, our wholeness, even within the “whole mess.” (This is a reference from Jeff Foster’s poem “If Abandonment is the Core Wound.”)
We may recover our ability to notice moments of peace and ease, and enjoy the beauty of the smallest yet sweetest moments. We may recover our ability to forgive ourselves and others, to offer compassion to ourselves and all of humanity, and to connect with an authentic, loving presence.
With so much time on our hands, we may recover our capacity to think for ourselves, question societal norms and injustices, and inquire into what makes life truly meaningful.
So, recovery is multifaceted, and we’re ultimately recovering the truth—the truth that life is filled with immense sorrow but there is also immense compassion to hold that sorrow; the truth that life is filled with painful loss but that there is infinite love that can never be lost; the truth that we don’t control a lot of things in our lives but we can control what we place our attention on and who we surround ourselves with; the truth of impermanence as we see our independence and physical comfort hijacked by illness but also recognize within that same impermanence are infinite possibilities, one of which may include improved health someday. And even if that doesn’t transpire, our recovered insight and wisdom can guide us toward a more aligned life, one that allows our existence to hold deep meaning, connection, and purpose.
my final thoughts
If you can relate to this post, I have to start by saying I’m really sorry. This means you’re traversing the deeply painful path of chronic illness or you are supporting someone who is.
I also have to say, I see you.
I see your strength.
I see your suffering.
I see your plea for health and wellness again.
I see your determination.
I see your unrelenting pursuit to find answers.
I see your kind and loving heart.
I see your justified frustration, rage, and confusion.
I see your beautiful spirit that far exceeds the limitations of illness.
And in closing, here are my well wishes for you:
May you be free of suffering and feel comfort and ease.
May you feel held and healed in truth and understanding.
May the strength of spirit carry you always.
May you feel free in body, mind, and spirit.
Many Blessings,
Theresa
Theresa Kulikowski-Gillespie, PA-C
Theresa is a functional medicine physician assistant, mindfulness meditation teacher, author, and owner / founder of My Mindful Medicine. Theresa is also an army veteran, military spouse, mother, and former elite & collegiate gymnast.
