It is again January of yet another year, and while undoubtedly a fair share of you are busy with resolutions and “new year, new me” goals, I’m yet again over it before it has even begun.
I’m just trying to stay alive.
It sounds dramatic, but I’m not one for hyperbole…okay, well, maybe on occasion. But that was a literal statement.
My health insurance has cut coverage for the life-saving medication I need to stay healthy while managing a severe autoimmune disease. It has been about six months. Red tape from my insurance plan, bureaucracy from the insurance company and the employer that administers it, and a busy schedule have made it nearly impossible to see my doctors. I thought I’d be fine until I could get through the busy season and get things sorted. Life (or maybe my overactive immune system) had other plans.
I crashed and burned last month, landing in the hospital with what we were concerned was a stroke. It was blessedly just a severe migraine (and for some context, my migraines regularly leave me unable to walk or talk for days at a time due to more than just the pain, and that doesn’t scare me, so this one was really bad).
When you have multiple conditions that independently raise stroke risk, you can’t be too careful with new severe symptoms and sudden onset. The entire medical team at the hospital assured me that I made the right call despite the cause not being life-threatening. But the reason for the severity of the episode was far from benign.
Low blood sugar from lack of food intake. Dehydration because I can’t keep much in my system, including water. Fatigue and confusion fueled by…well, a literal lack of fuel, topped off with a healthy dose of systemic inflammation and a dash of internal bleeding for good measure. I’m already the frazzled mom. The overworked mom. I’d gladly not be the sick mom, too.
They say to be grateful for what you have and that it isn’t worse. I’m not there at the moment. They can walk a mile in my shoes and get back to me; thank you very much.
But grief over health issues is a funny thing. It waxes and wanes. Sometimes, I feel like I’ve got it all figured out; then, I watch my kids crying hysterically, asking if I’m going to die while awaiting the paramedics. Just like that, I’m back in grief and mourning for my kids because they deserve a healthy mom. Because I feel like an awful parent because they deserve better.
I won’t lie; I have selfish moments when I want to give up. Of course, the idea of doing that makes absolutely no sense because even if I did, I would probably have a solid few years of agony before this did me in. Also, there is no reason to give up other than that I’m already frazzled and tired and don’t want to deal with another hassle.
I know it is dark, but while I may be a mom, I’m still a human being who gets fed up from adulting sometimes…especially when the payout seems so small. You mean I’ll still be super sick after all that work? Nah, just let me nap, thanks. But my kids would probably be more upset over a dead mom than a sick one, and like they say, it could be worse.
I recognize how self-indulgent it is to think of any of these things (however fleeting those moments are when they do happen). Still, if the past few months have taught me anything, it is that I no longer have patience for anything short of raw honesty when it comes to my health. And heck, maybe it’ll resonate with someone out there. You might as well be honest about the deepest, darkest thoughts, however awful they are. It isn’t pretty. But it is real.
Despite those dark moments, I believe my life is worth living, and even more than that, I adore my kids. There is no way I’m giving up, even if sometimes it is only for them that I have the energy to keep going with the constant headache of being alive every day (pun not intended, but it fits…though I didn’t have one today!).
Thankfully, most of the time, it is more than just my kids that keep my head above water. True, there may be a fine line between hopeless depression and the jaded, burnt-out existence of the chronically ill. And it is easy to fall into depression, especially when dealing with chronic illness.
I’m grateful I’m not there right now (if you are struggling with depression, there is no shame… please get help; I promise it is worth it, speaking as someone who has been depressed). Right now, I’m just sick of being sick. I’m jaded and burnt out, but not hopeless. Between scientific advancements, my faith, and being completely bullheaded, it is hard to get me to a place of utter hopelessness (well, at least in the absence of my serotonin deciding to go on strike).
So I fight on. I’ll return to the revolving door of specialist appointments, bloodwork, new medications, and surgical procedures. I’ll be on the phone for hours trying to navigate our broken healthcare system, forcing fluids, and trying to stay awake on days when the fatigue drags me back to bed. I’ll be balancing symptoms and side effects, pain, and productivity.
But in that exhaustion, there will be moments of joy—holidays, birthdays, vacations, family hikes, and quiet cuddles with my littles. Those are the things I keep showing up for, no matter how burnt out. They make every moment of agony worth it.
