The Cost of Trying to Stay Out of the ER
September has been a lot.
I have been to the ER more than once recently for basically the same thing. My heart rate gets too high, I get dehydrated, I start feeling unstable, and eventually I reach the point where trying to fix it myself at home is not working anymore.
Then I go to the ER, get fluids and steroids, and usually feel significantly better. Which is great, except obviously I would prefer not to wait until I am sick enough to need the ER.
So lately I have been spending a lot of time trying to figure out what keeps me from getting there in the first place.
Trying to Stay Ahead of It
More salt. More electrolytes. Paying much closer attention to hydration. Adjusting medications with my doctors. And sometimes paying for IV fluids myself when I can tell I am heading in the wrong direction and cannot seem to catch up. That last one has been especially frustrating.
I understand that getting an IV at a wellness clinic is not the same thing as receiving medical treatment in an emergency room. I also understand why healthcare does not work as simply as, “This helped me, so insurance should cover it.” But it is still a little maddening to spend hundreds of dollars trying to stay out of an emergency room that would cost significantly more.
I am not saying IV fluids are the answer for everyone with Addison’s. I am not even saying I have completely figured out what the answer is for me. I am just trying to figure out what keeps me stable. And lately, stability has felt harder to come by.
The strange part is that this starts affecting things that have nothing to do with being actively sick. It starts showing up in completely normal things like taking a shower, working out, getting through a busy day, being outside when it is hot, having a drink, or planning a trip to London.
All of those things now come with this quiet background checklist:
Have I had enough salt today?
Am I drinking enough?
Is my heart rate higher than it should be?
Do I need more medication?
Am I just tired?
Am I actually getting sick?
Can I wait this out?
At what point does waiting become stupid?
That constant calculation is exhausting.
When It Starts Showing Up at Work
There is another part of this month that is harder for me to talk about because it is not as visible as an ER visit or an IV.
I can feel it at work. I do not mean that I am not doing my job or that anyone around me thinks I am underperforming. I am still showing up and doing what I need to do. But I care a lot about my work, and especially about being a good leader for my team.
I am used to having that extra bit of capacity. The energy to notice things, think ahead, be fully present when somebody needs me, and still have something left at the end of the day. Lately I do not always feel like I have that extra 20 percent.
Part of my brain is thinking about my heart rate, whether I have had enough salt, whether I am getting dehydrated again, what appointment I need to schedule next, or just how physically off I feel that day.
I doubt most people notice. But I notice. And because I expect a lot from myself, it bothers me more than I would like to admit.
You can still be functioning and still feel like you are falling short of the version of yourself you are used to being.
When Everything Else Feels Louder
I have also noticed that when my health feels unstable, I seem to become less tolerant of uncertainty everywhere else. I worry more. I overthink more. I want reassurance more. I want something to feel settled.
I keep wondering whether other people with chronic illness experience this too. It is not that every anxious thought I have is caused by Addison’s, and it is definitely not that everything I worry about is imaginary. I just think there is something about living in a body that can change very quickly that makes unpredictability in the rest of life harder to sit with.
When your body has taught you that things can go sideways without much warning, it is hard not to stay a little bit on alert. Watching. Waiting. Checking. Trying to stay ahead of the next problem.
And if I am being honest, I think lately I have wanted one part of my life to just feel easy.
And Then There Is Everything Else
Meanwhile, my body has apparently decided that Addison’s was not enough to keep me busy.
I had to get some dental work redone this week. I am going to NIH for an Addison’s research study. My celiac symptoms and bloating have been flaring again. My condo flooded a few weeks ago. And I am trying to figure out the best way to prepare my body for London next month.
I sent my family a text with all of these updates and ended it with, “I think that’s it for now 🙃.”
Then I looked back at what I had written and laughed because it was an objectively ridiculous list. This is honestly why I keep a lot of it to myself.
Managing a chronic illness is exhausting. Explaining everything you are doing to manage a chronic illness can somehow feel exhausting too.
And there is not always one huge medical thing happening. Sometimes there are just a dozen small things:
Appointments and prescriptions
Blood pressure and heart rate
Salt and electrolytes
Medication changes
Insurance and bills
Figuring out whether a symptom matters
Figuring out how long to wait
Figuring out when waiting becomes a bad idea
Then regular life keeps happening around all of it.
There is still work. There are groceries and laundry and dentist appointments. There are pets who suddenly need to go to the vet. There are trips I want to take, Pilates classes I want to go to, people I want to be present for, and completely normal things I still want to care about.
The Part That Is Hardest to Explain
I think this is the part of chronic illness that is hardest for me to explain. Being sick is not always the dramatic part. Sometimes it is just the amount of administration required to keep yourself functioning. It is a whole job to manage my body sometimes, except it is a job I do on top of my actual job and the rest of my actual life.
I do not have some big lesson from September. I am tired, I am frustrated, and I would really like my body to calm down for a while.
For now, I am trying to figure out what helps, what does not, what is worth paying for, and how to keep living normally in a body that requires an unreasonable amount of supervision.