Dealing With Seasonal Sickness as a Person With Ehlers-Danlos Syndrome
I am sick. Specifically, I have a cold. I’ve had it for about a week now, with no end in sight. It’s the type where I almost completely lost my voice, am hacking up copious amounts of phlegm, and should probably just have my paycheck direct deposited at CVS due to the incredible amounts of cold medicine I’m purchasing.
I am also ill. Specifically, I have Ehlers-Danlos syndrome hypermobility type, mast cell activation syndrome, and Chiari malformation. Because of my chronic invisible illness conditions, having a cold isn’t just having a cold. The Mighty has an excellent video about the difference between someone who is sick and someone who is chronically ill. Watch it here. It’s even more complex — and the difference even more glaring — when someone who is chronically ill gets sick.
Take the fatigue. Both of my chronic illnesses come with the fun side effect of often crushing fatigue. I’m slowly learning tricks of how to manage it, through good diet and nutritional supplements. Doesn’t take away my fatigue, but does make it manageable.
But I get a cold, and all the good from that management goes out the window. All my body wants to do is rest — not just the normal rest it always craves, but on top of that, rest to try and fight off this cold. I am double exhausted.
But I can’t just sleep all the time. I am determined to be stronger than my chronic illness (while still taking the necessary self care steps so I can triumph over it long term: a really hard balance!). Have you seen the DayQuil “No Such Thing as a Sick Day” ads, where the mom or dad walks into their baby’s room and tells the baby they’re taking a sick day? Tagline: “Moms/dads don’t take sick days.”
Well, that’s just it: I am a mom, and want to be as present as possible in my daughter’s life. I’m also a working mom. My job is more than just a job to me: it is my calling, my passion, and so I am dedicated to showing up there, even on the hard days (as long as I’m not super contagious!). So what happens is that my life becomes sleep, medicate, work, kid, medicate, sleep. There is no time or energy for anything else. We are talking full-on survival mode.
And then there’s the pain. Oh, the pain.
Because of my faulty collagen, I often get chest wall pain and inflammation, also called costochondritis. Now I have a cold that almost immediately moved into my chest. But it’s not just those two pains on top of each other, because the cold actually makes the inflammation and chest wall pain itself worse, so it’s double that pain plus a distinctive pain from the cold.
It also means I seem to injure a lot easier. My legs and hips have even more bruises than normal from things as simple as playing with my daughter. I feel so fragile. And subluxations happen a lot easier too. I subluxed both my shoulder and one of my hips this weekend, even though I was in bed for much of it!
All of this leads to the painsomnia: insomnia caused by pain. I’m exhausted (see above), but can’t sleep because of the pain. What a vicious cycle!
It also seems to take forever for me to get better. When my husband and I get the same cold, his is done in half the time and is much less severe — but he is not chronically ill.
Eventually, even though it doesn’t seem like it here in the thick of it, my cold will go away. My chronic illnesses, however, are here to stay. This reality can be very hard for me to think about sometimes.
The positive side is part of what I’m feeling will definitely get better. The cold going away means I’ll return to the “normal” of my regular chronic illness management. I won’t just be in survival mode. I’ll still have fatigue, but lesser. I’ll feel more like thriving than surviving.
But… there’s also always the reality that I will never get fully, or really even more than half, better. The cold will leave, but chronic illness is here to stay.
I am lucky, though. I have other things that won’t go away like seasonal sickness: namely, an incredible support system. My husband is my rock. He takes on extra daily just with my chronic illness, and so much more when I’m sick on top of it. I try to express my gratefulness as much as I can. I have amazing family and friends, both near and far. I have people I can always complain to who always are empathetic and here for me. I know many do not have this kind of support system, and I try my best never to take it for granted.
I also have a job I love. When I am there, I don’t feel sick most of the time, because I am in my element, doing work I am passionate about. And I also have my daughter. She brings so much sunshine to my life, and I wouldn’t trade getting to be her mama for anything.
So is being chronically ill and seasonally sick at the same time a very significant challenge on my life? You bet it is! At the same time, I know that I have a strong support system, hot tea, a great job, a beautiful daughter, and my faith that keep me pressing through daily — even on those “survival mode” days.
This blog was originally published on Writer Kat.
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Thinkstock photo by cyano66