I’m sick. It sucks and I am whiny and bitchy about it. I want to curl up with my cats and/or my boyfriend and sleep until I feel better. I, of course, can’t. The world doesn’t stop turning just because my lungs (and ears and nose) don’t want to work correctly. So, I push through. Sometimes, I push too hard and end up making things worse. What was minor is now major and I’m laid out flat, trying to think straight, trying to decide if a ER trip is worth the bills or if I can just pull through with my emergency inhaler.
IgG Subclass Immune Deficiency. Hypercalcemia. Asthma. Malformed sinuses, weak inner ears, tonsils that had to be removed when I was six, Endometriosis stage IV, Anxiety, PAD/PTSD, the laundry list of “what’s wrong with me” goes on and on. With all the health problems I’ve had, being a spoonie is a part of my life (don’t know what a spoonie is? Click here.). I know exactly how many spoons it will take to do homework, to sketch, to game, to exercise, to get groceries, to shower, etc. I’ve lived my life like this since I was born. Whether it was my asthma, my immune deficiency, my kidneys, my sinuses, my endo…I was always anticipating a low-spoon day. These last few months have been a blessing, though. I’ve only had (not the counting past week) one or two days were my spoons became concerningly low. I found a routine, I’ve been sticking to it, and I’ve been careful to push myself only to my limit – not beyond.
And then I did something kind of stupid. I used fabric softener in some laundry loads. Usually, I only use it with towels and blankets – things that get stored and need that extra boost of scent to keep from getting musty. My clothes are all washed in detergent only, and even then it’s the unscented stuff. It’s more for personal preference than anything, but my skin is used to a lack of fragrance in my clothing.
My oversight led to an eczema flare all over my torso and arms. No big deal, just a little itchy, but since I was starting to lose sleep I figured a trip to the doctor was in order. After all, I couldn’t afford to get sick because I wasn’t giving my body enough time to repair itself during my sleep cycle. Cue the steroids to take the swelling down so my skin could heal.
During the five days of the low dose of prednisone, my immune system (though no longer so bad that it falls into ‘deficiency’ status like it used to, but still on the very VERY low side of normal) took a hit. Everyone around me is sick right now -so of course I got it too.
I was so tired and feverish I could barely think straight. My throat had knives in it and my ears had exploded. I cancelled my lessons and made it through teaching my Comp class barely. I spent a grand total of an hour out of bed. By that Tuesday, I was so sick that my teacher actually sent me home. For those of you who aren’t graduate students, missing class is a much bigger deal now than it was in undergrad. I ended up only teaching, and even then I was barely squeaking by. I missed all of my classes – thankfully my teachers were understanding.
What started as a minor cold (I’d been fighting it long before the eczema flare) became much more complicated. Mucus started settling into my sinuses and lungs. My ears were plugged and I was struggling to hear even the loudest of Sophie’s cries for food (don’t worry, she’s well-fed but likes to pretend she isn’t). My peak flow was dropping by the hour and my emergency inhaler wasn’t doing me any good. My fever would break and then spike to 102. I was pretty miserable.
And yet this level of illness is far from unusual for me. I’m actually pleasantly surprised it took me this long to get this sick. I decided, after my peak flow dropped into the warning zone, to head in to the doctor’s office.
Now, I’m halfway through a long course of oral steroids and two rounds of antibiotics. In my state, I hadn’t realized just how bad I had gotten. I thought I was only a little sick – turns out I should have been in bed 24/7. Thankfully, I’ve improved quickly.
Monday and Tuesday were great – I wasn’t back at 100%, but I was much better. I was incredibly productive on Tuesday, and pushed myself as hard as I would if I were in normal health. This meant long hours on campus, teaching, classes of my own, writing, cleaning, socializing…a busy day even for a non-spoonie. I should have known better. I woke up Wednesday with my fever back and feeling as if I’d been run over by an especially mean train. My spoons hadn’t just been depleted, they’d been yanked out of my hands completely. I was late to my class that I was teaching (a first, which concerned quite a few of my students) and begged for mercy from my teacher for my grad class later that day. Less than an hour later, I was home, in bed, fast asleep.
As I’m writing this, I’m still not doing so great. I am better than I was (50% today), but I have a ways to go before I’m actually “better.” My fever is down and my lungs are clear, but I’m still fighting an uphill battle with my ears and nose. Everything hurts and a large part of me feels that the only answer is crying in fetal position in a corner.
That’s the thing about being a spoonie – we don’t have the luxury of taking real “breaks.” Sure, we can vent and complain to other spoonies and our loved ones, but for the most part we have to push through knowing that people who don’t have chronic illnesses will never fully understand. Vacations, time off, whatever you want to call it, are all saved up for the days when we have no spoons – and still it’s sometimes not enough. Breaks, real breaks, are rare for us. We don’t have the days to spare to just read or game or take a mini-vacation. Hell, we don’t have the spoons to spare for those activities half the time.
But that’s where I find the silver lining – in the fact that I don’t have free-time the same way non-spoonies do. My free-time is limited and precious, meaning that I have to be truly devoted to the people and activities I choose to spend my time with or on. If you are a part of my “free time,” (even if I only see you a few times a month, or even less) it means I value you far more than I could ever really express. Taking the time to game or draw or write becomes even more important because the time I have with my hobbies is so rare.
This rarity brings me to the reasons I’m keeping this blog – awareness and a bit of an outlet. First, talking about my illnesses (even if it’s just a lot of bellyaching like this post) makes them less taboo. Some of my chronic issues aren’t that stigmatized (sinus issues for example), but some are (mental illnesses like PTSD) or are relatively unknown (Immune Deficiencies and endometriosis). Second, this space becomes a spot for folks to learn they are not alone, their struggles do not have to be undertaken in solitude. Sure, I can get whiny, but the point is that it’s okay to get whiny or fed up or angry or any of the other emotions that doesn’t fall under the “inspiring sick-person” persona that so many of us spoonies feel like we have to live up to. The emotions we experience are valid (yes, even the negative ones) and it’s important that we are there to support each other.
So, am I bitching and moaning? Yep, I certainly am. But it isn’t without purpose (otherwise I would just put this in my diary rather than publish it to a public forum). Rather, I want to be a part of a community where it’s okay to have the occasional “bitchy, moan-y” day because we, spoonies and non-spoonies alike, understand that we are not perfect little angels. Some days, we just don’t have enough spoons to be angelic.