Can we talk a bit about chronic illness?

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Specifically, acid reflux. I want to talk about my reflux.

I’ve been holding back so much from my public life. I’ve stopped blogging here almost completely because I always feel that any post here has to fit my “brand” — whatever my brand is. I think the problem became me trying to fit myself into some mold I’m not; trying to always be camera-ready, even in my writing.

When I first started blogging I talked about everything that was going on in my life. I didn’t hold back. Over time I decided there were some things I’d prefer to keep private, but generally I still blogged about my life. And then I became a writer, and suddenly I needed a writing blog.

I’m tired of this. I’m tired of feeling like every post here has to relate somehow to writing or reading or literature or just “My life as a writer” as if that is separate in any way from the rest of my life. I’m tired of feeling like there needs to be a theme for my blog. There is a theme: me. There is a brand: a genderqueer, disabled, chronically and mentally ill writer who tries to pen books when zie’s not feeling like absolute crap, and who has fucking had it with the stigma around talking about one’s illnesses.

So today I want to talk about reflux. Warning: this post will contain some graphic description of the effects of acid reflux. Not recommended for emetophobes.

I have not always had reflux. I used to get it occasionally, often after eating too much greasy food (burgers, fries, whatever you can get at Denny’s, basically) late at night, right before bed. I’d wake up sick, unable to breathe, and would find no relief until I vomited out my dinner. Usually it was almost completely undigested.

But generally, I had an iron stomach. I could tolerate most foods. I loved Indian food — I still wasn’t much for really spicy things (my mouth didn’t enjoy them while my stomach didn’t seem to have an opinion), but the milder stuff like butter chicken? Heaven.

About six years ago I started getting reflux more frequently, and about four years ago it basically skyrocketed. I suppose it could have started a bit before that; I didn’t know it was reflux, however, until I met my husband and he told me about his reflux.

The joke now is that he gave me his reflux, because in the past 6 years I have gotten steadily worse while he’s almost reflux-free at this point. (This isn’t true; he’d been improving since before we met. But the thought makes me laugh.)

What I actually think happened, insofar as I can figure anything out, is in 2012 my spinal injury flared up and I became bedbound for several weeks, having to relearn how to walk again. A side effect of this was I had to change my sleeping position. I had always been a stomach sleeper, and as a fat person with a big belly, “stomach sleeping” included twisting a leg up to give me some support so I wasn’t lying on my stomach directly. This, my physiotherapist explained, was terrible for my spine, and I needed to move to my side.

I did, and now I can no longer sleep in any other position. For my back to even function, I must sleep on my side, often with my knees bent to help support me. This means I now toss and turn more than before, as my arms and hips can go numb in this position. But I cannot sleep on my stomach, and sleeping on the back would require about 50 firm pillows in special arrangement, and even then I don’t think it would work.

That is when the reflux skyrocketed in occurrence. Now instead of a once a month or less thing it became once a week, then twice a week, then three times and finally daily. I’ve had daily reflux for…a year and a half now?

And the thing is, while there are a few triggers I know for certain will make me sick (whether it’s in any amount, such as Indian food, or in large amounts, such as tomato sauce), the rest is a mystery. It is Russian Roulette with food: there is often no way for me to tell if something will make me sick until I eat it.

Now, if it were just one type of reflux, I might be able to deal with it better. If it were only the acidic backwash in the back of the throat, the coughing up acid in the middle of the night — it sucks, but it’s about 10x better than dealing with the other type of reflux I get: chest pressure.

If you’ve never had chest pressure, well, it’s horrible and seriously count your lucky stars. When I get it it feels like an elephant is sitting on my chest. I can’t breathe. The only relief I get is by belching, but that relief is miniscule. I’d have to belch a million times to feel better again.

I can’t lie down in any position when I get chest pressure, and I usually get it at night, when I want to sleep. This forces me to sleep on my recliner in the living room, which means I then get a horrible sleep and feel like absolute hell the next day.

(Related to how reflux has ruined my energy levels: I was recently diagnosed with low iron levels in my blood. Basically, I’m exhausted because I’m anemic. The reason for these low iron levels? The fact that I pop Rolaids and Tums like fucking candy so I fend off the reflux and actually go to sleep. Calcium interferes with iron absorption. So the thing I was taking so I could sleep through lessened reflux was sapping my energy because it was lowering my iron levels…isn’t being chronically ill fun?)

Every time I get chest pressure I want to die. It is truly awful. Often, there is no fix for it except waiting it out. Sometimes, things like crackers help. But not by much.

I have it right now, while writing this post.

I am sitting here and thinking “Maybe if I puncture my chest, the gas will escape and I’ll feel some relief.” This isn’t sound reasoning but it feels like it should be. I am full of pressure, and releasing gas offers a little relief. Obviously creating a hole in my trunk will release all the gas, and I will no longer be in so much pain.

I will also probably bleed to death. And I mean, where the fuck would I find something that could even punch a hole that big in my chest? Madness.

Which is what being chronically ill does. It drives you to madness.

Right now I have no clue what caused this bout of chest pressure. I admit, on Saturday, I had some salad. Salad has become my enemy of late; it always causes chest pressure and makes me want to die. Well, salad with Romaine has. But I had a small amount of Romaine on Saturday, and a bigger amount of a kale salad, and I suffered no chest pressure that night or the next morning.

I don’t think it’s the salad. I’ve never had acid reflux from something 2 days after the fact.

It has to be what I had last night or this morning. If it were what I had last night, then I would have felt sick long before this afternoon. If it hadn’t hit before sleep, I would have waked up with it.

So it has to be the lovely post-birthday brunch my mom took me too, which was delicious, and which I’d fucking eat all again godsdammit, even if it means this horrible pain. I mean, maybe the next time I eat it it won’t hurt me. I’ve certainly not had any problems with any of the foods I consumed this morning before, but again: Russian Roulette with food.

This is what madness is: the inability to enjoy anything lest it’s an enemy lurking in the bush, ready to ambush you and sit on your chest till you cry Uncle at which point it will ignore you, because it can.

Every time I eat anything these days it’s with the knowledge that it could cause me terrible agonizing pain later. And still I eat, because I need food to live, because I battle eating disorders that tell me I’m not worthy of life and therefore food, because I’m fucking hungry, because it looks good. I eat because that’s what humans do, and I just have to brace myself for the possibility that this meal tries to kill me with pain.

This is the part where someone chimes in that I should be on medication. I am. I’m currently taking a proton pump inhibitor. Before that I was alternating between Zantac and famotidine, switching when one stopped working.

So far Dexilant has been working quite well, actually. This is my first encounter with chest pressure in a while, so it’s done its job. I’ve also been able to cut down on the Rolaids/Tums addiction. And I had that salad on Saturday with no ill effects, which I’m pretty sure I have Dexilant to thank for. (Do you know how much I missed salad? I LOVE salad. And I had to stop eating it or any raw veggies because they hurt me so much.)

But Dexilant, despite its many powers, is not a god, it seems, so things will slip through.

I had a lovely breakfast this morning, full of foods I’ve never had an issue with, and now I feel like I want to die. (Because it was at a cafe, it’s likely there is some hidden ingredient that is causing this that is actually quite benign — but my body being my body, it’s screaming “AHH! A BENIGN THING! KILL IT!”)

And the thing is, when you’re in this much pain, it’s difficult to be a functioning human being by any stretch of the imagination. The fact that I’ve managed to write this post at all and have it be coherent is a miracle — and I’m sure when I reread it tomorrow I’ll find approximately 91 billion typos and incoherencies strewn across it.

But I had to get this out. I had to talk about it — I had to be me again on this blog.

I tend to see my birthday as my true New Year’s. I don’t remember what I did in a specific year, but I remember what I did when I was a specific age. So I take my birthday as a chance to make changes in my life, to make resolutions or goals, to evolve.

This blog is the first thing on the as-of-yet-unwritten list, apparently.

-Katje, who is about to go try to survive the reflux with explosions on the TV screen

PS: Yes, it was my birthday yesterday. I am 30. If you want to get me a present, you could leave a review for one of my books on Amazon or Goodreads (or ideally, both). Or tell a friend you read something of mine and loved it, and direct them to my site.

PPS: So far 30 has entailed more bodily aches and pains than usual, hours of Stardew Valley, reflux, and lots of facing up to Adulting and such. Nothing particularly Flirty about it as I’m terrible at flirting, which my husband can attest to being the prime recipient of it, and certainly not Dirty, unless you count my kitchen counters.

1 thought on “Can we talk a bit about chronic illness?

  1. Oceanborne

    You may already know this and/or do this, but if you are sleeping on your right side, can you switch to your left? It sounds silly, but sleeping on on your right tends to make it far worse and your left better. There’s no consensus on why, though scientists and doctors have a few theories, which I apologize
    for not having the spoons to link to right now. But I first heard it from a doctor, and I promise I’m not talking out of my butt. I’ve had GERD since I was a kid. Raising the head of your bed, if possible also helps (my GI doc suggested bricks or cinderblocks, but whatever works). I’m sorry you’re going through that. Acid reflux is no joke.

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