Just take your (randomly prescribed) medicine

The medicine doesn’t seem to be working as well anymore (not that it was anywhere near as good at handling my symptoms as the steroids were). The way I’ve been thinking of it is the new meds were making the intolerable barely tolerable. But not the last two days.

A few things could be potential triggers. For one, I always do worse when I’m working—an eight hour day just makes things extremely worse—and a week long vacation where I spent most of it sleeping in and chillaxing in a reclined position was much easier for my body and mind to handle. Also, had a glass of wine a few nights ago—one fucking glass! I don’t know if it was just a certain type, maybe my body decided to go nuts about the tannins unlike it ever has, but the long term effects have sucked balls, and I haven’t gotten better in several days (or more accurately I have hours, sometimes, when I feel okay, then go quickly downhill for no rhyme or reason).

So… Drink less (or not at all), get worse. Smoke less (or not at all), get worse. Eat better (or not at all), get worse. Exercise more, get worse. Work, get worse. Reminds me a lot of when I went through the whole Lyme drama, especially the part where I went to the ER in July and nearly five months later not a single doctor seems to be taking it very seriously. Take for example my cognitive issues, of which I’ve told every specialist, doctor, and nurse I’ve seen since July. Let me explain in terms anyone can understand.

Imagine you plan to spend the evening cleaning your kitchen. Normally, you might plan ahead a little bit, making a mental checklist of things you’re going to do:

  1. Put the dishes in the dishwasher and start it.
  2. Put things away.
  3. Wipe down the counters and stove.
  4. Clean out the fridge.
  5. Sweep the floor.
  6. Mop the floor.
  7. Take out the garbage.
  8. Put the dishes away.

Now the time comes to clean the kitchen. You walk into the kitchen, but you can’t remember your mental checklist. So you look around, realize there are dirty dishes, so you put them in the dishwasher, then you feel a bit dizzy, so you stand there looking around again, trying to regain your train of thought. Oh yeah, you realize the counters are cluttered so you start putting things in the cupboards. A few things are garbage items from last night’s dinner so you throw those in the garbage, which is packed full, so you take the garbage out to the garage then you’re in the garage again, wondering why you went in there because a cat is standing at your feet vying for your attention so you pick it up and pet it and call it George. Oh, you have to pee. So you go pee and while washing your hands you realize oh yeah, you were going to wipe down the counters and stove. So you walk into the kitchen and suddenly your head’s pounding and your eyes are a bit blurry. Maybe you need something to eat? So you pull some left overs from the fridge and sit down at the table to eat and as you slowly chew the entire checklist comes into crystal clarity into your head so you scarf down the rest of the sandwich, while it’s still clear, stand up, have an intense dizzy spell where you feel not nearly enough oxygen is getting to your head, see in your mind everything you need to do, but can’t quite figure out how to do it. Then suddenly, more clarity. You finish putting things away, clean the counter, stove, and clear out the fridge. Like this you struggle to perform simple actions—simple actions that only seem simple until you break them down into their constituent steps requiring balance, coordination (both mental and physical), memory, planning, and numerous other cognitive skills, which seem to come and go at random. The worst of it is, if you sit down, stop, and stare at the kitchen, you know exactly what has to be done, but when you start flaring up, when the symptoms get worse, making all the parts dance nicely together takes double, triple, quadruple the time it normally would, and worse, you easily make stupid mistakes or forget things you’d ordinarily do. The end result is something that would ordinarily take an hour to do “right” takes two hours, and worse, only gets half-assed done.

You tell your doctor this and their response is nothing or, “We’ll see what the next specialist says,” or “I don’t see anything wrong with you,” or “You’re too young to be having these symptoms,” or “Just get some more rest and I’ll see you again in two months” (or fill in the fucking blank).

God I’m tired of this shit.

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