Fire and Fatigue: When The Bad Days Reign Supreme

What is it like when the bad days reign supreme? You’re always exhausted. You feel like your muscles and joints are on fire. You can feel your immune system start to crumble. So what do you do to cope? How can you cope?

When The Bad Days Come, Just Getting By Is Enough.

You’re not going to be going out and about, being the little social butterfly you’ve always longed to be. Doing anything but the bare minimum feels like an unattainable myth. Even some of the days, what you’d normally consider your “bare minimum” is more than you can manage.

When it takes all your spoons just to get out of bed, make yourself a cup of tea, and sit on the couch doing nothing but scroll through social media and watch brain-numbing television, it’s easy to get mad at yourself. You should be doing more with yourself. How could it possibly be healthy for you to spend the whole day making a potato look like the epitome of activity?

It’s healthy because it’s better than the alternative. Those are the days where if you push it, you’ll land yourself in the hospital and put yourself out of commission for days- weeks, even, if you’re not careful.

But I Thought This Wasn’t The Norm Anymore.

So did I. I even wrote my very first blog entry about how I get infusions to keep the bad days to a minimum. So did I stop getting my infusions?

No, I still get them.

So what’s going on?

Your guess is as good as mine, honestly. The last three cycles, they’ve had less and less of a long-term effect, and have hit me harder and harder during them.

I was supposed to see my doctor about it yesterday, but they were running more than two hours late, and by the time I had waited two hours from when the appointment was supposed to be, I was already 45 minutes late to work. So I had to bail, and didn’t get to see the doctor yesterday.

That means they were able to get me in later this week though, or next week at the latest, right?

Unfortunately, no. Even with shuffling things around and squeezing in during those appointment times they say don’t exist, but actually do if you know who the right people to talk to are, I still have to wait three weeks.

What Do These Bad Days Feel Like?

Imagine that you’ve been dumped into a vat of acid. Your muscles and your joints feel like they’re on fire all the time. You’ve got a constant headache that’s constantly threatening to turn into a full-blown migraine. Everything is too bright. You’re constantly nauseous, and food is more of a chore than something enjoyable. Anything you do eat is more likely than not to cause all sorts of digestive system dysfunctions. It doesn’t matter if you sleep 4 hours or 12 hours or anywhere in between, you’re constantly tired to the point of not always being able to tell if you’re awake or asleep.

You can feel your immune system start to crumble. You keep saying it’s just allergies, but you know better. Allergies wax and wane, and they don’t make your temperature fluctuate. Allergies don’t cause malaise with you. Every small change makes your immune system throw a temper tantrum. You like pork? Too bad, you can’t tolerate eating it anymore without your body treating it like you have some horrible allergy to it.

And that doesn’t even begin to scratch the surface of how you’re feeling mentally.

As any good doctor will tell you, your mental health is closely tied to your physical health. If your physical health declines, your mental health is sure to follow. Your anxiety will start to spiral out of control. You’re not sure if you don’t have the motivation to do anything because you’re too tired and too in pain to do it, or if it’s because you’re too depressed to manage. You’re praying that a manic cycle won’t get triggered by either hitting rock bottom, or, even worse, when you start to feel better.

All in all, you feel about as well as a New York City trash can fire. On a good day.

So What Can You Do?

Wake up. Get through the day. Go to sleep. Rinse, repeat. It’ll either get better, or it won’t. And if it won’t, be too stubborn and spiteful to let it turn you into a shell.

When you’re put into a situation like this, there’s no way to win. Miracle cures don’t exist, and at best, with effective treatment, bad days can become the exception rather than the rule. But when those treatments stop being effective, or aren’t there in the first place, you can either succumb to the darkness, or succumb to the spite.

I choose spite. If my body wants to make me miserable and try to kill me, I’m not gonna make it easy for it. If it doesn’t want me to be happy and healthy, I’m… not gonna be happy or healthy, but I’m gonna damn well try to be.

I’m not “strong” or “inspirational,” I’m a dumbass who doesn’t know when to give up and is as stubborn as they come. So you can find me continuing to trudge along, pretending I’m an almost functional human, until either a) things get better, or b) my body decides it’s had enough and presses the self-destruct button.

Is There Anything I Can Do To Help You?

No, but I usually appreciate you asking. Unless you’re sitting on a massive fortune of grant money to research conditions like mine to find cures, or have the power of the gods and can heal someone with a thought, there really isn’t anything you can do to help.

Actually, wait, no, I did just think of one thing. Copious amounts of tea and chocolate. Those never hurt. And cute animals. I like cute animals.

The point is, I appreciate your concern. But sometimes “man, that really sucks, I’m sorry” is the most you can do. Don’t try to push your ideas of what I can do “better” or “different” onto me- it’s nothing I haven’t thought of/tried/researched before. I’ve been living with this for years and know more about it than your average doctor.

The fact is, this sucks. And it’s going to continue to suck. So I’m just going to continue being that stubborn, spiteful dumbass and not tell everyone just how bad it really is so they don’t all feel sorry for me.

Until next time.

-Nick




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