Do you ever have those days where you’re trying so hard to put one foot in front of the other, and then someone has the balls to ask you why you can’t keep up? Then when you tell them you’re having a bad day, dealing with some pretty intense fatigue, they kinda just roll their eyes and keep walking fast anyway?
Yeah, I had one of those days recently.
With Behcet’s disease tagging along, some days it is hard to keep up with that weight on your shoulders. And let me tell you, BD does not always approve of the typical twenty/thirtysomething social routine.
Exhibit A: Alcohol Fueled Late Nights
I’m sure you can sympathize with having a medication cocktail that has more than one drug with a “LIMIT YOUR ALCOHOL CONSUMPTION WHILE ON THIS MEDICINE” warning label on it. Normally, I’m pretty good about respecting that advice.
But sometimes, you go out with your friends, and you get a little carried away and mistakenly try to keep up with the group. Even though you do switch over to water, you’re still up way later than your body wants to be, and your liver is NOT AMUSED by the amount of alcohol you’ve had.
And you know what happens next?
You guessed it! Happy Flare Day!
My advice? Stick to a drink limit or offer to DD. That brief buzz isn’t worth the inevitable flare, and being the sober one means being the one with all the blackmail.
Exhibit B: Balancing Bailing
It seems like all twentysomethings have ENDLESS ENERGY and like to make last-minute plans:
- Let’s go to dinner in 5 minutes!
- Let’s go to lunch right now!
- Wanna go to the movies in 30?
- We’re going to this festival 5 hours away and need your answer in 10 minutes!
- We’re going to a concert Wednesday night. Wanna join?
Now, I don’t want to be rude. I certainly love being invited, and it’s nice to have options of things to do.
Plus, with Behcet’s, it’s not like having advanced warning guarantees I’ll be able to make it.
But, the more time I have to plan ahead, the more I can do things to help my body be prepared and well-rested for any activity. Though sometimes, no matter what I do, fatigue just drags me down and I have to cancel.
I’m always worried that people might stop inviting me because of how often I have to say no, even though I explain it’s just not a good Behcet’s day. Sometimes I’ll go anyway, even if I’m not really feeling it. And, honestly, I often still have a good time! It’s all about learning where my body’s limits are and respecting them.
Exhibit C: Couch Time
Couch time encompasses time spent on my own couch, and time spent on my therapist’s couch. Adjusting to a chronic, unpredictable illness, and having someone objective to help me navigate it has been such a help.
In terms of my own couch, I can’t tell you how many nights I’ve fallen asleep on it and woken up early in the morning to wander to my bed.
I’d like to say that this is just a product of Behcet’s, but my family and roommates would quickly rat me out… Let’s just say, it’s gotten significantly worse with Behcet’s and that darn fatigue.
Plus, spending days battling fatigue or recovering from a busy day on my couch are fairly regular occurrences.
Suddenly, that episode of Bob’s Burger’s makes so much sense…
Exhibit D: “Diametric’ly Opposed, Foes”
If you don’t understand that quote, then I demand you immediately go and listen to the Hamilton sound track because there’s no way in hell you’re getting tickets in your lifetime. Once you’ve done that, you can return to this article.
Instead of Hamilton and Burr, the diametric’ly opposed foes in the life of a chronically ill twentysoemthing is the battle between alternative and conventional medicine.
See, I’m very aware that without the medications I’m on, my Behcet’s would make my life absolutely miserable. I need to be on these potent drugs in order to keep it in check.
But, I’ve always been a person who HATES taking pills.
So, while I’ve developed a good schedule to keep track of all of my pills and take them on time, the thought of taking anything else, especially when I get a cold, just irritates me.
Enter the granola crunchy, all-natural, clean-eating, organic, anti-chemical, eco-conscious hippie-ness that is currently en vogue.
- Nauseous? Drink some ginger or mint tea
- Stressed out? Meditate while diffusing lavender essential oils
- Feeling “off”? Do some yoga to balance your chakras
- Low vitamin D? Get a happy lamp!
I can feel some of you skeptics giving me the side-eye. On the other hand, I can feel the granola crunchiest of you side-eyeing me for staying on my conventional medication.
There are passionate die-hards on both sides who believe you should be all one or the other. But, for me, I prefer a blend of both. And while that means I can never be fully welcomed by either community, I’m OK with that.
Verdict: Putting Myself First
At the end of the day, I’m learning to do what’s best for my body. And while it does suck sometimes to not do everything I want to do, or feel like I should do at my age, what I’m gaining is a better understanding of my body and myself.
