It’s 2 AM and I am wide awake. Painsomnia (pain induced insomnia) finds me sitting before the computer screen, torn between trying for a few more hours and throwing in the towel. This? Is getting to be a BAD habit!
I have an auto immune disease that is causing my immune system to attack my muscles. The whole process of dealing with it has turned out to be kinda like an arranged marriage; you think you may have heard the groom’s name before, but you have no idea what he’s like or if he’ll make your knees weak and your heart race, or just leave you a little nauseous.
In the beginning, you work your way through the rough honeymoon period where you two-step around figuring out what “works” for both of you. On your end, how far can you metaphorically push this guy before he pushes back and what meds make him appear better looking and his disgusting behavior tolerable.
On his end, he may be a little curious how you’ll react to his shenanigans, but all in all, he’s a pretty self-centered bastard. For him? He hopes whatever pill you’re prescribed will leave you easily distracted so he can go about his business of turning the family home into one, huge Man-cave.
The pain meds are the ones that are great at distracting you from the major construction goin’ on all over the place, but the immunosuppressants can manage to slow the hubby’s roll and leave him sitting in the recliner, feet up and drinking a beer, too engrossed in the game on the flat screen to worry about the day’s planned demolition.
Eventually you find the delicate point of balance in your household and time marches steadily on. You may not be exactly happy about the situation, but you become…comfortable with it. You have your secret list, hidden away in the bedside table, of all the things that jar your “beloved” from his television reverie. Whether his triggers are food, weather, activity, or stress, you meticulously record them in hopes of never repeating the same mistake twice.
Then something happens and maybe you forget to pay the cable bill or you run out of his favorite beer and suddenly BAM! He’s wide awake and back to the remodeling he left by the wayside.
All day and all night, the hammering and the sawing and the noise and the mess! Your body has lost it’s flippin’ mind and everything goes into high gear, leaving you a pain-filled mess where only days before you were a confident chick, telling your friends, “I got this shit!”
You’ve moved past the honeymoon phase and now? You’re smack in the middle of a flare, baby! And for every tip, trick, well meant suggestion, or new med to help you deal with your overachieving partner, there are hundreds of combinations to sort through and only one of them is gonna work.
Basically, it all boils down to a waiting game. You wait until he wears himself out enough that he notices the cable’s back on and the fridge is once again stocked with cold brewskies.
In the mean time, sleep is for the weak and pain is measured with a pain chart of “1 to 10” instead of which over the counter pain killer will work best. The real casualties of this flare are your mental and emotional states. After all, there’s only so long a gal can go without a solid night’s sleep before she starts to hallucinate.
Honestly, at this stage in the “relationship“? I personally tend to take the desperate housewife’s approach and eat my pain killers and do my best to sleep through my body’s tantrums. Eventually it’s gonna wear itself thin and calm the hell back down. I’ve just gotta try not to rock the boat between now and then.
Here’s the sad thing, I know I’m not alone in this “forced marriage“ scenario. It’s estimated that nearly one in every two Americans has some form of chronic illness with a whopping 96% of all chronic illnesses being invisible. (Just…DAMN!)
At this very moment, the only things that my sleepless brain and I know for certain are; I move like Quasimodo (my right shoulder and neck are one ginormous ball of FLARE, leaving me all hunched-up), two weeks without more than two back-to-back-hours of sleep will leave you with mood swings to rival those of the little girl in The Exorcist, my real life hubby is enjoying the bragging rites (with my limited muscle reserves, sweet nookie literally leaves me unable to walk), and, thanks in no small part to the strain of my make-believe arranged marriage, this chick is in SERIOUS need of a nap!