There are times when I neglect my lupus so much that someone could call ACS on me. Lupus is a part of, and like a baby, I should nurture my health. But I go through these seasons where I pretend lupus isn't a part of me. I mean, I never asked for this cranky child that changes lives, expects me to plan around it, makes me go to bed early, stay up late, cancel dates, stop drinking, sit still, and pacify it with meds. I'm expected to keep my lupus close to my chest because at any point in time, it can wake and it will scream into my joints and bones.
I think anyone with a chronic illness has seasons where they want to pretend it doesn't exist. We watch our friends giggle and chat during a day at the mall, not wanting to be the one to say that your body is ready to go. We let the adrenaline take over as we ignore the late hour, keep dancing, and pretend that, coupled with the dehydration from your friend's birthday shots, we won't feel it the next day...and probably for the next two days. We forget pill boxes on the counter, reschedule doctor appointments when they conflict with work, and miss infusions. We wish our Lupus fog would help us forget we have Lupus instead of forgetting where we put our keys. This brat of a disease sometimes quiets down. But as with real children, quiet can feel like it's getting into something and trouble is a'coming.
Lupus is so unpredictable. But honestly, sometimes it isn't. We know our triggers and what we should do to keep it from acting up and showing out. But it seems easier to try to live life like the young parent whose mom is always down to babysit. Drop lupus off and keep the party (or just the regular life) going. Sadly, it doesn't work that way.
Our stints of disconnecting our lives from our illness, as if the two can't work hand in hand, can put us at risk for severe flares and hospitalizations. Sure, we can have a couple long nights and fun days. But pretending Lupus doesn't exist can cause it to bawl at your joints, keep you up at night, leave you drained during the day, and throw a tantrum so terrible, you'll only desire to be in fetal position for weeks.
I understand wanting to hold on to the life you had when you were single and not paired with a chronic illness. But learning how to have it, grow with it, hate it but still live with it will only benefit me in the long run. Neglecting lupus meant I was neglecting myself. It took a lot to be able to remember that Lupus is something that forces me to listen to my body's cries and nurture my body (something we all need to do with or without an illness). I don't feel guilty for needing to take breaks, power naps, and saying no. I realized the parties I missed were the same as the last ones, and being sober made everyone seem even more hilarious. Even though this brat called Lupus continuously tries to mess up my good time, I still truly believe I can still have a life filled with joy if I just paid it a little attention.