Having a chronic diagnosis throws a wrench in my sense of “wellness balance”. Some people have a flare then no more problems; others have persistent, relentless disease and are debilitated. Being in the middle of the continuum is very muddy and grey.
Over the last ten years I’ve spent about two years of it feeling really well. The well times are scattered around–a week here, a month there. For me, the name of the game has been “SHREWD SYMPTOM MANAGEMENT”. It frustrates me, my friends/family and even my doctors. The symptom list is long. Some of them come and go; others linger like a cloud. It has also colored my perception of others (as I’m sure it has colored their picture of me!).
I hear patients complain about being nauseated or having diarrhea (WARNING:LEAVE NOW IF YOU’RE DELICATE OR DON’T WANT TO KNOW TMI!) and feeling achy & flu-like. I’m tempted to reply “I ran to the bathroom 11 times & puked twice before I came to work. My whole body feels like a toothache. Suck it up.” However, I refrain & hold my tongue, reminding myself that everyone’s “normal” is different. If the patient had managed those symptoms for years, he/she would have a different perception & a fist-full of coping strategies as well.
My symptoms began when I was 17 years old & the string of doctors and tests began. After several visits & processes I was diagnosed with “anxiety, nervous stomach & irritable bowel”. I finally gave up on doctors, lost my insurance and got busy raising kids and working. Yet I was always sick. Fevers, rashes, sores in my nose and mouth, relentless diarrhea & fatigue, joint pain, no appetite….. I stopped four times during my one-hour drive to work, carried a change of clothes and baby wipes and popped six pepto-bismol chewable tablets a day. Still, the doctors told me “You’re too young to be sick”, “It’s your nerves.” Anyway… I’ll leave that rant for another post. Point is, I’m accustomed to managing & coping. Through all of the crap (pun intended) I worked two jobs, divorced and raised my kids. Life sucked though…
Diagnostically, I’m in the weeds as well. Sometimes I’m not sure which doctor to tell “what symptom” to, and trying to tell everything to all of them is daunting. Lately I’ve been beginning to think “Why bother”. With autoimmune diseases the treatments are basically the same. If one is being treated then the others are often covered. And it will only help for a while. And it is often prohibitively expensive. And it makes me feel bad but I’m more functional overall…. My rant is turning to a whine….
I’m tired of shrewdly managing and I would LOVE to just BE… It’s definitely time for me to go to bed. When all else fails—sleep.