What’s it like to live the Autoimmune Life?
Some days living with an autoimmune disease isn’t so difficult. I can still have a life. Maybe I can’t hike through the Big Bend, raft down the Frio or climb the hills of the Texas Hill Country, but on those rare days, I feel almost normal. Almost. I can go to dinner with friends, do a little shopping, or have family and friends over.
Then a flare hits.
Flu-like symptoms – Fever ranging from 99 to 101. Indescribable fatigue worse than when I worked all day and studied all night during my college years. Waking up ever more tired than when I went to bed. Exhaustion without sleep. When I do sleep, I wake even more tired than I was before I went to bed.
Pain radiating from hot, swollen joints that feel as though a jackhammer is inside each one trying to destroy it. As the inflammation worsens, the use of joints becomes more limited. Pleurisy that hurts with every breath can also join the myriad of symptoms.
During flares, my husband helps me dress and undress. Sometimes he helps me off the toilet and out of my chair.
Then I start prednisone. It causes mood swings, hot flashes, difficulty sleeping, sweet cravings, and a generally crazy feeling. But it helps the symptoms. It interferes with sleep but does decrease the pain, fever, and other inflammatory symptoms.
While I always have symptoms, they are much worse when I’m flaring. The time-span between flares varies. Sometimes I got from one flare to another.
Despite the disability of living with an autoimmune disease or multiple autoimmune diseases in my case, I do have a blessed life. While I can’t do many of the things I would like, and I frequently have to rest or nap during the day, I have a family who loves me.