Autoimmune Disease: When Flares Get You Down

 

I prefer to live with autoimmune disease and the aftereffects of stroke by staying positive.

• I try to remember that I’m lucky to have recovered as much as I have. “Focus on what you have, not what you’ve lost,” I tell myself.
• A certain amount of pain and fatigue are just part of my life now. I try to push through the minor stuff and keep living my life.
• The company of friends and family is like at tonic to me. I try to keep dates, even when I’m tired or feeling less than well. Friends are usually happy to make some adjustments—a closer restaurant so I don’t have to drive so far, a ride if I don’t feel like driving, a movie instead of a hike.
• To me, purpose is one of the best medicines: making a call, sending a card, an email or small gift to someone who needs it; doing a favor; writing a story or sharing information that might help someone—these help take my mind off my own limitations.
• I try to rest when I’m overtired, and reign in my tendency to schedule too much, sleep too little, and turn to chocolate (sugar—BAD!) when I’m stressed.

 

But, as anyone with autoimmune knows, sometimes none of that is enough.

When my autoimmune disease—APS (antiphospholipid syndrome)—has flared …

I’ve been through weeks of crackly, aching joints, of pinching-pounding-stabbing along my spine … weeks of wanting to crawl back into bed after the simple effort of a morning shower … Itching red rashes and blue-veined legs—just a typical autoimmune “flare” courtesy of my particular disease, APS.

And, when life slings machetes at my friends and family at the same time—and there’s been far too much of that this year)—well …

 I  feel like it’s raining toads … like life’s going to the dogs.  I want to turn off the phone, hide under the covers, and scream. 

Sometimes I  do a little of that. Or vent on Facebook or in my blog.  But ultimately, I  get out of bed, attack the overdue work pile, admit that I can’t do it all, make apologies for late commitments, cancel some things that just can’t be done, and see to helping my loved ones who are taking it on the chin.

It’s usually this last part—trying to be there for someone I love—that’s the most healing step of all.