The most oft-heard question posted on health communities and forums around the world, that I’ve seen, is, “How do you live with an autoimmune disease?”
This question is most oft’ preceded by the statement, “I’m so scared.”
Autoimmune disease is bloody scary.
Autoimmune disease as a parent, spouse, friend, daughter, etc…is exponentially scary.
I’m going to go out on a limb here and say that, for me, parenting while battling chronic disease is simply bat-shit crazy scarier than my disease.
P. Brynny has five children.
One is a recovered drug addict.
One has behavioural issues and mental wellness issues.
One is left out of the attention pool because she’s damn near perfect.
One has a cholesteatoma which may, at a future date, indicate the possibility that a pocket of infection will eat away at his skull.
One is on spectrum and is probably the biggest reason P. Brynny doesn’t drive straight into the Ottawa River on the less-than-stellar.
Having an autoimmune disease with children is a challenge in determining what and how much information they can handle and/or process.
P. Brynny wears a helluva lot of hats during each day.
P. Brynny also sets herself up for metric ton of “What the hell did I tell which kid?!”
Parenting also makes you face your own mortality. That’s always scary. Facing an extra dose of “get your shit in order” is goddamn paralyzing.
As a spouse, P. Brynny doesn’t just ponder the soul-sad of leaving behind a husband…wondering who will be the next woman to love him…P. Brynny ponders the even greater perspective:
What would happen if something happened to HIM.
People. P. Brynny needs a change of underlings, that scares her so much.
She’s done two years of single parenting of all five spawnlings. Ho. Lee. Shit.
P. Brynny needs to find a way out of providing childcare to the other families, in order to focus more on her own. But, finances absolutely forbid it. Not with five children. Not even making the peanuts that childcare so overwhelmingly gets trashed by, “I have to pay HOW MUCH for daycare?”
You would never, ever, purposely choose to make this little money, friends. The chaos of P. Brynny’s reality serves to stepping-stone to something better.
Thing is, autoimmune disease doesn’t always give you the time to do those better things.
Parenting comes with its own challenges when one has an autoimmune disease…one that has certainly strengthened P. Brynny’s strength and abilities:
If her hands don’t work, P. Brynny can go for a walk.
If her legs don’t work, P. Brynny can play games. She’s got a repetoire of which games are only a few minutes in length (oooOOOOoooo!!! There’s a blog post topic, fo’ sho’!!), ones you can play on the couch…etc.
If she’s got brain drain, she calls for snuggles and the younglings come to have some time to sit and watch a movie/tv show/etc.
P. Brynny has to be honest with her kids, and let them clearly know her expectations and limitations. Further, she’s GOT to let go of the guilt that often accompanies saying, “No.” She can’t have an island lair with cabana boys and drinks with lil’ pink umbrellies in ’em…so…ya. Life ain’t all purple painted ponies pooping butterflies jacked up on SugarSmacks.
The children now can process alternative ideas to suggest, on their own.
P. Brynny has seen her social network redefined. Some have left her circle. Some have come into her circle. Sometimes, it makes her really sad when people leave, but P. Brynny has come to the understanding that people need to do what’s best for them…not her. Likewise, she’s also learned that people need to own their shit. P. Brynny, included. She’s #1 in her life because…y’know…it’s her life.
Your reaction to her hopes/dreams/ideas/goals/accomplishments/successes? Hopefully, they’re supportive and awesome. 😀 Not so much? Your problem to own, not hers.
It’s tiring…always having to redefine… restructure… rethink… adapt… modify… change.
The key P. Brynny has in her pocket is the very same key each and every other person has in their pocket:
It’s how P. Brynny keeps on keepin’ on. How she perseveres. How she keeps “Do.”ing.
Maddening, sometimes, it is. Tiring, always, it is.
Yoda pretty much nailed that sumbitch with the words:
Friends, you must “Do.” No matter how small, no matter the circumstance…there is always…always…something you can “Do.”
Send an email. Click a “like”.
Learn something online. Learn something on campus or at your local recreation center.
The more you interact with your friends, family and communities, the more they know. The more they know, the more the possibility of understanding.
Confirm by living.
You hold the pen in your own saga. Be excited for new chapters.
Make it epic. \m/