When Mommy Is Chronically Ill: Now Is Rarely A Good Time
When Mommy is chronically ill, "now is not a good time," takes on a whole new meaning. When Mommy is in bed most of the day, most days of the week, of the month and of the year, seeing Mommy in bed is normal. Chronic illness is forever. You never get better. You manage symptoms with anti-inflammatory and immunosuppressant medications. You can, at best, go into remission and get a reprieve from all symptoms.
But you never recover as there is no cure. Autoimmune diseases are chronic illnesses. An autoimmune disorder occurs when the body's immune system attacks and destroys healthy body tissue by mistake. There are more than 80 types of autoimmune disorders. I have have four autoimmune disorders, mostly stemming from Ulcerative Colitis, an inflammatory bowel disease (IBD) which destroys the large intestine.
The exact cause of inflammatory bowel disease remains unknown. One possible cause is an immune system malfunction. According to Mayo Clinic, “When your immune system tries to fight off an invading virus or bacterium, an abnormal immune response causes the immune system to attack the cells in the digestive tract, too."
Autoimmune illnesses are often “invisible” to most people; those suffering may appear healthy and able-bodied, especially when they are young. Invisibly suffering, as we drag through the day, is incredibly frustrating and often it becomes a second battle to convince others of our plight. I divorced a man who insisted I was “faking it” because he couldn’t see my guts disintegrating from ulcer sores. My physicians advised me to ignore the nonbelievers. Arguing with them expends limited, precious energy.
According to one study, “Profound and debilitating fatigue is the most common complaint reported among individuals with autoimmune diseases.” Once, my Ulcerative Colitis was in an endless raging flareup. I grew sicker and weaker every day. It became a struggle to walk to the mailbox at the end of the driveway. I was breathless from collecting the trash bins at the curb of my house.
Taking a shower became such an exhausting feat that I would collapse on my bed, wrapped in a towel with my hair dripping wet on the sheets. I'd fall into a deep sleep for 45 minutes to an hour. My weight dwindled to 87 lbs. I could barely function as I wasted away. But I wanted to ensure my children had a “normal” life and didn’t miss a single event.
When Mommy is vomiting and having excruciatingly violent abdominal spasms, "not a good time" is during the actual vomiting or diarrhea episodes. "A good time" to talk to Mommy is the time in between expulsions. Even though Mommy is lying in bed or, more likely, lying on the bathroom floor because she doesn't have the energy to crawl back to bed, that is still "a good time" to talk to Mommy. It's the only time my kids get. They never know when I'll be violently ill again.
So, this is how our life looks:
Mommy vomits.
Mommy collapses on the bathroom floor, sweating and trying to catch her breath.
The kids hear a pause in retching and poke their heads around the corner of the bathroom door.
They say, "Mommy? Are you alright?"
If I muster the energy to groan even a tiny noise, they shuffle onto the bathroom tile holding their schoolwork.
They fire questions at me and anything goes: detailed math questions, geography trivia, and extremely complicated philosophical questions are the norm.
They talk about friends and concerns. They cry about recess worries or homework overload or whether they'll ever be able to do a split in ballet. Sometimes they're really worried about me, but mostly they're used to it. My kids have the same stuff on their minds as their peers do; they just sit on the side of the tub to talk to mommy while she's in a disheveled heap on the cold tile floor.
I muster the energy to talk to them. My brain still works really well and I know the answers to their questions. My voice doesn't always work, but I can usually croak out something or at least nod. This is the time when poetry has been written and when debates have been practiced. Public speaking has been fine-tuned. Ideas have been created. From the floor of my bathroom! In between vomiting and diarrhea!
When I start to retch or crawl to the toilet, my kids will get a garbage bag for me to puke into. They get cold washcloths for my forehead. They bring me water. When it's over, they crawl in bed with me, paper and pen in hand. They have deadlines after all.
This is simply our reality.
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Repurposed from: mabelandmoxie.com