In our second post in the patient vignette series meet Laura who shares her story of living with multiple chronic conditions. Laura paints a vivid picture of the never ending battle faced by many who live with invisible but debilitating fatigue. Just how does she accomplish so much?
We’re all tired. Kids, jobs, home, stress – it seems as if everyone I meet is some variation of exhausted. When you are living with a chronic illness or in my case, more than one, the exhaustion is omni-present.I was diagnosed with multiple sclerosis in early 2008, Celiac’s disease this spring and I also have a seizure disorder. Between my medical issues and the medications I take to keep them at bay, I can’t remember the last time I was awake before my alarm went off.
I somehow force myself out of bed to get my middle school aged child up and ready for his day then do the same for his younger sister. I make 2 breakfasts and 3 lunches, all before 7:30 AM and none of them are for me!
Once the kids are safely off to school and the husband off to work, I have some time to breathe. I try to remember to eat something healthy myself and usually spend the next hour or so checking and responding to emails, some social media and perhaps blogging.
I get myself ready for the day and throw in some laundry, make sure the dishes are done, wipe the counters and start to think about dinner, making a list of what ingredients I forgot the last time I was at the supermarket. As I am not quite tired yet, I head out to run errands: dry cleaners, pharmacy, grocery store.
By the time I get home, it’s usually another story. I get everything in the house and plop it on the floor. Unless it is ice cream, it usually stays there for a bit.
I make another cup of coffee and try to find some willpower. If I remember, I’ll switch the laundry and think about unloading the dishwasher.
If it’s a bad day, I’ll flop on the couch and watch the news for a while. Once the coffee kicks in I start cleaning. I have the chores broken up into chunks so there is never a full day of cleaning. I am beyond thrilled if I can get it all done. The laundry gets folded and hopefully put away, perhaps another load is brought down.
There is a moment each and every afternoon where I debate a nap. The nap wins out more often than I would like to admit.
The kids start arriving and the mayhem begins. Snacks, homework, forms to be signed, something is needed for school the next day. They chatter about their day and make me laugh with their stories of adventures. One often needs to get ready for practice so she is given a quick early dinner before heading out. On a good day we all eat together, on the days practice or a game interferes, we eat in shifts or on the go.
When that’s all over, I’m pretty much done. I slowly get the dishes done, wipe the counters again, hopefully remember to take something out for dinner the next day. The kids finish what they need to for school, get their backpacks ready for the morning and get ready for bed.
My pace has slowed to a crawl at this point and I start to get confused easily. I would love to spend some time with my husband but my eyes are glazing over. I plop down next to him on the couch and am asleep before I realize it. He nudges me awake at some point to head to bed.
Perhaps the hardest part for me, in juggling three diseases at once is that they are all invisible. I constantly think about what I can eat to keep my Celiac’s from flaring up, I am paranoid about new or worsening symptoms when it comes to my MS and while my seizures are under control at the moment, the fear that they could return at any point is terrifying. When you look at me at the dry cleaners or deli counter, I look the same as all the tired, stressed out moms.
Thank you, Laura, for sharing your story with us! You are doing your part to bridge the gap between those in healthcare and the patients they serve.
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