I have been there – to the place where you think your allergic life is unlivable. On a trip to Florida a couple of years ago, I got off the plane having a reaction to something. Who knows exactly what; I’d eaten only my own food, but hadn’t wiped down my seating area. Had a passenger before me been snacking on a peanut product? Or had I somehow contacted one of the various peanut products clearly in evidence (M&Ms, pb sandwiches, trail mix) as I made my way to and from the restroom?
Peanut seemed the most likely culprit, but as the symptoms progressed on disembarking, I was more interested in fixing my raspy breathing than the cause. An EpiPen injection was followed by a trip to the emergency department of Sarasota Memorial Hospital (and more epinephrine). Four hours delayed, our vacation was finally off to a shaky start.
Fortunately, I’d booked a condo, so we could do our own cooking. I just wasn’t psychologically up to dining out. Not yet. I was having a moment with my allergies; I was feeling unsafe. Those of us who live with food allergies or celiac disease have these moments. In my case it lasted a few days, and then I was ready to be out taking precautions around food but being out all the same. For others, especially parents of children who have experienced anaphylaxis, moments can turn into months and years of trying to eliminate all conceivable risk. In other words, a stressful quest for the impossible.
In the Summer 2011 issue of Allergic Living (“Get Your Life Back!”), writer Jennifer Van Evra shows that new research is finding an alarming decline in the quality of life of parents with allergic kids – and if you see yourself in that article, don’t despair. But I hope you will consider the advice that is offered. In this magazine, it comes from a place of caring and understanding that “finding balance” in the case of food allergies isn’t some routine work-home juggling exercise. We’re talking about your child, about anaphylaxis risk and about your own emotional well-being. It’s complicated ground, and you may have to push yourself a little at a time. But you can get there.
One of the key messages in the article is that once you take all the right precautions and teach them to your child, you need to get out and live life – for your own well-being and for your child. The only way you eliminate all risk is by coping through avoiding life and its adventures. And that’s not much of a life, nor much of an example.
If you need to talk about your situation – maybe you’re feeling overwhelmed by the idea of traveling this summer, then come and talk to the great parents in our community on the allergicliving.com Forum or on our Facebook page. That’s another theme that arises: we need to talk about quality of life with those who understand. It really helps.
For me, this summer’s leap is going to be to stay at a cottage on an island quite a distance from a medical clinic. In past, that was outside my comfort zone. But I’ll make sure all the food that will be on the island is safe, I’ll have lots of epinephrine and I’ll be in the company of my husband and good friends who know my food risks and what to do in the unlikely event of an emergency. (And there is a good boat.) It’s not exactly skydiving, but it is my own little test of bravery. But more to the point: the lake is gorgeous, the friends are great, this is living. And I’m going to enjoy every minute of it.
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