"You never go out anywhere."
"Why won't you do this ....or that....".
"Live your life.... You are just bringing this on yourself... by anticipating it...and thinking about it all the time.."
Many people who suffer invisible illnesses hear these things often.
I'd love to say I was over reacting..But my life is not the same as theirs.....They do not see what I see or deal with what I do.
But time in and time out I've experienced the patterns that go along with Cyclic Vomiting Syndrome. There's a reason its call CYCLE... it actually has 2 patterns ... the patter of how it presents... AND the pattern of spaces between episodes.
I count it as blessing that I have been able to develop a sixth sense about when it is about to happen. Others may not see the warning signs or miss the triggers that are screaming to me to WATCH OUT, BE PREPARED, TAKE COVER NOW.
Would you ignore the tornado warning on your TV because the weather is fine when you look out the window. No that would be crazy. You would realize that there are people trained in this area who's job it is to keep you safe. You would seek shelter and wait for more information. And just like the weather, CVS changes and has so many factors that come into play.
Like weather forecaster, I am parent who is weighing risks all the time. If we know a cycle will land us in the hospital (and the large medical bill that often goes along with it), of course we would do as much as we can to avoid it.
Many of us have learned the hard way.... what things set off the cycle such as crowds, cake and gifts which naturally create excitement, or certain foods like cheese, gluten etc. I've never been to a children's party where the goal was to not be fun or exciting. Its a childhood rite of passage, the friends, the parties, the playdates.
To many cyclic vomiting syndrome families, everyday childhood joys feel more like a crossing a field of unmarked land mines. Which ones will trigger a cycle? How long will it last? Will the home medications work? Will I have to take them to the hospital? Will the ER understand why its "not a virus"?
We often celebrate in different ways spreading out Christmas gifts, or making sure that vacations are closer to home. We are going to help them celebrate in ways that they enjoy and does not make them sick. It's different then what others do or how others live...... and THAT'S OK!
Sometimes its hard not doing what everyone else thinks you "should" be doing. But honestly, its helped us to get creative and find better ways. So we have special family meals with cake for birthdays and not the large parties that invite my child's whole class over for games. We may invite 1 special friend to go rent a movie and camp out in the living room? If it ends with a wonderful memory and does not include a puke fest after, we succeeded.
We are doing out best not to bring on a cycle. Life is exciting, no matter how you look at it... so its our job to keep that excitement at an manageable level to keep the puke monster away.
We know that we cannot outsmart it every time... but we are not going down without a fight. We will work with what we have been given to make the best life possible. Knowing your enemy is a better approach than just heading off unarmed into a battle you should have been coming.
Our life might be different. But it's our life and we will live it to the fullest in our own way. So next time you want to question me about why I do what I do... please think....
.JPG)
