How I respond to being overwhelmed in life with Angelman

What is it about being overwhelmed that can make you try to do even more? Is it the need to catch up or fix whatever is wrong? Whatever fuels this drive, I’m working to do less when I feel overwhelmed.

Taking it easier is not what comes to mind when you’re living with a neurogenetic disorder like Angelman syndrome. However, as I raise my 13-year-old Angel, Juliana, I continuously work to keep a snail’s pace when life gets too crazy for me.

There’s an ebb and flow to all things, including life with Angelman. Some seasons, like our period of constant reflux and incontinence woes, are more challenging than others. But while seasons come and go, there are times of the year that require more intentionality to avoid becoming overwhelmed. For our family, the month of May is one of those times, as is the transition back to school in August.

Last May, I decided to do something I hadn’t tried before. Not only did I take moments to engage in more mindful practices, but I also countered feelings of being overwhelmed with inactivity. I generally try to be aware of when my stress levels are high and respite is in order. But this time, I kept a log of my triggers, and each time I felt overburdened, I responded with a specific action.

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For some, simple redirections may not accomplish much, but they do for me. Daily care of another individual leaves little idle time, and sometimes when I’m helping Juliana with her meals, managing her hyperactivity, or steering another trip to the bathroom, I just need a break. Throw in the stress of a busy time of year like the beginning of school or an illness, and it’s easy to feel pressure.

There are many things I can’t remove from my plate as a caregiver, but that doesn’t mean I can’t stop doing an activity when I have reached a limit. Stopping doesn’t mean neglecting my responsibilities. But it has meant:

• Going to bed earlier
• Giving myself permission to ignore housework and watch a TV show
• Climbing back into bed with a cup of coffee.

As the mother of a daughter with Angelman syndrome, I support my daughter the best way I know how. But I can’t change many of the challenges we both face. Choosing a slower pace for my life helps. But I’m also learning that some seasons will be more challenging than others. I don’t have to feel like I’m in over my head during those times. Instead of pushing myself to do more, hitting pause is a better solution to help me not feel so overwhelmed.

Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Angelman syndrome.