I didn’t realize how much I needed a break until I had a nervous breakdown after my best friend died by suicide. What followed was endless PTSD symptoms such as out of my body feeling, physical pain, flashbacks, numbness and more. I learned the hard way that self-care needed to be a daily part of my life to recover. In my recovery, I have found a calling in sharing my path to help other medical parents.
Do you recognize when you need a break for a minute, an hour, a day or even a weekend? I found it very hard as a mother of a daughter with a genetic disorder, to figure out when I needed a break. There were certainly times when my life felt out of control, but I didn’t have the right tools to do anything about it.
Over the years, I’ve cried while on the phone with the insurance company and even the phone company. Much of my life felt out of control so my frustration and emotions came out at the other person on the other end of the phone. I sincerely apologize to those people who didn’t deserve my tears or wrath.
Of course, I cried at various doctors’ appointments over good and bad news through the years, but it was more acceptable to show emotions there.
After my oldest started school, I did hire a babysitter to come over every Wednesday for 2-3 hours, so I could get out of the house. At first, I just sat at a coffee shop and stared at the wall. It took a few weeks to have the focus to pick up a book to read. That’s when I first realized I needed a break, but didn’t know what else to do.
How Can You Tell When You Need Self-Care?
I have included responses from an online survey filled out by medical parents. They responded to the question ‘How can you tell when you need self-care?’
Darla, mom to Rollie with Down’s Syndrome explains that she needs self-care when “Emotions are high and at the surface.”
Katie, mom to Stella with Turner syndrome replied, ‘When I grow extra impatient with my family.’
Micah, mom to Annissa with Turner Syndrome and Cleft palate, replied, “When I feel completely overwhelmed and frustrated by the lack of answers.”
That always should have been a sign I was overly stressed. I have a tendency to yell when I am frustrated.
Yvonne, mom to Sage with bipolar, OCD and TS, replied to ‘How can you tell when you need self-care?’ with, “Still struggling with this. When every little thing makes me want to scream and yell, I know I need to take a step back.”
At the beginning of my caregiving journey, I didn’t understand what the doctors were saying. I was in a post-partum and understandably upset. Luckily, that changed later, and I could understand what was going on.
When asked ‘How can you tell when you need self-care?’ Stephanie, mom to Amy with TS, answered, “I start to mentally check out at the doctors since we see one nearly weekly.”
I had my first panic attack after my daughter was diagnosed with her genetic disorder. I couldn’t breathe and I was terrified. Meditation and yoga have helped immensely.
Colleen, mom to Claire who has Turner syndrome, said,” Working full-time and trying to fit in doctor appointments, meeting with teachers and other school professionals is exhausting. I never knew I had anxiety until my daughter entered school, and all my worlds started competing for my time. The increase in heart rate and trying to fight my tears is my trigger.”
I always thought I had more anxiety than depression, but as I look back, I remember days where I didn’t feel like doing much of anything. I always explained that I was tired, but I was most likely depressed.
In response to ‘How can you tell when you need self-care,’ Melissa, mom to Tyler with 1p36 deletion syndrome said, “I’m often in a rut, and would rather sit and do nothing, or sleep than any other activity. I call it my “blah days.”
Consumed by Worry
This was pretty much how I lived for years. Consumed by worry. It never helped my daughter and it certainly didn’t help my stress level, but it was hard to stop. When your child is sick, you will do anything to make her healthy regardless of your own well-being.
Therese, mom to Brady with complex heart issues and multiple open-heart surgeries, explains, “I know I need self-care when I start becoming consumed with worry about Brady’s health as well as when I am not sleeping well, when I become irritable and when I am less optimistic.”
Through daily breathwork, yoga, and meditation, I can remain calm through most situations now. The keywords are Every Day. Of course, I have also done a lot of trauma work to get to a calmer place.
So, before you start having breakdowns at school, the doctor or at home, start taking care of yourself…everyday.
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