Self-Care During the Holidays

The conversation this past week in our Rare Family Dynamics meeting revolved around holiday stress.  It can be  tricky to take care of yourself during the holidays, especially as you witness your Rare child’s needs increase. Self-care can be even harder to maintain when things get really intense.

Be Curious

We often think of self-care as getting a massage or resting with a lavender eye bag, while listening to soft music. The possibility is to be curious about what fills up your bucket, what nourishes you and what it is that interrupts the grief cycle.

Sometimes you may actually need more input so doing things like volunteering may give you more energy while at other times you may need to exercise or take a cat nap. Listen deeply and you will know what you need.

Use Your Team

As a raregiver, it can be tricky to ask for what you need. Imagine that what you need is to take a swim. Enlist the help of someone on your team to remind you of your commitment to yourself. You take care of them and they take care of you. It is a symbiotic relationship.

Stay Connected

It can be challenging to stay connected to your social network. Perhaps doing your job helps you to maintain social connections. 

One raregiver said that her top three most regularly dialed phone numbers used to belong to her husband, pharmacist, and the neurologist. Expand your circle of communication. Stay in touch with others who may also be experiencing a similar kind of chaos to your own.

Perfection

At holiday time, you might want to make everything perfect. Let it go! This is too stressful and even more so when your child or children are sick. Surrender the idea that everything needs to be perfect. Do what is in your flow. Be happy and relax into the spirit of the holidays.

Prioritize Yourself

As a raregiver, it’s important for you to prioritize yourself. This means putting your self-care time on the calendar. Schedule time to put your feet up and relax. Let people know about your self-care commitments. Do not relinquish this time unless it is an emergency. If you have an appointment with a doctor, you show up for it. An appointment with yourself to exercise or rest is no different.

Make a List

You might also make a list of things to do when you have time to yourself. If you really need a night away, put this on the list too. For many of us, if it’s not on the list, or on the calendar, it won’t happen. It’s up to you to make it happen. 

Coming up this week: Tending to Yourself as a Raregiver

As a raregiver, it can be easy to lose yourself in caring for your child or children. You may experience a radical shift in your perspective on life and your identity as other than the mother of a child with a Rare disease may disappear. When this happens, self-care often falls away or drops to the bottom of your impossibly long to do list. 

Priorities shift and you dive headlong into learning everything about your child’s Rare disease as well as managing their care each day. Please join us for a conversation with other Rare caregivers who are discovering ways to care for themselves and their Rare family. Bring an open heart and trust that you have wisdom to share.

You Belong Here

This group is open to all raregivers regardless of gender or relationship status. Join our amazing community of raregivers who understand you. Come and be seen, heard and truly understood. Let the community hold you. We meet on Tuesdays at 10am PT. Come for all or a portion of the session. 

Your presence is a contribution.

Zoom Link: Click Here

I hope you have a good weekend.

Warmly,

Padma