Are You Feeling Spread Thin?
By Padma Gordon
Feeling spread thin was a common theme in our group this week. If you are caring for a spouse or child with a Rare disease, you likely know what it feels like when everyone needs something from you at once. Between managing appointments, medications, therapies, and constantly coordinating schedules, it can seem like there is never enough of you to go around. One of the practices we explored was learning to speak to your needs and welcome support. We also talked about the reality of "free time." You may technically have a few hours available, but the things that truly nourish you are not always available when you are. Instead of asking, How can I do more? try asking, What do I need most right now?
For families raising both a Rare child and a neurotypical sibling, it's important to make space to check in with your neurotypical children about how they are feeling and what they need. Communication is a practice that requires presence and listening. At the same time, remember that you are part of the family system, too. If you find yourself thinking, I should be doing more or I shouldn't be feeling this way, notice that your inner critic may be taking over. Pause, acknowledge your feelings, and ask yourself what boundary would best support you. Protecting your sleep, saying no, or asking for help are all acts of self-love.
Sustainable caregiving begins with caring for yourself. Prioritize sleep, nourishing food, exercise, time in nature, and the support of people who understand your journey. Give yourself permission to simplify. You do not need to prepare separate meals for everyone every night, it has never hurt anyone to eat a sandwich. The more you care for your own body and nervous system, the more resourced you become for the people you love. Learn what your whole family system needs, but never forget that you are part of that system, too. You are worthy of the same care and compassion you so freely give to others.
Coming Up on July 14: Stage 1 - Something Isn’t Quite Right
This week our theme will be noticing changes. In the early stages of becoming a caregiver for your Rare child or spouse, you are asked to embrace many changes as you move from a full or part-time professional to a full-time caregiver. Feelings may arise including fear, guilt and possibly shame as you step into becoming an expert on your child’s Rare disease which can be overwhelming. In this session, we will explore ways to stay calm and steady as you navigate your ever-changing life as a raregiver. Learn simple practices to regulate your nervous system. Join us for a practical and supportive session.
Please Join Us for the Women's Empowerment Circle every Tuesday at 10am PST.
You may not realize how much you need the Raregivers community until you find it.
Zoom Link: https://us02web.zoom.us/j/84782918881
We look forward to being with you soon.
