Planning For Self-Care Success: Protecting Your Mood
The past seven years of my life were inundated with major life events, including the deaths of several of my closest family members, a sudden entry into dementia caregiving with my uncle (I call him The Dude), painful losses within my inner circle, and the worsening of my AS. Some great stuff happened too. I became a well known AS advocate, Disability Twitter influencer, and writer.
My Grand Canyon
These events left me changed and cut off from my IRL social networks, bad news for this extrovert. I wasn't the same person and the constant stream of tasks took up all of my energy. Unfortunately, life doesn't wait very long for people to come back from whatever trips they've taken. Everything keeps going, people move on, often leaving patients and caregivers behind. After a while it felt like almost everything from my old life was on the opposite side of a canyon.
My work as an advocate, writer, and friend to people living with illness, caregiving, disability and difference comes from my Twitter. I don't regret the choice to live AS and dementia caregiving openly. Social media is powerful tool to organize, educate, break down stigmas, and do all the other do-gooder stuff, but they let anybody on there, opening our lives up to novel conflict and abuse.
2017 and 2018 brought a strong desire to change, but how? Leaving social media wasn't desired or possible. There was no way to leave my responsibilities at home. And I'd fallen out of touch with most of my old squad. Exploring five questions helped to recover some self-care priorities and intentions, and get started toward reviving important relationships.
- Which people, places, or activities make me feel my best?
- Has unwanted distance grown in my relationships?
- Who have I fallen out of touch with?
- How might I reconnect with?
- Which people, places, or activities help me to grow or be successful?
- Rebuild my address book using address labels from holiday cards, emails, and text messages.
- Create a stash of letter writing supplies from local discount stores.
- Recruit several pen pals from my friends list and began corresponding at my own pace. We exchange letters, cards, poems, recipes, or articles.
- Send a limited number of cards for Christmas, Passover, Easter, and a few Valentines.
- Raise and release 9 butterflies in 2018. I just bought several host plants for this year. It's something just for me that I really look forward to.
- Revise my relationship with media to prevent constant and exposure to upsetting and harmful information.
- Committed to get guest hosts for my chat and cancel it what I don't feel up to it.
Please know that this remains an ongoing project, not something that I decided to do on a Tuesday and woke up doing perfectly Wednesday morning.
What are your butterflies?
Other than back pain and fatigue, what is the most common symptom that AS patients experience?