Let me state the obvious for a second: PANDAS and PANS are stressful. Duh.
Earlier this month, I asked a few questions on the PANDAS Sucks Facebook Page and on Instagram: “What are your favorite ways to practice self-care & self-compassion? In other words, what would you tell a Stressed Out PANDAS/PANS Mom (or Dad) to do to take care of themselves? We all know we can’t pour from an empty cup and that we need to put on our oxygen masks first. How do YOU do that?”
From those questions, we had a lovely discussion on social media. I shared a bit of my own advice AND got many tips from other fellow PANDAS/PANS Moms. This blog consists of all of those tips that were shared. Hopefully, you will find something to help you practice Self-Care when you are STRESSED OUT. If you have something you’d like to share, please drop me a line here.
Sarah/PANDAS Sucks: I stay up late & get up early. I use that time to zone out on social media or read a book (and NOT a medical research book!).
I drink my first cup of coffee in silence. And I will often make a cup of decaf herbal tea in the evening to have just the practice of making the tea & then the relaxation of drinking it.
I have a few game apps on my phone (Tetris, Three’s, Yatzy, Chess, Solitaire–okay, that’s more than a few ?). I have a few educational and brain training apps too (DuoLingo, Elevate). I find that it’s good to use my brain for something other than worrying about whatever stressor is at hand.
Remember, the word “No” is a complete sentence. If you cannot take on another project, say “No!” If a project is becoming to stressful, say “No!” If you just do NOT want to do it, say “No!” Don’t let anybody, including yourself!, guilt you into doing anything. Your child has PANDAS or PANS, and that is a lot to deal with already.
I use mindfulness and meditation. I took a Mindfulness-Based Stress Reduction/MBSR course back in early 2012 and found it to be helpful . I’m teaching Jesse some basics too. (I took a teaching mindfulness to children course back in 2015.) I personally use Omharmonics binaural beats for meditation. It’s important to know that mindfulness is simply being in the now…that’s it. Meditation is whatever you want it to be. Don’t worry if you can’t clear your mind…nobody can! With meditation, you are simply training yourself to know when your mind is running on its own and learning to focus. With mindfulness, you’re learning to know when your mind has a mind of its own so you can rein it back in and respond versus just reacting all the time. There are also apps (Omvana, Headspace, Buddhify) that can help you get started.
I binge watch. I don’t watch a lot of TV, but I tend to do it all at once. LOL! Downton Abbey. The Queen. The Grinder (funny!). I’m watching seasons of Mary Tyler Moore right now. I used to feel bad about it when I’d binge watch but don’t anymore. I accept it as a coping mechanism. ?
A good Merlot & dark chocolate help a lot. ?? And my husband bought stuff for margaritas & pina coladas back in December. That helps too.
I did 2 years of therapy with 2 different therapists starting in Nov 2011-Nov 2013. My advice if you do therapy is to be sure you are getting something out of it vs just bitching. Now if venting is all you need, that’s great. I know myself really, really, REALLY well & knew I needed more. My first therapist was happy just listening, but my second therapist made me do work, set goals, and helped me make progress in dealing with all of my PANDAS PTSD and stress.
Monica: Workout & Eat Clean. If you aren’t healthy, how can you take care of those that are sick? Working out 45 minutes a day has done more for stress relief and my mental health than seeing a psychologist every other week. Not that I wouldn’t recommend doing both but I needed something on a daily basis and did not want to turn to meds to relieve my own anxiety.
Sarah: Yes to the going to bed late and up early. I play online scrabble. I smoke – a lot! That’s about it at the minute really. Look forward to seeing what others do and pinching some different ideas!! ?
Lisa: Unfortunately our stress is 2-fold since my husband lost his job in November 2015, so we keep busy by working 4 part-time jobs between us, since my son’s anxiety from PANDAS has kept him from school. Watching our favorite TV shows and movies is how we get by. Using our slow cooker has helped with meal time and cost efficiency, since of course medical bills are through the roof. Look forward to reading other ideas – thanks for sharing.
Tina: Yes you need to take care of yourself as well! I’m finding that out now! I’ve put all my energy into my kids, I let my own health slip. Now I’m dealing with the consequences! Please take time out for yourself, you’ll thank yourselves!
Janine: Epson salt bath for me! And gym on Sundays. That’s about it for me as I’m single mom who works full-time and have two pandas boys but a bath a day = success! ?❤️️
Stacy: I take a walk at a nearby park or forest preserve when the weather cooperates. I like to pray as I walk, but if you are not one who prays, just being out in nature is a good way to bring some calm and balance to your day.
Paula: I’ve learned to set better boundaries. I’ve learned to say NO. I’ve learned that taking time for myself IS being a good mom. Cannot pour from an empty cup! I’ve learned to spend some money on myself – my nutrition, my fitness, my health, my dreams, my desires.
Katie: I take meds now after last summer having a health scare. But when the kids are in bed, I exercise and also put my headphones on and listen to music.
Carol: I teach classes at the gym. I had gotten certified in two classes (Body Pump and RPM) right before my son “fell off the cliff” into PANDAS hell. Nothing has done more to help me maintain my sanity than getting out of the house a few times a week, turning the music up, and focusing on the people in front of me for one hour. They have become my best friends and have held me up. Even when my son was at his worst I had to go to the gym and put it out of my mind for one hour so that I could give a good class and work out at the same time. It isn’t always easy to teach class (like the days when my son was at home in OCD hell and thank God my husband could stay with him for an hour until I got home again). It has been incredible to do something that is good for me and good for everyone who comes to the class, and to get thanked for giving them a good workout. I also like tea, chocolate, books, and binge watching TV.
Kelly: I walk in the nice seasons. Winters are painful!!! I can’t stay up later than my panda anymore- but I do get up earlier for my alone time just me and my coffee!!!
Haley: Girls night. Gym.
Tricia: Anything you can do on a weekly basis to give yourself a break. A book club, hike, walk the dog, a tennis league is amazing. The #1 thing for me after being “hunkered down in my panda cave” for a long time was literally getting out of my house by myself with strict rule that no one can text me. My dh would be home with ds so he was fine. Being able to “unplug” from my ds for just a little bit every few days really helped.
Libby: I just completed a Whole 30 (very strict Paleo for 30 days to reset everything). I wouldn’t recommend it for a parent dealing with serious crisis but we are in a decent place now, & it’s a great way to take care of yourself, feel more in control, and feel better overall & start to feel more like yourself.
ariellebacon: Art and reading are two really big things for me, personally.
marambika: Getting in nature, volunteering, getting in water, epsom salt baths with lavender. That’s when things are good. When bad: binge watch The Office. (Note from Sarah/PANDAS Sucks: Volunteering. Yes. I guess all of my PANDAS/PANS Advocacy is a self-care tool because it gets me outta my stuff & lets me help others at the same time. ❤️)
annerunz: I run.
catbelly: I’m so glad you brought this up! I do a lot in terms of self-care such as not taking on obligations than I can’t handle, keeping stress at a minimum, etc. I still feel like I lack the emotional tools to deal with my son’s pandas at times and have thought about seeing a counselor or therapist. I hope that will help me better learn how to deal with my own anxiety, stress, and worry about his health issues.
It’s important to note that taking time for yourself is NOT selfish. Practicing Self-Care is so important for Caregivers when it comes to any illness. What I’ve found in my research is that so much of the Caregiver advice is slanted to dealing with aging parents, ill spouses, or hospice care. In PANDAS/PANS, we’re giving care to our children, or sometimes our grandchildren or nieces/nephews, which we’d be doing anyway. But this chronic illness called PANDAS (or PANS) makes all of that care different. There are major twists and turns, and you never quite know what to expect as far as symptoms…only to expect the unexpected. We have to fight with doctors for care. We fight insurance companies for coverage. We have to fight with schools for accommodations. We have to fight with family and friends to even get them to acknowledge the true tolls of the illness. None of us planned for our parenthoods and our kids’ childhoods to be like this. It’s all exhausting, and it’s understandable that while caring for our PANDAS/PANS kids that we would devote ALL of our energy on them. No wonder our Self-Care suffers.
I want to send a huge THANK YOU for all of the PANDAS/PANS Parents and Caregivers that shared their own Self-Care tips and tricks! I’m turning this whole idea into a PANDAS Sucks series with a “Self Care” Category on the blog. In the coming weeks and months, I’ll be sharing more self-care ideas, books, articles, meditations, and more. (Wanna share your Self-Care tips? Click here.)
In the thick of the stress and strain of PANDAS/PANS, it’s easy to lose track of time and somewhat neglect yourself. It just happens. Any parent is only as happy as their unhappiest child, and PANDAS/PANS is no fun. But you have take care of yourself when you’re caring for others. I promise to keep reminding you of that. TAKE CARE OF YOURSELF!!! ❤️❤️❤️
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Sarah Jane Alleman is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. She is also the Director of Kentucky PANDAS/PANS Support, which strives for more awareness, support, and understanding of PANDAS/PANS. Sarah was a Parent Contributor to the book “PANDAS and PANS in School Settings.” Find PANDAS Sucks on Facebook, Instagram, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.