Self-care for Chronic Illness
Self-care for Chronic Illness
June 20th - 3PM EST
Welcome to the #LupusChat recap! In this supportive discussion we focused on self-care for chronic illness, and we explored methods that work for each of us and came up with a plan to integrate them into our lives.
We went over some #LupusChat guidelines to help our conversation flow smoothly, then got our #LupusChat party started by sharing our name, where we are from, a little bit about ourselves, and what our favorite game show is. Here is a recap of our conversation and here are just a few of the wonderful people who joined us at #LupusChat.
Welcome everyone! Thanks for joining us today! I’m Carly, Patient Advocate and co-host of #LupusChat. My favorite game show is Wheel of Fortune but I have a strange obsession with Minute to Win It also. pic.twitter.com/Lx2iigqOZh
— Carly by Nature (@SynceNerd_Carli) June 20, 2021
Ivey Janette,Albuquerque. Surviving lupus and heart issues. Still here. Favorite game shows are Password and Match Game. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) June 20, 2021
I'm Stephanie in Atlanta, Lupus has lived with me for over 8 years and I used to watch Who Wants To Be a Millionaire. #LupusChat
— itsmorenamorena (@itsmorenamorena) June 20, 2021
Hey #LupusChat, I'm back 💜 Sofia from Portugal, I sing A LOT and love radio. I used to love a portuguese show named "soltem a parede" . It was iconic 😂 https://t.co/B3AhU38RnY
— Sofia (@abssofia) June 20, 2021
Hi... I'm Elizabeth from NJ and a #LupusChat co-host.
— Caring For Lupus (@CaringForLupus) June 20, 2021
My connection to lupus is through my daughter Miah.
Our favorite show is Family Feud!!! https://t.co/saQejmM4QL pic.twitter.com/mt2kctaXrH
Then we began with question 1.
Q1. How do you define self-care? What are your thoughts on the practice of self-care?
A1. I think self-care was crucial in getting me to where I am today. It took some learning for me, learning about myself to know what brings me joy and peace, what my body needs to be at its best. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) June 20, 2021
A1. Self-care is loving yourself, because self love is the best love. #lupuschat https://t.co/JsghM5Ur1D
— MarDontKnow (@MarTG993) June 20, 2021
A1: Putting your need for comfort ahead of all else to relieve tension, pain, stress, etc. I've made self-care a sustaining and frequent practice of my life. I also realize it's a privilege I have to do so. #LupusChat
— itsmorenamorena (@itsmorenamorena) June 20, 2021
A1. Self care is taking time for yourself to do whatever helps you feel any positive emotion. For example, I need some time to myself to relax right now, so I’m sipping tea and eating hazelnut tea biscuits #LupusChat https://t.co/W6prjE7kKw
— MikeyMoozer bIm (@MikeyMoozer) June 20, 2021
A1: Self-Care is putting your needs first be it your health by getting good sleep, eating foods that are beneficial to you, listening to your body, listening to your emotions (i.e. gut feelings, how you feel around others, etc.) & doing what you can to feel your best.#LupusChat
— Netert Aset Re 🌞 (@NetertAsetRe) June 20, 2021
A1: Although I am an advocate for self-care I often fall short and don’t spend enough time doing things that solely bring me joy and peace. I’m working on it. #LupusChat
— Carly by Nature (@SynceNerd_Carli) June 20, 2021
After we put “self-care” into words, we focused on its practice in Question 2.
Q2. Is self-care something that you take into consideration in your life? Is it part of your routine?
Yea, it's always frustrating how unpredictable life with Lupus is. Makes it hard to plan certain things. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) June 20, 2021
A2. Yes. Especially in the last 18 months after a hysterectomy and 3 trips to the cardiac unit. Now a top priority. Rest. Medication. Meditation. Therapy. Listening to my body. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) June 20, 2021
A2: Oh absolutely. I don't play about getting time in for self-care. I do something daily towards it whether it is something simple as taking relaxing, cleansing breaths to relax my mind or more engaged as getting a massage to relax muscles and help with flexibility#LupusChat
— Netert Aset Re 🌞 (@NetertAsetRe) June 20, 2021
A2: Now that I'm more aware of what may be "self-care" I can see that I try to take it in my life, by making my "feelings" a priority (not sure I'm using the right words) and respecting my limits #LupusChat https://t.co/1p6kz9L2Os
— Sofia (@abssofia) June 20, 2021
Q2 TMI: I get violently sick without constant self care. When I’m stressed, my body shows no mercy against me. Self care literally keeps me alive #LupusChat
— MikeyMoozer bIm (@MikeyMoozer) June 20, 2021
A2: For me, the practice of self-care doesn’t have to be a grand gesture or activity. It’s more about actively pursuing and experiencing things that bring me joy, comfort, and balance. #LupusChat
— Carly by Nature (@SynceNerd_Carli) June 20, 2021
Because self-care is different for everyone, we explored what the practice means for members of our community in Question 3.
Q3. In what ways can self-care look different for people with chronic illness?
A3: For those of us with chronic illness -- selfcare might look a bit different. We may have to mentally check in with ourselves to check our pain and energy levels. It could be saying “no” to something we’re not feeling up to. #LupusChat
— Tiffany (@TiffanyAndLupus) June 20, 2021
Q3: just not being sick or feeling terrible is self care, that’s actually a excellent care 😂😂😂 #LupusChat
— ShiffonTheStar ⭐️ (@ThatNewJointx3) June 20, 2021
A3: Self-Care can look different by way of maybe having to use extra aids to move around such as a cane or having to be extra careful about eating certain foods/taking herbs because of flare responses. It can also be using alarms as reminders to take life saving meds.#LupusChat
— Netert Aset Re 🌞 (@NetertAsetRe) June 20, 2021
A3. It depends on the severity of the illness. Rest is the main priority. We may not be able to exercise or participate in activities due to pain. We also have to focus on our mental state more diligently. Staying positive is important. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) June 20, 2021
A3. To me, self-care is almost often synonymous with rest lol. Because that is what I need most often. For people with chronic illness, selfceare means prioritizing our health. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) June 20, 2021
A3. It depends on the severity of the illness. Rest is the main priority. We may not be able to exercise or participate in activities due to pain. We also have to focus on our mental state more diligently. Staying positive is important. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) June 20, 2021
Oftentimes it feels like there aren’t enough hours in a day or our day is extremely overwhelming. For Question 4 we examined the existence of self-care in those times.
Q4. What do you do when you’re not able to set time aside for yourself?
A4. Deep breathing. Staying hydrated. Prayer. Taking breaks as needed. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) June 20, 2021
A4. Sparing gory details, I get sick. Yes, even after skipping self care for one day. The longer I can’t self care to destress, the more sick I will be. ER visits are common when I have not been able to destress. I have organs that fail when I can’t destress #LupusChat https://t.co/UdDrkPmduo
— MikeyMoozer bIm (@MikeyMoozer) June 20, 2021
A4: hmm...I always try to focus a little just on: "breath in, breath out, repeat" and, even if I just have like 2 minutes to do it, I sing. Singing always helps me 🥰 #LupusChat https://t.co/gaWkD02lH0
— Sofia (@abssofia) June 20, 2021
A4. In cases like that where I won’t really have a chance to recharge, I reorganized my days to not overdo it. I try to be much more discerning/efficient with how I use the little bit of energy I have. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) June 20, 2021
Q4: honestly I have to set sometime away for me, even if it’s 5 minutes or I will suffer 😞#LupusChat
— ShiffonTheStar ⭐️ (@ThatNewJointx3) June 20, 2021
A4: That's rare these days. The university where I work has programs during the work week for self-care and community among staff. I am doing a releasing stress exercise hour this week over zoom. #LupusChat
— RaquelRoschell (@raquelonpurpose) June 20, 2021
People experiencing a chronic illness may have to create alternative ways to practice self-care. We discussed this more for Question 5!
Q5. What are some care methods that help provide comfort when you’re experiencing pain, insomnia, and/or brain fog?
A5. Weed, a tenz unit, maybe a weighted blanket, and doing whatever takes little physical need or thought process. Like watching tv reruns, playing plotless games like Animal Crossing, cuddling my bunnies if they’re accepting of cuddles in the moment #LupusChat https://t.co/lOlNw166mK
— MikeyMoozer bIm (@MikeyMoozer) June 20, 2021
A5. I have a heating pad. Ice packs. Tylenol. Ben-Gay or Icy Hot. I'll put on YouTube videos of rainfall or trains to put me to sleep. Or watch golf lol. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) June 20, 2021
A5: As for brain fog, there are zero ways for me to receive comfort about it. It actually gives me great anxiety and I stress which just deepens or kicks me into a flare. #LupusChat
— Carly by Nature (@SynceNerd_Carli) June 20, 2021
A5: Binge watching movies on my couch. Also walking. It can help with pain after sitting for long periods. Cushioned chairs. Meditating. Music. Listening to symphony & classical for insomnia. #LupusChat
— RaquelRoschell (@raquelonpurpose) June 20, 2021
A5: Brain fog is extremely frustrating for me. Especially when it causes verbal memory loss and suddenly I’m unable to form sentences during a conversation. I try not to beat myself up about it but it’s depressing. #LupusChat
— Tiffany (@TiffanyAndLupus) June 20, 2021
Finally for our last question of the day, we shared insights with others in the community.
Q6. If you’re comfortable, can you please share some self-care tips and practices that you’ve found to be most helpful?
A6: Boundaries will always be #1. I guard my heart, health and my time as best I can. Good eating. Rest. Having fun alone & with friends/family. Going to bed at a reasonable hour. Good sleep matters more than I thought. #LupusChat
— RaquelRoschell (@raquelonpurpose) June 20, 2021
A6. I also learned to be ok with saying no and/or having to miss out on things for the sake of my health. It's unfortunate but if that's what my body needs, that's what it needs. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) June 20, 2021
A6. What works for me the best is training in the gym and some meditation. #lupuschat https://t.co/3YZnKZnkLD
— MarDontKnow (@MarTG993) June 20, 2021
A6. Listening to my body. Taking naps when needed. Eating healthy. Listening to music. Watching relaxing videos. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) June 20, 2021
Q6: relaxing, taking all your meds, listening to relaxing music, eat some good good food. Light some candles. It’s like giving your child a lil chill pill treat👏 #LupusChat
— ShiffonTheStar ⭐️ (@ThatNewJointx3) June 20, 2021
A6: I think it’s really important for each of us to carve out some time to do something that brings us joy no matter how big or small it is. Those moments can help fuel us throughout the day, week, year. It helps sustain us for the long term. #LupusChat
— Tiffany (@TiffanyAndLupus) June 20, 2021
Thank you for reviewing our recap. You can still participate in this Twitter conversation by clicking on the LupusChat icebreaker prompt and questions above and replying. Make sure to use the format "A1. This is my answer. #LupusChat" and add the hashtag to your responses.
Enjoy the rest of your day & remember to practice a little (or a lot) of self-care today.
It is absolutely okay to take time for self care.
You can’t do things well if you don’t feel well.