20 Ways to Make the Most of Bad Flare Days
When you have chronic illness, bad days and flare-ups are inevitable. Fortunately, there are ways to still make them a little more bearable. We asked our Dysautonomia Support Network members to share some of the ways they make the most of their bad days or flare-ups, in the hopes of inspiring others with dysautonomia or other chronic illnesses like Ehlers-Danlos syndrome, Marfan Syndrome, gastroparesis, postural orthostatic tachycardia syndrome, and Chiari malformation. Our members have great ideas, but what matters most is taking care of yourself in ways that suit you and your needs.
1. “I try to make sure I always have something ‘quick’ for meals from the freezer so I don’t have to stand very long to make a meal.” – Lucille R.
2. “I make the most of it. I read a book if my brain fog isn’t too bad or watch Netflix. At the end of the day I reflect on at least one thing that went well, even if it is hard to come up with something.” – Molly K.
3. “I train my cat to do tricks. It helps me give permission to myself to not feel bad about having to take it easy and being stuck resting on my couch. I still feel productive by doing this, as silly as it may sound to some.” – Jo C.
4. “I use my support system as much as I can. I ask my husband or my mom to bring over food. I throw on a show or podcast to distract me and try to make it until the pain/nausea/whatever stops.” – Hayley W.
5. “I try to rotate rooms I’m bedridden in so that I get different views. I make sure to have my kids and family around me so I’m not alone. It keeps me encouraged.” – Amber C.
6. “I enjoy playing on the phone while in bed. I keep my charger plugged in so all I have to do is plug it into my phone. I sleep if I can” – Tonya B.
7. “I seek what gives me comfort – hot pad, doggies tucked in beside me, medications, fluids, and hold tight on those days to connections with friends (online and in person).” – Adrienne S.
8. “My dog, Lady, has come to love my flare days, as they usually turn into belly rub days on the couch watching a movie or catching up on shows.” – Alexandra Z.
9. “I need lots of cuddles, and my fur babies and husband are usually pretty good at providing peaceful comfort. I enjoy a warm bath (not too hot) with Epsom salts and a bath bomb, where I listen to Tara Brach’s Mindfulness of Pain or Steadying Your Mind by Rick Hanson meditation. I have candles burning, no lights. Then I will usually hit the bed with lots of pillows and all of my medications and plenty of fluids on hand. Then I bunk down with Netflix. I have to work hard at forgiveness and letting go in the moment when I am having a flare. I find mindfulness helps me there.” – Tamsin M.
10. “I spend time in [online] support groups.” – Amber C.
11. “I’ve found that knitting gives me a challenge mentally while my body rests.” – Tessan B.
12. “[My daughter] finds some small relief in her very dark, cold room with blackout shades and an ice pack for her head. Her devoted rescue puppy somehow senses her bad days from her good ones and simply won’t leave her side for anything. I think sometimes her dog, Lilly, is the best medicine she has when she’s at her worst. ” – Michelle J.
13. “Snuggling with my boys and watching a movie or show we like. If I can sit up, I play card games, sit out on my deck and overlook our pond and enjoy the pretty outdoors and my decorations. I nap when needed. I drink lots of water and eat small salty snacks.” – Erik A.
14. “I play games on my laptop and phone. It’s great because even from a hospital bed, there’s fun adventures and lots of friends who support you from all over the world!” – Stephi J.
15. “I do a lot of praying and send out requests to my prayer warriors.” – Amber C.
16. “[I listen to] books on tape for days when I’m too sick to keep my eyes open. My pup makes me feel less alone. I try little, easy craft projects on medium bad days.” – Sarah F.
17. “I watch Netflix or listen to a book on CD, and if my hands aren’t in pain I knit. It helps to relax me, and I also feel productive even though I’m resting in bed.” – Emi D.
18. “Cuddling with my cats, and plenty of Netflix, hydrate and chill.” – Elyse H.
19. “I make the most of bad days by locking myself in my room and watching Ghostbusters on repeat with my pug Oscar!” – Sherri L.
20. “Let yourself have down time and don’t push yourself too much. Think of your energy as a bank, if you use energy you’re going to need to rest to save up more energy.” – Soojin K.
Note: Dysautonomia Support Network has edited posts for clarity and length.
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DSN is a U.S. based, 501 (C) (3) non-profit, an organization providing support, resources, education and advocacy for patients affected by the many forms of Dysautonomia and related conditions such as Connective Tissue Disorders, Mast Cell Activation Disorders, Chiari Malformation, and Gastric Motility Disorders. We empower our members by supplying them the tools, support, education and resources they need to adapt to life with chronic illnesses while challenging themselves to set new goals despite their physical limitations. Toward this end, we provide scholarships for education, volunteer opportunities, advocacy training, service dog grants, educational programs, and other essential resources to enable our members to actualize their dreams. We are an volunteer organization, run by patients for patients. We offer support, training, awareness programs and socialization opportunities for individuals and families living with complex chronic illness globally. We educate the researchers, educators and healthcare providers as advocates in the community. We currently manage online support groups 24/7, 365 days a year. Our global network encompasses our online Global Communities on Facebook and Inspire; Regional FB Communities for four regions in the US; special interests groups for Caregivers, Military Families, and College students; and Lifestyle Clubs - which focus on our passions, hobbies, and overall wellness.
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