DISEASE MANAGEMENT: Self-care Sunday – what is it?

Photo by Sacha Chua, Creative Commons, used with permission

Have you heard of the term Self-Care Sunday? I hadn’t until recently, but I love the idea. I could explain what it is, but this blog post does such a great job, I’ve copied some of it below for you.

35 Self-Care Tips For People With Chronic Illness

• “Asking for help is ok!  (My family knows how strong willed I am so they don’t want to offend me by doing things for me and many times (ok basically all of the time) when they offer to help me I say ‘no’. Then on the off chance I ask for help, or accept someone’s offer to help I feel so relieved, and things get done (dishes, laundry, a night to myself because someone is babysitting) and it makes the person helping me feel good too!)” (Brittany)
• “Make a check list for basic self care.  If you’re feeling bad and can’t figure out why, a checklist helps get all the basics accomplished and then you’ll start to feel more clear headed (Have I eaten?  Have I had water?  Have I showered?  Am I wearing clean clothes?  Etc.  It seems like basic stuff to the able bodied and minded but sometimes it’s not so easy for us.)” (Currie Lee)
• “Make a self-care basket. This way when you really need to take a moment to yourself EVERYTHING will be in one place.” (Yvonne)
• “Talk to someone about how you feel. (I go months at a time fighting this fight on my own, trying to be strong for everyone around me. Put a smile on and fight through the pain. I have a background in psychology so I think that I can handle the feelings and emotions on my own. WRONG! I’ve been to counseling (for other issues, but my health did come up) and it was one of the best things I’ve ever done. When I get to a breaking point I talk to my husband about how angry or frustrated or guilty I feel and though he can’t fix the physical pain, just his understanding and reassurance lift a huge weight off my shoulders and make me feel not so alone and very very loved.)” (Brittany)
• “Forgive your body for disappointing you sometimes. You did nothing to deserve to hurt. Don’t punish yourself for perceived failures. Be gentle and compassionate with yourself.” (Kitty)
• “Give yourself grace and/or meet yourself where you are… the amount of time you have for self-care might be small or the amount of time you can stand to do it even, but you have to know that and meet yourself where you are and relax properly.” (Yvonne)
• “Small accomplishments are BIG Victories!  (I used to set ridiculous expectations for myself. Take care of a one year old monster who gets into literally EVERYTHING, keep the house spotless, dishes, laundry, bathrooms, run all of the errands, while working three days a week and spending every weekend with extended family running here and going there. At the end of the day I’d look around at the clutter and dishes and laundry and realize I had accomplished NOTHING. I would feel so useless and depressed and convinced myself I was a failure. My counselor helped me realize I was being totally unrealistic with my expectations. Now, I make a smaller more realistic list and if I accomplish one thing on that list it’s been a good day. It could be as small as ‘unload the dishwasher’ or ‘take a shower’. I am very okay with that now.” (Brittany)
• “Accept you are who you are. Your illness might get better but it might not. Working with yourself where you are is the first start.” (Cody)
• “Sex and/or masturbation are healthy, valid forms of self-care. There is a lot of sex-negativity that people with chronic illnesses face. There is the notion that because we are chronically ill, the last thing on our minds should be our sexuality and that we should not waste our very limited energy on sex or masturbation. We need to fight this sex-negativity and assert our right to be sexual beings.” (Erica)
• “Go outside and breathe even if it is for two minutes. Suns and air are healing.” (Kafi)
• “Allow yourself to use the Internet without guilt. I’ve found that a lot of people with chronic illnesses (and especially those of us who cannot work) use the Internet more than the average person. And that is okay! Don’t feel guilty about your Internet usage.” (Erica)
• “I would advise anyone with a chronic illness to build a support network. Don’t be ashamed to ask for that help. You don’t have to do it alone.” (Kitty)
• “Sometimes you have to allow yourself the easiest solution even if you’ve promised yourself you would stop (i.e. sometimes all I have to eat is bread and I can’t leave the house, even though gluten occasionally makes me feel sicker, I eat it anyway because it’s better than wasting away on my bed being hungry.)” (Currie Lee)
• “Have a self-care plan. Know that self-care doesn’t have to take a long time. You can do something in three minutes or you can take an hour. A self-care plan will help you look at what you can do in the time you have.” (Yvonne)
• “Find doctors or specialists you trust. Of course, there are certain limitations to this because of insurance plans, but finding someone you’re comfortable with can make a huge difference in treatment, especially if you have to see somebody on a regular basis. If you don’t fully trust your doctor or if you don’t think their approach to your treatment is a good match for you, find somebody else! If you can’t communicate openly with your doctor, they might not be able to provide you with the care you need. Self-advocacy is a huge part of self-care in my opinion.” (Kaitlyn)
• “Acknowledge the body you have instead of mourning the body you had.” (Kafi)

• “Do what you can when you can. I tend to get discouraged when I set out to do something only to get shut down by pain. I push myself to try but also accept the things my body is telling me. Some days I might want to go for a long walk, or clean the house, or go out with friends but my body isn’t up to it. I do as much as I can and rest when my body tells me I need to.” (Kaitlyn)
• “Find the right health care professional and use them. (I went through five OB/GYNs before finding one who took me seriously. I tried everything the others recommended and when I said I was still in pain they scratched their heads or gave me more birth control or told me to “just have a baby”. I have finally found a doctor that has been proactive in my treatment. He has uncovered several conditions we all thought were the cause of the pain and he treated each one aggressively and effectively. Though I know something is still not right as I’m still in pain he has not ignored my cries for help. He continues to give me options and takes my personal life and choices into account until the inevitable hysterectomy will  “cure” me once and for all.) Don’t be afraid to tell your doctor something isn’t right, pursue them until they fix it, or find a new doctor!” (Brittany)
• “It sounds simple, but when my body is hurting my favorite thing to do is to put on fuzzy fleece pajama pants, super soft socks, and a comfy shirt. It actually takes a good deal of pressure off of my body (and my mind) when I’m not wearing tight jeans or uncomfortable shoes. Comfy pajamas can fix pretty much everything.” (Kaitlyn)
• “Communicate. You have to tell your friends and family what you need or else they won’t be able to help you get that time.” (Yvonne)
• “Don’t be afraid to spend extra money on something if it is going to make your life easier.” (Currie Lee)
• “Something I always tell myself and taken as my life motto “Take one day (and sometimes one moment) at a time”. Living with chronic illness means that you’re going to have really bad days. Once accepting those days, I think learning to practice different self-care ways as the days come could be very valuable.” (Cody)
• “Stick to a routine. Getting enough sleep is a key factor in managing my pain. Since I also have disordered sleep, going to bed and waking up at roughly the same time every day is the best way to ensure I get enough. Keeping a routine also helps me notice patterns with my symptoms like what time of day they tend to be particularly bad or what specific activities or situations make them worse. Third bonus: it’s easier to remember if you’ve taken daily medications if you do it at the same time every day.” (Kaitlyn)
• “Learn to measure your energy in increments and treat your energy like currency. When performing a task or engaging in something, always always ask yourself, ‘Can I afford this?”” (Kafi)
• “Share your story. Not only will this help you mentally by getting your thoughts and feelings out, you may help others too. Someone may be suffering from the same condition but they’ve been afraid to talk about it before, or they may not even have a diagnosis if they haven’t brought it up with their doctor. You could discover someone you already know has a similar condition and find support there or create new friendships through existing support groups. Spread the word and spread your knowledge! Someone could benefit from your experience and you may benefit from others’.” (Brittany)
• “Remind yourself your body is still amazing. Chronic illness or no, your body deserves to be pampered every now and then. Get a massage, take a bubble bath, buy some fancy smelling lotion. All the usual self-care tips still apply.” (Kaitlyn)
• “Find a community. We all deserve to feel a sense of community. Because many people with chronic illnesses cannot leave the house much, our sense of community is often limited. I suggest you seek out some community (either online or in-person). You can join a church (or other house of worship), go to a group at a local library, join some Facebook groups, etc.” (Erica)
• “Find some hobbies you enjoy. They can be as low-key as crocheting or something more active, like taking dance classes.” (Erica)
• “Follow Through. Make the appointments you need to make; check ups, specialist visits, therapy, testing… all of it. Refill your prescriptions. Don’t talk yourself out of doing these things because you feel discouraged or, on the other hand, if you feel like your symptoms aren’t bad enough to warrant things like this. I’m admittedly horrible about this. I say to myself all the time, ‘Well I haven’t had any pain in a little while. I probably don’t need that follow-up appointment’, and then, sure enough, the pain comes back. If your condition is chronic in nature consistency is key.” (Kaitlyn)
• “Move your body. For those with chronic illness, it may be as simple as sitting up in bed and breathing deeply.” (Kafi)
• “Invest in a quality reusable heat pad. I got one from Walgreens for about $15 and it does wonders. Mine is electric but there are also aromatherapy ones that go in the microwave.  Try to find one that’s easy to clean. The one I got has a cloth cover that I just toss in the washing machine. In a pinch, soak a wet wash cloth or small towel in hot water and put it over whatever parts of your body are sore. Great for menstrual cramps too!” (Kaitlyn)
• “Think of all the tremendous things your body is doing right instead of beating yourself up for the things that aren’t working so well. Focusing on the positive things and expressing gratitude (even if it’s just in your head) changes your entire perspective and boosts your mood. Yoga is an excellent tool to grow this skill (plus it’s a gentle way to exercise). There are tons of guided meditations or even hypnosis videos on YouTube that focus on body positivity. Even if they aren’t specifically for your illness, they can be helpful to cultivate an optimistic attitude about your body.” (Kaitlyn)
• “Drink water/Take a bath.. It seems simple but, when you’re dehydrated it’s difficult for your body to heal or even maintain your new normal.  A healing bath has given respite even when my pain levels were off the charts.” (Kafi)
• “Don’t keep friends who don’t listen to your needs/limitations or try to able-splain you.  No one has time for bad friends.  Let them go.” (Currie Lee)
• “Remember that self-care is an important investment. This investment requires time, money, and energy. Allow yourself to invest in self-care.” (Erica)

Now that you know what self-care is, what will YOUR Sundays (or whatever other day works for you) look like? Tell me in the comments!