Essential Self-Care Tips

As a Raregiver you are over extended and have very little time for yourself, so in order to take care of yourself and maintain your health and well-being, you need to make yourself a priority. Putting toward the top of your list can be challenging. It’s a different orientation for you since you spend the vast majority of your time focusing on your Rare child and the other members of your family.

Here Are Some Essential Tips:

Get Enough Sleep

Sleep is foundational for your physical, mental, and spiritual well-being and yet, Raregivers often do not get enough sleep and sometimes you may find yourself getting 2-3 hours consecutively at most. You are awake on and off throughout the night tending to your Rare child or perhaps you are hypervigilant and never really drop all the way into the deep sleep that you need. It can be useful to have a routine for winding down at night. Turn off your devices at least one hour before you go to bed and create a brief stretching or bathing routine so that your body knows it is time to rest. It can be tempting to stay up late doing research on your computer or catching up on insurance bills and the like. Take the time for yourself or to be with your partner before you rest. Creating a sustainable lifestyle means being intentional about how you use your very limited free time.

Nourish Yourself

It is also important to give your body the nourishing food it is craving. Many Raregivers have shared about just grabbing something, eating fast food or gobbling down your Rare child's leftovers. We've all done it and eating cold macaroni and cheese with peas will only get you so far. You deserve to eat the food your body truly desires. One option is to make big pots of soup or casseroles and freeze portions so that you can easily heat them up and have a delicious meal without a lot of work. You can also prepare salads in small containers or cut up celery and carrots and place them in water in a glass jar in the fridge. Skipping meals takes a toll on the body. Prioritize your food and when you sit down to eat. Take your time. Receive the goodness of the food that you have prepared for yourself. Slowing down and savoring your meal nourishes you deeply.

Move Your Body

You may not be able to go hiking for an hour at a stretch and you can take a 10 minute walk. Putting your feet on the earth and letting yourself breathe fresh air while the warm sun touches your face is necessary. Getting outdoors into nature is medicine for your body and soul. Right now in many parts of the country the hills are green and the flowers are blooming in oranges, purples, reds, and yellows. Being in nature provides inspiration. Take a walk and let nature caress your body, and soul.

Social Connection

Social connection is especially important for you. Raregivers often talk about feeling isolated and alone because they spend most of their time at home with their Rare child. If you are someone who is more social, you will need to enlist help from your partner, a relative or another caregiver to care for your Rare child while you go out to dinner with friends. For those who are more introverted, you may be content with a weekly coffee date with one friend where you can have deep conversations. 

Come Join Us

You are invited to join us for our weekly and monthly support groups. Our support groups are disease agnostic, and you will discover that although another Raregiver’s child may have a different Rare disease than your own, you will find that you have a lot in common with these amazing women and you can make new friends who really get you. You are welcome to drop in for a portion of the group if you cannot attend the whole thing. Come in your pajamas with unbrushed hair. Come as you are. We are here waiting for you.

You may not realize how much you need the Raregivers community until you find it.

Zoom Link: https://us02web.zoom.us/j/88974713173

We look forward to being with you soon.