Living with chronic pain or illness is difficult, no doubt. When I was first diagnosed, my kids were 2 and 4, and life was chaotic. I was exhausted all the time and found very little support. I felt like a fish floundering on the sea shore and had to learn a lot of things the hard way. Now that my kids are 11 and 13, I still feel like I am learning things the hard way. I wish I could say I figured out how to handle life with grace and wisdom, but that is rarely true. There are some things I have learned, though, that I can share which I hope will be an encouragement to you. The following ideas are a continuation of my last post, “How To Live Well With Chronic Illness.” I hope they are a help to you in your own journey.
Keeping a clean house can feel overwhelming and can be exhausting, so don’t try to clean everything all at once. Try cleaning one room for 15 minutes only. Rest for 30 minutes, and then work for another 15 minutes in another room. After repeating this cycle a few times, you will begin to see progress, and that will make you feel good. Remember, it doesn’t have to be perfect, and you don’t have to be perfect either.
Continue the activities that make you feel good, and don’t feel the need to continue those activities that make you feel bad or drain your energy. Doing things just to satisfy others’ expectations may not be worth it in the long-term. This is your life you are living, not anyone else’s, and trying to constantly meet others’ expectations may deplete you. Decide which things are important for your life, and do those things. Don’t spend a lot of time with people that deplete your energy, either. Invest in the relationships that are important to you, and let the people go who are not helping you be the person you want to be and live the life you want to live. You only have a certain amount of energy, so you must use it wisely.
Consider asking for help when life gets overwhelming. There is nothing wrong with hollering “uncle” when you need help. There have been times when I asked one of our favorite babysitters to help organize the kids closets or help with folding laundry (for pay, of course). Sometimes I even asked her if I could just go take a nap instead of going anywhere while she watched the kids. (She was a true gift from God and didn’t mind providing the help I needed.) Another idea is to swap babysitting with another mom so you can have a few hours off without having to pay a babysitter. And when you have some time to yourself, don’t clean the house! Rest, read a good book, or take a bath. Don’t feel guilty for indulging yourself when you can!
Find something that gives you a sense of purpose and joy, and do it. It could be scrapbooking your memories for your grandkids, or volunteering to help your child’s teacher with simple tasks. Whatever it is, spend time each day doing it. It will fill your life with purpose and keep you busy on the days when boredom or depression try to creep in.
Chronic illness has a profound impact on your parenting, so don’t be afraid to ask for help. It is easy to let life become all about you when you are sick, but if you let this happen, your children will suffer. Continue to plan birthday parties and special activities for the kids even when you don’t feel well. Let them participate in sports or extracurricular activities. Do as much as you can so that your kids don’t have to take on responsibilities not meant for them. Try not to complain and burden them with the difficulties of chronic illness. They will be affected enough as it is, so go out of your way to make life as normal as possible for them. Believe me, I know this is not easy. You may even want to consider family counseling (as we have) to help all of you cope with the realities of chronic illness.
Statistically speaking, many marriages don’t survive tragedies like chronic illness, but your marriage doesn’t have to be one of those that doesn’t make it. Do whatever you have to do to keep your marriage first. Your partner will spend a lot of time caring for you, and you must make his/her needs a priority in your life, as well. Take into consideration how your illness is affecting your spouse and try to understand his/her point of view. Communicating openly and regularly can go a long way towards helping your marriage survive. Again, consider counseling to help you both cope with the demands of chronic illness on a relationship.
Schedule rest into your day and regular routine. Learn to pace yourself and not over-do it. Pushing yourself past your limits on a regular basis will cause flare-ups that will greatly reduce your quality of life. Pacing yourself and scheduling rest days into your routine will allow you to continue your life activities as much as possible. Choose which things are really important and keep doing them. Phase out the things that are not greatly contributing to your quality of life.
Find an online or local group to meet with regularly that can give you the support that family and friends cannot provide. Only people who have an illness can understand the realities and needs of having that particular illness, so don’t expect your family and friends to be able to provide that support or to understand what it’s like to deal with your illness/pain. Finding a group of friends will be invaluable to you as you cope with chronic illness.
Remember that even though it may feel like it, God has not abandoned you. He wants to help you experience peace and joy despite life with chronic illness. He has given us promises that can encourage and sustain us for the long haul. Relying on these promises is how I personally find the strength I need for each day, and I know that God can help you as well. Read Psalms in the middle of the Bible each day. It is filled with encouragement and promises and was written by men (through the power of God) that were well-acquainted with difficulty and pain. I like to write out the promises I find and post them where I can see them regularly so I can remember them and find renewed confidence and hope for each day, each hour, and each minute. Doing this can help you find the peace and joy that can be so elusive for those living with chronic illness. Relying on others or on “things” to bring that peace and joy will ultimately be fruitless, but relying on God will bring peace and joy that will endure no matter the circumstance.
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Learning to take life one day at a time is probably one of the biggest lessons I have had to learn. It is also one of the things that has helped me the most. I simply refuse to look too far ahead because life feels too overwhelming that way. Taking things one day at a time will require you to dump the worrying habit. I once heard Dr. Phil say that worry is a way of trying to control the future. Once you realize this, you can give the control over to God and let Him be in charge. God tells us that we can give all our worries to Him because He cares about us. (2 Peter 5:7) When we give Him our worries, we can rest in both body and spirit.
Laurie Miller is an author wife, mom, registered nurse, and patient with chronic illness. She enjoys spending time with family, reading, and blogging at godlivingwithchronicillness.com.