Parenting can be a rollercoaster of emotions and leave you worn out. Add a chronic illness to that, and you can find yourself one very stressed and exhausted parent. But how can you be a good parent when you feel like your world has come crashing down? Keep reading for tips for parenting with chronic fatigue that can change your outlook once again!
How Chronic Fatigue and Illness Change Your Parenting
Whether you have an autoimmune disease, fibromyalgia, or chronic fatigue syndrome, they all can cause fatigue, pain, depression, and frustration. Although you may not mean for it to happen, having these daily challenges can change you, your personality, and the way you parent.
Most people with chronic illness have heard of the spoon theory. Every day we wake in the morning with enough spoons in the drawer to tackle the day. Some days there are more spoons than others. What is certain is that once you are out of spoons for the day, your day is done!
Tips for Parenting with Chronic Fatigue
When you have kids, it seems like there are never enough spoons at the start of the day. Sometimes your kids have to skip activities or play dates because there aren’t enough spoons. This can lead to guilt and cause anger and frustration in your kids. So how do you manage all of it?
1. Put yourself first.
As parents, we often put our kids and others before ourselves. If you don’t take care of yourself first, you won’t have enough energy to take care of others.
It’s OK to be selfish sometimes when putting your own needs before others. If your little one has a birthday party to attend and you can’t get off the couch, it’s OK! There will always be other parties to attend. Maybe on a good disease day, you can make it up to them with special one-on-one time.
Sometimes putting yourself first means decreasing your work hours or quitting your job. Sometimes it means hiring a housekeeper or landscaper. Only you know how much can you sacrifice financially and still be ok with your lifestyle.
2. Pace yourself as a parent with chronic fatigue: take it one day at a time.
When you are feeling well it’s so hard not to overdo it on good days, especially with busy kids. When you’ve been laying around for weeks and the housework is piling up it’s easy to get swept up in the excitement of feeling good for once.
You may feel like you should tackle it all in one day because the next day you might be stuck on the couch. Don’t do it! Get done what needs to be done then rest. Set a timer if you think you might get carried away. If you have more energy after resting, tackle another task that needs to be done.
3. Let go of guilt about tough times parenting with chronic fatigue.
Yes, your kids will remember you as “always being sick” or “always laying down.” That’s OK! They may remember the missed parties or playdates due to your lack of energy, and that’s OK too!
They will also remember your love and the things you did with them when you did feel well. They will remember when you powered through and still got them to where they needed to go. And they will remember snuggles on the couch on the days you couldn’t get up.
You cannot control your illness and the path it takes, but only you can control your emotions and your outlook.
4. When parenting with chronic fatigue, remember KISS: Keep It Simple Stupid.
Since your life parenting with chronic fatigue can be filled with a lot of emotional ups and downs, doctor appointments, medication, and missed work days, it’s really important to try to simplify your life.
Maybe that means having groceries delivered or arranging a carpool with a neighbor. Whatever you can do to streamline and simplify your life will help remove the burden of the day-to-day things that need constant attention.
5. Accept help and communicate your needs.
It can be difficult to accept help when you have a chronic disease. Maybe you want to appear stronger than you really are or you want to prove that you don’t need help. The reality is, chronic disease can put you in a situation where eventually you will need help.
You may need someone to pick up your kids from school because your pain is too much that day. Or maybe you don’t have the energy to do your laundry. It’s ok to ask for help with these things, but only if you really need it.
Keep in mind that people can get caregiver fatigue if they are always helping, so it’s a good idea to rotate through your friends or family when you need that extra hand. Communicate what you need help with so they will know exactly what you need and how they can better help you.
6. Enlist the kids to help out around the house.
In my opinion, chores are never a bad thing. It provides kids with life skills, gives them a sense of accomplishment, and if you pay them for chores it can teach them financial responsibility. Even if they can take one task off your plate, it’s one less thing that you need to do to keep up with the constant demands of a household.
7. Always have a Plan B for chronic fatigue flare-ups.
With a chronic illness, you never know what life will throw at you. You may be feeling fine when you booked that family vacation over Christmas break but now you feel like crap and don’t want to go.
With plan B always in your pocket, you will be prepared with trip insurance and something else for the kids to do on break. This also goes back to accepting help. Maybe your plan B is to have a school carpool buddy in your back pocket on the days you don’t feel well so your kids can still get to school. Always plan for the worse and you will never be caught off-guard.
8. Use TV as a tool when parenting with chronic fatigue.
Sometimes you just need to rest but if you have a little one that can be hard to do. It’s ok to use TV to entertain your child so you can rest. This goes back to letting go of the guilt. Yes, of course, you don’t want to use TV as a babysitter but sometimes you just have to do what you have to do to get through the day.
If you need to lie down next to your little one and rest while they play, make sure you create a safe space with outlet covers, TV and bookcases strapped to the wall, and safe toys. Even getting a 20-minute nap on the floor next to your little one while they watch Daniel Tiger may be all you need to rejuvenate yourself for the day.
9. Prioritize sleep to help you manage chronic fatigue and have more energy to be a parent.
As a medical professional, I can not stress this enough. Delta waves occur during deep dreamless sleep and their role is to give you restorative sleep. During this time your brain essentially shuts down for repairs and reboots. This is also where the body repairs itself, promotes tissue regeneration and cell growth, releases hormones, and reduces inflammation.
Certain medications and sleep apnea can affect delta sleep. For example, benzodiazepines like Valium and Xanax can help you fall asleep but can actually decrease the amount of delta-wave sleep. Chronic benzodiazepine use can also lead to weight gain, which in turn leads to sleep apnea.
Sleep apnea by its nature causes you to constantly wake up because your brain senses low oxygen levels. If you are constantly waking, you won’t spend enough time in the various stages of sleep and you can’t progress to delta wave sleep. If you have chronic fatigue you should be evaluated for sleep apnea with a sleep study, even if you are not overweight.
There are a ton of supplements on the market for sleep, some of which may interact with your medications. Save yourself some money and focus on sleep hygiene, for example, no TV or phones for one hour before bedtime, establish a routine, and keep the room cool. You can also try apps for meditation, binaural beats, or hypnosis to help get you off to sleep.
10. Talk about big feelings with your kids.
Chronic illness can be emotional for you and often comes with depression and anxiety disorders. But kids can struggle with these things too.
A 2021 study showed that kids with parents who have a chronic illness tend to internalize symptoms such as anxiety, depression, and withdrawal, especially in girls.
Your kids are going through the emotions of chronic illness along with you. As an adult, you have the ability to articulate your emotions but most kids can not. Teens especially have a hard time articulating their anxieties and fears and may need to have their thoughts drawn out of them.
Start with open communication with your kids from a very young age. As they grow they will be used to articulating their thoughts and it will become second nature to them. If your child is older when you are diagnosed, start right away with open communication about your disease and what to expect. Don’t be afraid to enlist professional help from a child and family therapist to help them to articulate their thoughts.
11. You define your new normal as a parent with chronic fatigue.
Your life with a chronic illness will be different than it used to be. Once you figure out what you can do and what you can’t do anymore, you will set the tone for expectations. Your new normal may be walking 1 mile a day instead of running 12, but this is your new normal and only you can define what is now normal for you.
Once you determine your new normal, make sure you share it with your loved ones so they know what to expect going forward. This new normal may be fluid. During a flare, your normal will certainly look different from when you are in remission. Only you can determine what is normal for you and what will be normal for your kids.
Remember that attitude is everything as you move through your parenting years with a chronic illness. Yeah, there will be some rough days. But in the end, you will be stronger than before. Your kids will learn empathy, courage, autonomy, and perseverance as they navigate through these challenges with you. I’d like to think that these are good traits to have as an adult, many of whom will never develop them. So embrace what you have to deal with and use it to your advantage!
Photo by Ketut Subiyanto via Pexels.