It felt wrung out and hung to dry. My arms and legs felt like I was walking through cement. Even though I had slept seven hours and woken up at 6:00 AM but by 9:00 AM, I wanted to go back to bed. I felt awful, and the thought of facing my day and doing all I had to do was too much to handle.
In addition to being tired and feeling awful, I felt many emotions but couldn’t pinpoint the problem. So I looked at my feelings wheel to identify what was going on. I identified feeling rushed, overwhelmed, out of control, sleepy, busy, stressed, tired and inadequate.
Why? The day ahead was stressful. It was overwhelming with four zoom meetings, grocery shopping, and a dentist appointment on my calendar. Also, my mom, who has dementia, was coming over with her caregiver for a visit. Was it a lack of sleep or fatigue?
The importance of sleeping well with a chronic illness or autoimmune diseases
Sleeping well with a chronic illness is a big issue because even though we suffer from fatigue and lack good sleep, we can’t get good sleep due to pain or discomfort. It’s a never-ending cycle. Unfortunately, we are stuck in the spin cycle of lack of sleep, anxiety, stress, and pain, which keeps spinning around and around into an endless cycle of fatigue – feeling tired all the time.
Almost all autoimmune sufferers I have worked with flat-out tell me that they do not get enough sleep and do not prioritize sleep. For example, many can’t fall asleep because they are using electronic devices in bed. Or some easily fall asleep but wake up often at night and have trouble falling back asleep, reverting to their phones or electronic devices to pass the time. More on blue light later.
Sleep is essential for everyone and especially those with existing conditions. In addition, the lack of sleep can play a role in other chronic conditions such as Alzheimer’s, cancer, heart disease, depression, obesity, diabetes, and other chronic illnesses. Suffice it to say, those with pre-existing conditions need more sleep than those without existing health conditions.
Sleeping well with a chronic illness is critical in managing our body, mind, and spirit. Sleep repairs our damaged cells and gives us the energy we need to perform daily activities, face challenges, and make wise decisions. Think of sleep as deep cleaning and washing cycle for your mind and body. You are clean, renewed, and refreshed when you wake up after a good night’s sleep.
Is it a lack of sleep or fatigue
In my example above, was I suffering from lack of sleep or fatigue caused by something other than lack of sleep? I was feeling drained and burned out. Having to face my day was an exhausting feeling that had nothing to do with inadequate sleep.
I was suffering from anxiety and depression around the stress I had to manage throughout the day. I say this to point out that people who suffer from autoimmune diseases or chronic illnesses suffer from fatigue caused by lack of sleep or many other factors.
Sometimes we may do well with our sleep, but daily challenges can disrupt how we perceive our tiredness. However, prioritizing your sleep is one of the ways you can self-manage your autoimmune or chronic illness. Just remember to practice managing both your sleep and fatigue. Please check out other posts about healthy living with autoimmune disease.
Awareness and management of fatigue and sleep
Sleeping well with a chronic illness requires you to become aware of your body, mind, and spirit by tracking your sleep, stress, pain, daily activity, and nutrition. See my blog for the best diet for autoimmune disease for nutrition tracking help. You can’t address the actual problem without self-awareness, as in my example above. I could have taken a nap but still felt awful because I didn’t address the underlying reason.
When you lead with self-awareness, you can address underlying issues causing fatigue or lack of sleep.
After recognizing and realizing the underlying reason why I felt so drained, I journaled how my thoughts, prayed about my day, and handed over each part of my day to God.
28 Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. 29 Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. 30 For my yoke is easy to bear, and the burden I give you is light.”
–Matthew 11:28-30
By the end of the day, I didn’t feel tired after doing all my tasks. So, my answer wasn’t to go to bed earlier but to deal with being stressed and overwhelmed.
Sleeping well with a chronic illness while on a roller coaster
Another issue to address is that those of us who have chronic illnesses have different energy levels daily. Sometimes our bodies are ready to take on the world, and other times our bodies say, “no, not today.” Living on the roller coaster of chronic illness comes with the acceptance that we won’t always feel full of energy.
I have met many people (myself included) who want to have their old energy levels back. They want to be “normal” again. I understand. Unfortunately, it’s essential to consider that you may need to slow down for this time in your life.
Perhaps slowing down is just for a season, and you’ll be back to your normal activities or possibly slowing down is just what you need so you can be more energetic when you need to be when it is important to you.
Prioritize sleep
Sleep is vital to help you self-manage your autoimmune disease or chronic illness. Being intentional about getting good sleep will change your life.
The Sleep Foundation recommends adults aim for 7 – 9 hours of sleep. They also provide a range of appropriate hours of sleep, which can be between 6 – 11 hours. Anything below or above that appropriate range is not recommended. I think those with chronic illnesses should aim to get more than 7 hours of sleep a night. Remember, our starting point is lower than the person without a pre-existing condition.
20 Tips for prioritizing sleeping well with a chronic illness
Prioritize your sleep so much that your first goal of the day is to get good sleep at night. Then, try these sleep tips from waking to sleeping.
- Wake up at the same time every day. Be sure to maintain a consistent sleep schedule, even on the weekends. Setting a regular sleep schedule will help your body and mind develop a natural pattern that signals you when it’s time to wake up and when it’s time to wind down each day.
- Make your bed every morning.
- Create a bed and bedroom you will love because you will spend eight or more hours in that room. Do not use your bedroom as an office, storage space, video gaming, or playroom. You should look forward to going to bed!
- Get a new mattress if possible. Many people with chronic illnesses have pain. A new bed with memory foam or an adjustable base may be just what you need to help you sleep better. If you have a mattress older than ten years, consider buying a new one if possible.
- Start your day with a dose of natural sunlight. Natural sunlight will trigger your body’s wake cycle. So, if possible, do some light exercising, walking, or stretching in the morning outside to help you sleep at night.
- Stop drinking caffeine after noon. Caffeine stays in your system for hours, and even though you may not feel wired from caffeine, it can still affect your sleep.
- Stop drinking alcohol four hours before bedtime. Your body will not sleep well with alcohol altering its state of being.
- Limit water intake after 7 PM. Try to drink most of your water during the day. Limiting water intake to just a few sips at night will help you not have to get up at night to use the bathroom.
- Eat a minimum of two or three hours before bed. If you eat before bed, your body is still trying to process the food in your stomach, which will take away from a quality night’s sleep.
- Limit naps and time spent napping. A short power nap may help you recharge but make sure it is less than 30 minutes and done early in the day.
- Begin to prepare for sleep two hours before your scheduled sleep time. Your preparation time will signal to your body and mind that it’s time to wind down, relax, and recharge your batteries.
- Beware of blue glare before bedtime! Bedrooms are for Sweet Dreams, not Bright Screens. Turn off all screens one hour before bed and minimize electronics in the bedroom. Smartphones, laptops, and other electronic devices emit blue-enriched light that can trick your brain into stopping the production of the sleep hormone melatonin because it thinks it is sunlight or daytime and it’s time to wake up.
- Purge your worries and to-do items. Rumination is the enemy of rest, so keep a pen and paper by your bed to write down what’s bothering you – then throw it in the trash. It’s called discharging your thoughts.
- Lower the temperature of your bedroom. Experts believe the optimal sleeping temperature is 65 degrees Fahrenheit which is very cold for me but the lower, the better.
- Keep your room dark. If you do need night lights or some light make sure the lights are soft and muted
- Make your bedroom as noise-free as possible. Shhhhhh…. sleeping.
- Use the right pillows. If you sleep on your back, use one flat pillow for your head. Please do not raise your head so much that it restricts your breathing. If you sleep on your side, use one thicker pillow to align your neck and body. Also, for side sleepers, use a regular or knee pillow to align your hips and knees. Proper alignment of your body will alleviate and prevent pain in your back, hips, and legs. Also, proper alignment allows the blood to flow through your body freely.
- Go to bed at the same time every day, even on the weekends. Again, you are training your mind and body that it’s time to rest, renew and recharge.
- Achieve a relaxation response once in bed by practicing these strategies. The ability to settle your mind is a skill that you must practice.
- Go to your happy place. Use your imagination to dream up a relaxing scene, such as walking on a beach or being in a cabin in the mountains.
- Learn and practice deep breathing. You can use deep breathing to help you fall asleep faster and to go back to sleep if you wake up in the middle of the night. For more information on deep breathing, see my blog post on how to Manage Stress and Live a Peaceful Life With These 7 Tips.
- Get up if you can’t fall asleep after 30 minutes. Get out of bed, drink a sip of water, use the bathroom, and do some light reading. Try to reset your body and mind from the frustration of not being able to fall asleep quickly.
Practice sleeping well with a chronic illness
A good night’s sleep can give us the mental and physical energy and awareness we need to manage our chronic disease and carry out our everyday tasks. Your sleep won’t get better overnight (pun intended). Because building a sleep routine and incorporating these tips will take time. It will take repeatedly practicing these tips daily until you no longer must think about it. But, once you’ve established a pattern, your mind, body, and soul will do what God intended from the beginning of time.
Do one small thing to get better sleep tonight and every day after, and practice, practice, practice.