Things Not to Say to Someone With Chronic Fatigue

Here is a convenient list if you know someone who has chronic fatigue or a similar issue (adrenal fatigue, fibro, etc.)

1. "I get tired a lot too."

The reason chronic fatigue exists as a term stems from the medical diagnosis of prolonged fatigue that is not alleviated by rest. You may get tired a lot, but a person with chronic fatigue gets tired often and no amount of sleep or rest makes it any better. So, no you don't feel like we do. We also have other symptoms that accompany the fatigue: ringing in the ears, heart palpitations, muscle weakness, trouble thinking clearly, and other symptoms we probably haven't mentioned.

2. "You look healthy."

Now if you're just saying this as a compliment, fine. But if you say this after someone tells you "I have a chronic illness," then you really don't understand. Many people with chronic illnesses are thin because they have digestive issues and possibly hormone issues that keep them from keeping weight on. Many people appear to be perfectly fine on the outside but that doesn't mean they don't have a years-long medical problem that haunts them to this day.

3. "You seem okay right now, are you sure you're sick?"

Yes, you see us right now because we usually can tell when a fatigue or symptomatic episode is going to happen (since most of us have had these problems for years) and we decided to go out. If we know we are going to feel badly, we stay home. Most of us stay home a lot. Some of us have normal energy for part of the day, and that's when you see us.

4. "You should try this remedy I read about on the internet!"

There's a reason it's called "chronic" fatigue. It's not an acute case, we've had it a while. After months and years of only half-living our lives, we have tried everything we can imagine to get better. We also have to beware of quack-cures that might actually make us worse because our health is more fragile than other people's. So, by all means, feel free to tell us about something you read, but do not be offended if we don't do whatever that thing is. Most of us have researched our condition because once you get a diagnosis, that's where it ends for most doctors -- they don't have a treatment. We have to become our own care givers. This is why I became a health coach.

5. "Maybe it's because you're depressed?"

Depression is a real thing and it can affect your health negatively. But most of us live with depression because we have chronic fatigue, not the other way around. Don't assume that it's a simple cause and effect and if we could just "get happy" we'd be cured. I've learned to be as happy as I can with my condition, but years of barely getting by and not being able to do things you dream about are very demoralizing.

6. "You should go to this special doctor I know about!"

People with chronic fatigue spend almost all of their spare money on some kind of health care. We are either going through some kind of treatment, or we are visiting doctors and getting lots of tests to identify a new treatment. Since Western allopathic medicine has very few options for treatment, we are forced to go outside the standard medical system, and that means outside of insurance. So we spend most of our disposable income on treatments. We probably don't have the money to go to your doctor and most likely we are in the middle of some treatment already that we can't just drop and change. Most treatments and plans for this take months. Feel free to suggest someone, but once again, don't be offended if we say no.

7. "You're just lazy and like to sleep a lot."

Fine. I understand if you think this. From a "normal" person's view, I can see how it looks this way. I spend a lot of time watching Netflix and playing video games because I simply don't have the energy to get up and do things I want. Also my house is usually messy because I have to reserve and manage my energy very carefully. I have to save my energy for work and shopping and cooking, and after that if I have any left then it goes to cleaning or other things. I also do sauna and Qi Gong and things for my health. Many times I plan to do a lot in a day, but only end up doing one thing. Then I wander over to the recliner and rest there for a few hours, because it's simply all that I can do.

8. "I don't think there's anything wrong with you."

You can believe anything you want, but I can tell you, those of us with chronic fatigue don't have time for people like you in our lives. We need friends that believe and support us, we simply don't have spare energy to convince someone who is negative. You don't believe us, fine, there's the door.

How to Get Better Sleep

First of all, I feel that I need to mention how important sleep is. Studies have shown that inadequate sleep has been linked to mental disorders (1). Others have linked a lack of sleep with diabetes, weight problems, stroke, heart problems and even overall risk of death (2). Your body regenerates and heals during sleep, so if you are recovering from something or even trying to build muscle, you need adequate sleep. The fact is, most people do not get the 7-9 hours of sleep that most people need to be healthy.

Lifestyle

Probably the biggest change you can make that will improve your sleep is changing your lifestyle -- but this is likely the most difficult thing to change. If you have decided that you really need more sleep you have to make a commitment to value it enough to plan your life around getting sleep. That may mean doing less while you are awake and sacrificing certain things you like as well as changing long standing habits. Once you've decided that sleeping is important then you have to be serious. 

1) Set an alarm for going to bed. 

With my fatigue problems, I have to make myself go to bed earlier, even though nighttime is when I feel most awake. So I set an alarm about 30 minutes before bed and start doing all of my nighttime preparations.

2) Create your "sleep ritual" 

You can prepare your mind and body for bed by doing the same thing every night before you sleep. These should be comforting things. Maybe eat one bite of chocolate (but only one!) Have some relaxing chamomile tea. Put on soothing music. Turn the lights down. Don't stare at any kind of lit screens. Do some mild stretches. Put on your jammies, brush your teeth (in low light if you can.) By doing this at the same time every night you'll be training your body for sleep.

3) Have some discipline

Don't watch that 8th episode in a row of CSI on Netflix. Don't play "just one more level" of your video game. Don't make plans that will keep you out extra late. Plan ahead of time for your sleep. 

By ArtNerdEm

Mental

There's a lot of things you can do to help yourself mentally be ready to sleep. One thing that keeps people awake is the fear of not sleeping. How awful is that? Something that can help with this is learning to be merciful and loving to yourself. I know, it may sounds strange or maybe too granola for you, but let's face it: you want your brain to be on your side. Loving yourself will help you gently move away from self-destructive thoughts and fears. Accept that sometimes you have sleeping problems, and when the fear comes up about not sleeping, just think about how you want to care for yourself and let the fear go. It takes practice but it can be done. You can even establish a new positive pattern -- every time you feel the fear of not sleeping you remember to love yourself. If you have the fear a lot, you'll end up loving yourself a lot! Can't be that bad!

Meditation is a wonderful skill to learn. Many people avoid it for various reasons, thinking it's very difficult to do (some is, some isn't) and also that it is somehow "religious." Simple mind practices are not religious in nature they are just ways to discipline your mind, and most of us could sure use that!

A simple exercise you can do anytime is breath control. Close your eyes and sit comfortably. Breathe in over a 5 second count, pause for 1, breathe out over a 5 count, pause for 1, then repeat. Focus on your breathing and counting -- it will be hard for your mind to think or worry about other things. Even if you just do this for ten repetitions you'll feel different. You can do this during the day if you have a break, and also do it before bed or even in bed.

One meditation that I found incredibly useful for sleep is Yoga Nidra. Check this article for an overview of how it works. You choose an "intention" for Yoga Nidra. This can be as simple as "peaceful relaxation." 

Another way to help prepare mentally is to remove stressors from your life. It could be people, relationships, situations, the internet. or other things that you know are stressing you mentally.  If going to a website (like Facebook) often causes you stress don't go there in the evenings before bed (or maybe don't go at all anymore!) Also if watching something or talking to a certain person stresses you don't do that in the evenings either.

Physical

There's a lot of things you can do with your body to help it sleep. I'm going to cover diet and supplements in a different section, but these are more directly physical.

1. Reduce bright light exposure in the evenings. Bright light tricks the body into releasing daylight (wake up) hormones. If you have some nice orange colored lights you can use in the evening these are ideal. Also there's a great computer program called f.lux that you can download for free. It adjusts the light of your monitor after sunset to the orange spectrum to help your body prepare for sleep.

Massaging your feet is a great way to prepare for sleep, as well as light stretching in the evening.

2. GO TO SLEEP when you first feel tired. Your body is making your sleep hormones for you and you should work with them. If you push past this and stay up you might trigger another release of awakening hormones and keep yourself up hours later even if you only meant to stay up an extra 30 minutes.

3. Exercise during the day. Depending on your health of course. Most people who work full time jobs are already pretty tired from their day and don't need an intense workout added on to further wear themselves out. Light exercise is wonderful, even just 20 minutes. Exercising too late may wake you up more.

4. Delta wave music. There's a growing science behind the different waves in our brain: delta waves are identified with deep sleep. A doctor in California has created different music CDs that are said to induce these waves. I used them myself and they did help some. It seems that this works for some people and totally not for others. If you try this, you should buy the DVD and not get the MP3s. The MP3s cut out some frequencies of sound that may be important. You can get the Delta Sleep CD here. You can read about Dr. Jeffrey Thompson here. 

Diet and Supplements

Most people have caffeine every day. Caffeine causes lots of problems including mental and physical burnout -- we often give our body caffeine when it is very tired, when we are most worn out, and rev it up and make it perform. Ideally, caffeine should be totally eliminated from our diets. If you're addicted to caffeine, it may be hard to totally come off of it, but I believe it is worth it. 

Some foods, like peppers, are stimulating and may also keep you awake (as well as cause inflammation.) 

Chamomile tea is mild and good for sleep. There are other herbs that some people use but I do not recommend them because they can have other effects on the body. 

Supplements that are helpful: a magnesium/calcium blend contains the calming minerals and can help with sleep. Omega-3s are good for the brain and can increase feelings of well being and sleep.

Most people eat too much meat and not enough vegetables, switching to a diet with at least 4 cups of cooked vegetables a day can bring about great changes in health, including sleep. Many people also experience significant improvements by eliminating wheat products and sugar.

Spiritual

As a Christian, I also recommend reading Bible verses about sleep and praying before bed. I often fall asleep while praying, and I don't feel guilty about it. What a great way to end the day -- falling asleep with our loving God! I don't really know who Rachel Wojo is, but here's a nice article by her with some sleeping verses.  

I'll leave you with Psalms 4:8:

"In peace I will lie down and sleep,    for you alone, Lord,    make me dwell in safety"

(1) http://www.scientificamerican.com/article/can-a-lack-of-sleep-cause/
(2) http://www.webmd.com/sleep-disorders/excessive-sleepiness-10/10-results-sleep-loss