Chronic Fatigue: A Legitimate Health Issue
I have started this blog after going on a very difficult journey this year. I hope that perhaps it might help someone who reads it. Little is known and said about chronic fatigue syndrome. In fact, it was once joked to be the “yuppie syndrome”. Many doctors dismiss it as nonsense, while others call it “just life” or, in my case, “the four kids syndrome.” After what I’ve gone through, as well as several of my close friends, I know chronic fatigue to be a completely legitimate and debilitating syndrome. What little I have found on this issue has been rather disorganized and confusing, so I hope that I can put it into simple terms. I am certainly not a doctor and do not claim to be. I am simply a mother of four kids who suffered for nearly a year from this and now want to help others. I’ve spent nearly a year researching what little is written about CFS online and in books and have compiled some information I hope might be helpful. I pray that no one will have to suffer as I did, as it was truly the worst thing I ever went through in my life!
What is Chronic Fatigue Syndrome?
Chronic Fatigue Syndrome is a debilitating condition in which the body becomes extremely fatigued from too much stress, poor nutrition, and/or stresses/toxins in the environment. To understand chronic fatigue, you must first understand adrenal fatigue. Most people are not aware of a very important gland in our body called the adrenal gland. Located just above our kidneys, this gland’s job is to regulate the stress hormone, cortisol. If you have not heard of the adrenal gland, most likely you have heard of adrenaline. We talk about having an “adrenaline rush” when faced with a scary or particularly stressful situation. One doctor gives the example of using our adrenals to fight tigers. Now, most of us will never be faced with fighting a tiger in our lives, but just imagine for a moment that you are. How will your body respond? Your heart will start racing, your eyes will dilate, blood will pump through your body, and your senses will all be on full alert as you try to escape this dangerous predator. Now, imagine fighting this tiger on a daily basis. He simply will not go away. He follows you around day and night, causing your body to stay in a state of heightened adrenal activity. This “tiger” may be a stressful job for you. It may be an eating disorder that you’ve struggled with for years. It may be caring for a dying loved one for a long period of time. Any circumstance involving prolonged stress can lead to CFS.
Don’t We All Have Stress? We live in the 21st Century!!
Yes, we most certainly all have stress in our lives. In fact, it would be nearly impossible to live a completely stress- free life unless we moved to some remote mountain town and sat watching the wildflowers grow all day. We have children to run to various activities, social lives to keep up with, and stressful jobs to maintain. We have Blackberries we can’t stop checking, commutes that drive us batty, and deadlines to meet! You probably meet someone on a daily basis who declares, “I’m just so stressed out!” Then, of course, there are the good stressors: Planning a vacation, the birth of a child, a wedding, buying a new house. These may be happy things, but they can also prove stressful. So, it seems stress is inevitable. Is it not assumed that everyone in their lives will get chronic fatigue syndrome then? Not necessarily.
The difference between being stressed out and getting chronic fatigue syndrome is UNRELENTING stress. When the adrenals become accustomed to dealing with this stress day in and day out for a long period of time, they simply grow overworked. Thus, various parts of our body become affected.
What are the Symptoms of Adrenal Fatigue?
Adrenal Fatigue is the first step in chronic fatigue. Most adults will experience some sort of adrenal burnout in their lives. Prolonged adrenal fatigue leads to chronic fatigue. In a nutshell, the body goes into shock at this stage, as it can no longer cope with its stressors. The cardiovascular system is compromised, which leads to problems with the digestive system, the immune system, and our hormones. It is believed that some people inherit a weakened adrenal gland, which makes them prone to CFS. In other words, two people may experience identical stressful circumstances, but if one has a weakened adrenal gland, he will be more prone to get CFS. In many cases, if a female has CFS, chances are, her mother may have it/have had it as well. Here are just a few symptoms you may experience if you have adrenal fatigue:
Sinus infections/other infections that linger
Severe allergies
Brain fog
Poor digestion/bloating
Headaches
Weight gain or stubborn fat, especially around the abdomen and thighs
Pain in middle/lower back
What are the Symptoms of Chronic Fatigue?
As our adrenals become more and more worn out, this leads to chronic fatigue. Our bodies are now at a stage where they can no longer fight the tiger; they are now screaming for help. Thus, the following symptoms may result:
Eye twitching/muscle spasms
Severe digestive issues (Including Irritable Bowel Syndrome)
Sensitivity to Light
Debilitating fatigue that is not helped by rest/periods of extreme exhaustion
Hypoglycemia
Low Body Temperature
Low Blood Pressure/Dizziness when standing from a sitting position
Panic attacks/depression
Is Chronic Fatigue Caused by Epstein Barr Virus or other viruses?
Not necessarily. Though I tested positive for this virus, I later learned that 95 percent of all adults have had this virus, which remains dormant in our systems for life. It can activate itself when the body is in a weakened state, which is mostly likely what happened to me.
Is Fibromyalgia Related to CFS?
I believe that it is. Fibromyalgia, a condition in which a person experiences fatigue and weakness/pain in their muscles, falls right in line with CFS. It is again one of the ways our bodies respond to excess stress. Fibromyalgia is a highly misunderstood condition that many doctors use as a “blanket” term when they cannot diagnose anything else “legitimate”. It is, of course, legitimate and very debilitating. I personally do not know much about this side of CFS, as I did not experience these symptoms, but I do believe that, no question, it is related to adrenal fatigue.
My Story
I’d like to share my story with you. Perhaps as you read you will see a bit of yourself or someone you know in it. If you do, I hope that you feel encouraged, because there is hope!
I am a 32- year -old mother of four children with ages ranging from 12 years to 3 years old. To go back to the beginning of my stress, I’d have to start in high school, I suppose. I never declared that I had an eating disorder, but I certainly thought about food way too much, as many teenage girls do. I began to go without meals here and there during my senior year, and eventually got below 100 pounds. (I am 5’ 2” and normally 110 lbs) I remember my hair beginning to fall out and feeling very light headed, but I didn’t think much of it. When I did eat, it was usually some sort of very sugary substance, such as milkshakes, gummy bears, and Captain Crunch cereal! (Seriously!)
When I turned 19, I got pregnant with my first son, and gave birth to him two weeks before my 20th birthday. This was a stressful situation in itself, as I was now trying to juggle school, work, and a baby, on top of dealing with the emotional aspects of being a single parent.
I married my dear husband when my son was nearly four, two weeks after graduating from the university. I carried a whopping 24 units my last semester of college, all the while juggling wedding plans, a child, and preparing for a move down south.
I immediately became pregnant with another child after we married and began a teaching job part- time. I gave birth to a boy, and seven months later, found myself pregnant again…a girl this time! (Yes, I did know about birth control J ) In the meantime, I quit my teaching job, we moved, and my husband changed jobs a couple times.
I gave birth to our last child, another boy, in January 2005. He was born premature and stayed in the NICU for ten days, which was very traumatic for me. At the same time, two of our closest friends divorced under terrible circumstances and I began to suffer terrible postpartum anxiety and depression. When my son was only 5 months old, we moved to Arizona to buy our first home. The stress only escalated from there.
After our move, I noticed some severe behavioral problems and tics in my oldest son. After a year and a half of doctor- hopping and crying myself to sleep every night, we finally found a doctor who diagnosed him with Tourette Syndrome and prescribed him medicine. The agony of not knowing his condition and dealing with these behavioral problems left me completely depleted and stressed out.
Meanwhile, my baby suffered from gastric reflux and spent the first year of his life screaming and crying. It was nearly a year before he was diagnosed. You can imagine the state I was in at this point: building a new home, dealing with a special needs child and another sickly one on top of my own severe postpartum anxiety and depression. All this without any family help as I still tried to juggle my every day duties.
At this point, I began to start to let myself go. I stopped caring how I dressed and ran around in sweat pants all the time. I also began to stop eating properly. I would go an entire day without eating a meal, only to get to bedtime and wonder why I was so exhausted and “out of it”. Finally, in the spring of 2007, I had a severe wake up call.
I went to the doctor because my hair was falling out rapidly. I thought perhaps I had a thyroid disorder, which can be known to cause hair loss. The doctor called with my blood test results the next morning sounding very concerned. “Your blood sugar was in the low 30s. You could have gone into a coma and died,” she said bluntly.
I was horrified. I had no idea I’d been treating my body so badly! I’d simply been going on autopilot for so long that I hadn’t put any thought into my health. The thought that I could have died and not been there for my four children was horrifying! I made a vow right then and there to take care of myself.
I tried to eat better, but the stress still continued. My husband learned his company was relocating, which meant we’d be moving back to California. In December 2007, I had a major surgery, and did not recover as well as I’d expected. Meanwhile, my husband moved and I stayed behind to pack. I remember crawling across the floor and nearly blacking out as I tried to throw things in boxes. Around this time, I got a call from my publishing company asking if I’d like to ghost write a book. I was thrilled, of course, but wondered how I’d juggle it on top of trying to pack and still recover from my surgery.
In February, 2008, I got what I assumed was a terrible flu, complete with a 104- degree temperature and terrible chills. This led to a chronic sinus infection that lingered even after we returned to California that month. I could not stop coughing, and my ears hurt terribly. My doctor put me on several rounds of antibiotics and steroids, but they did little to help.
This was, as you might say, the straw that broke the camel’s back. I was truly depleted and exhausted. The past crazy ten years of my life had caught up with me, and I simply could not rise above this one. I am a type-A personality and am embarrassed to say that I often wondered how others could only do ten things a day when I could do twenty. The Lord was about to humble me. Big time.
From here, things only got worse. I still could not shake the sinus stuff. I had a horrible pain and pressure in my ears that became so severe I feared I might lose my hearing. I felt like I was in a constant fog. I literally could not remember anything. Here I was trying to write this book, and I would just stare at the computer screen or my notes for hours and not be able to make a bit of sense out of it! I would walk into a store and not know what I was there for. I would begin a conversation with someone and literally not know how what to say or how to continue it. I would wander around my house, confused and dazed.
Perhaps the scariest part of this ordeal was the dizziness. I was still trying to go to the gym, convinced that getting out for some exercise might do me some good. Every time I climbed onto the elliptical machine, I’d nearly pass out after five minutes. I finally stopped going. My life became reduced to going to pick up the kids from school and going home to lie down again. The few times I tried to go to the store to grocery shop, I felt I might pass out. I was so dizzy I could not walk straight.
This whole time, I assumed I was suffering from sinus issues and hypoglycemia. I tried cutting out sugar to cure the low blood sugar problem, but my symptoms only worsened. I was so tired I could not function. An acquaintance came over to my house for a demonstration, and I nearly fell asleep while she was talking. I remember thinking, “Lord, get her out of here! I cannot have her in my house anymore!” Any form of social activity completely overwhelmed me.
Meanwhile, I was waking two to five times a night in a panic. I would run to the bathroom and pee out an extraordinary amount of water. During the day, I was running to the bathroom quite frequently too. Now I began to think perhaps I had diabetes, which frightened me terribly.
My anxiety was at an all time high. I was constantly snapping at my children and could not entertain any guests for fear I might snap at them too! I often awoke to find my heart racing and my hands shaking. My facial muscles would twitch constantly. My legs, head and arms often tingled and felt numb. The very idea that something was terribly wrong with me frightened me even more. I truly thought at this point that I might be dying.
Of course, I visited several doctors, who continued to tell me I just had sinus issues and that I would feel better in no time. I obtained several blood panels which all came back normal, assuring me I did not have diabetes, cancer, heart problems, or another serious disease. I continued to tell doctors I was totally exhausted, but they assured me I was fine. I wanted to scream, “I think I should know my own body! I am not okay!”
I finally found a wonderful internal medicine doctor who tested my hormone levels and came back with shocking results. I had absolutely NO progesterone. None! Now, without going into detail, please know that, for women, progesterone is an absolute necessary hormone. As my doctor explained it “If women would just take progesterone, they would be able to eliminate postpartum depression and PMS all together!” Wow! That sure explained the postpartum depression I suffered from for so long! She also said I tested positive for the Epstein Barr virus, which I knew little about at the time.
Finally, after becoming increasingly frustrated with different doctors who were no help at all, I began to do research on my own. I surfed the Internet for hours and talked to different people to try to get help. My friend in Oregon has suffered many similar symptoms and insisted that I was suffering from adrenal fatigue. Meanwhile, my other close friend in L.A. was suffering from chronic fatigue and was forced to leave her job for 6 months as she recovered. I began to see a parallel between our symptoms and wondered if we might all have something similar.
By now, six terrible months had passed. I dreaded going anywhere, even on vacation, for fear I would not be able to function. I hated not being able to think clearly, as I felt “stupid” around other people. I figured it was just easier to stay home and in bed, though it was difficult, as I’m a very social person.
The mornings were the absolute worst. I slept in until 9 a.m., only to still wake up completely exhausted and out of it. As the day went on, I gained some energy, but by 3 p.m., I was totally exhausted again. At night, I would sometimes get a second wind after dinner and want to stay up until midnight, but I went to bed against my better judgment, knowing the next morning would be rough.
My dizziness grew slightly better, but I still struggled when going from sitting to standing position. Once during a vacation in Lake Tahoe, I stood up at the pool and felt everything go black. It terrified me, as I’d never come that close to passing out.
My eyes began to bother me terribly. I developed floaters, or tiny spots before my eyes, which my eye doctor assured me are quite common and harmless. Still, why did they develop only after I got so sick? Hmmm? I also grew terribly sensitive to light and started wearing my sunglasses into the grocery store because the light hurt my eyes so badly! I felt I could not focus my eyes, which is a hard concept to explain, but as I would discover later, is a huge symptom of Chronic Fatigue Syndrome.
Finally, my friend in Oregon convinced me to call this amazing doctor she swore by in Pennsylvania, Dr. Neville. He specializes in chronic fatigue and has in fact suffered from it himself. I called him and within minutes after talking to him, I knew I had my answer. I definitely had chronic fatigue syndrome. Dr. Neville sent me his book, which completely explained what I had. The more I read, the more I became convinced I had CFS, but also became a bit angry that this terrible condition could be written off by so many doctors and people in society. I now no longer feel angry, but realize that most people are just ignorant and simply do not know about CFS.
It has been nearly a year since I first got sick. It’s hard to believe, as time has been a bit of a blur. I have made many changes in my life that have led me to slowly recover. Before I share these with you, let me say that I did not go into all this detail to make you feel sorry for me in any way. I simply hope that by reading my story you might recognize something in yourself or someone you know that seems familiar, and that you too might get help.
How is Chronic Fatigue Syndrome Diagnosed?
Chronic Fatigue Syndrome is difficult to diagnose. As you read in my story, many doctors simply do not understand it or brush it off as not a legitimate “disease”. I know this to be completely untrue, so getting a diagnosis is completely frustrating. Of course, it’s best to rule out any other underlying causes for your symptoms. Assuming you check out “healthy” at the doc’s office, you can move on to the next step. Start checking off the symptoms I listed above. If you have several of them, chances are you have chronic fatigue or adrenal fatigue. Doctors can check your adrenal levels through a DHEA test, but this is often times not accurate either. I had a DHEA test done and was told it was completely normal. The next step is to take a cortisol saliva test, which you can obtain by calling Dr. Neville’s healing center. This involves taking several saliva samples at four different times in the day. These samples determine your cortisol levels. Most people who suffer from CFS follow this pattern: very low in the morning, peaking with energy around 12-3, dipping around 3-6 and then peaking again from 6-11. My friend in Oregon was shocked to learn that she had none, zero, of this during certain times of the day! Another friend of mine registered at a one all day long, which is very low.
Though this testing is the most accurate, there is another simple test one can do to see if he has adrenal fatigue. Go into a darkened room and shine a flashlight in your eyes in front of the mirror. After thirty seconds, take the flashlight away and see if your eyes remain dilated. If they do, chances are you have adrenal fatigue.
Now what?
Now that it has been nearly a year and I have begun feeling better, many people have noticed and want to know what I’ve done to help myself. Let me begin by saying that there are many chiropractors, holistic doctors, acupuncturists and such who can be very helpful, but also many who would like to take advantage of your condition as well. How does one know when he is truly “healed”? I would be suspicious of a doctor who insisted you needed to take an extraordinary amount of supplements or go through an extraordinary amount of therapy to get well. I am a huge supporter of holistic medicine, in moderation. One does not need to take 25 supplements and go to five different specialists to get well. So, here is what I did to get well. Now mind you, there is no such thing as really “getting well” completely from chronic fatigue. You must treat yourself like a fragile object, ready to crack at any moment if you do not treat it with the utmost care. This is not to say there is no hope for getting well, as there certainly is hope. I just want to emphasize that it does not happen overnight, and that you can certainly relapse if you endure too much stress again. So with that said, here are a few things I’ve done to get well:
Supplements are important! I take cod liver oil, Tahitian Noni Juice, adrenal complex vitamins, magnesium and an enzyme. That’s it! Dr. Neville recommended the cod liver oil as it is one of the most potent omega-3 rich substances on the planet and has the ability to heal our cells. Noni juice has often been touted as a cure all, which it certainly is not. But it is a rich antioxidant and has definitely been known to cleanse the system and heal the body’s cells. The adrenal complex vitamins are something you can find at any health food store. They are made up of several important herbs and vitamins, including B-12 and licorice, two substances that highly support the adrenal system. Magnesium helps with digestion. I take an enzyme to help with my digestive system, as well. As I mentioned previously, most adrenal patients have a terrible time with digesting their food, which in turn leads to hypoglycemia, bloating, constipation, and even irritable bowel syndrome. The enzyme helps push things through, so to speak. I also take a natural form of progesterone cream, subscribed by my doctor. It has been a lifesaver, to say the least! I highly recommend all women get their hormones checked and take progesterone if needed. As one doctor says, “I suggest women take it for life. When they are 98, we will re evaluate.” There are no negative side effects of the cream, but it is important to get your hormones checked before just slathering it on.
Rest, rest, rest! When I was at the peak of my sickness, I required 12-15 hours of sleep a night. I simply could not get out of bed to save my life. Many books I’ve read advise trying to stay in bed until at least 9 a.m. This is because your adrenals are at their lowest in the morning. Many of us have demanding jobs and children that do not allow us to sleep in this late, but if possible, try to. As you get better, you will find that you don’t need so much sleep. I now get exactly 8 hours of sleep each night. Try to go to bed at the same time every night. You may get a second wind at 11 p.m.and want to stay up, but trust me, it is not worth it. Force yourself to go to bed, and do some deep breathing if you can. This will help relax you. During the day, nap if you can and want to. I’ve read more than once that two twenty- minute naps during the day are optimal. Lying in the horizontal position for even a few minutes helps stimulate the adrenal glands. I had what I called my “Ellen Hour” where I laid down each day to watch Ellen and read a magazine. Sometimes I fell asleep, sometimes I didn’t, but I always ended up more energized when I got up. Keep in mind, sleeping 24/7 is not going to make CFS disappear. It is important to rest, but CFS can only be improved over time, not by sleeping for the next six months.
Remove stressful situations from your life! This may sound impossible in our hectic society, but it really isn’t at all. As I mentioned before, I was always a “yes” person, trying to do 25 things if I thought I could do 20. I learned to start saying “No” to everything! I simply said, “I’m sorry I can’t help with the school play. I am recovering from a chronic illness right now.” I’ve found that most people are not sympathetic to CFS, so I prefer to use chronic illness or hypoadrenia, the technical term for adrenal fatigue. If this does not elicit their sympathy, forget them! You don’t need them anyway! Seriously. If your job environment is stressful, consider quitting. You will have to leave eventually anyway if you do not heal. If you have a friendship that is negative, bow out of it. Again, not worth it! If it helps, take out a piece of paper and write down every stressful thing in your life (good and bad). Then go back and re assess the things you can definitely remove, the things you can possibly remove, and the things you would like to remove but aren’t sure you can’t at the moment. Now, for just a moment, let me speak about spouses. Many of you may be saying. “Yeah, I just need to get out of my marriage!” Please don’t, unless your spouse is abusing you in some way. CFS puts a great amount of strain on a marriage. Most partners of CFS patients simply do not understand CFS and the effects if can have on a person. They try to be sympathetic at first, but eventually grow tired of hearing about the sickness over and over. I would often cry myself to sleep at night because I wanted to talk to my husband for hours about all my symptoms but feared he was tired of hearing about it. And he was as wonderfully supportive as they come. The truth is, any sickness is hard on a marriage. It is important to let your spouse know that this is a legitimate sickness (if you have the results of the cortisol test this will help for those sticklers who like answers in front of them) but at the same time let them know this is not going to get the best of either of you. It does not mean you have to cut out dates, sex and vacations. These things can actually be quite beneficial and relaxing for a CFS patient. So no excuses! Let your spouse know that you are extremely fatigued and that you are not the person you once used to be, but that you hope that through his or her support you can one day be again. (No guilt trips, right?)
It is difficult to remove stressful situations from your life, but it is so worth it. At the peak of my illness, I truly felt I had no friends, but I did not have the energy to even pick up the phone to call them. I did continue to call my friend in Oregon, who thankfully was a great support for me during that time. CFS can feel very isolating, and you may wonder if you will ever get better. It is a no wonder that depression is a very common symptom. You will get better, my friend! I am living proof that you will get better! But you must take these important steps. Say no to as much as you can, and learn to let go of what you must deal with. If you were once a perfectionist with your house, give it up! I stopped worrying about mine months ago. Is it worth it to worry about dust bunnies, really? Each day, I tried to decide the three most important things I needed to do. These may have been very simple and almost embarrassing: 1.) Wash my hair (seriously) 2.) Mail a bill 3.) Throw a chicken in the crockpot. I’m not joking. Some days, this was all I could do. At first, I tried to push it, but this only made me more frustrated. So I went back to the basics and stopped worrying about the rest. This is the time for your kids to pitch in, as well as your husband, or if you can afford hired help, bring it in!
Eat well! This, I cannot emphasize enough! Malnutrition is what brought many people to the point of CFS, including myself. The Bible speaks about our bodies as being temples of God. I realized that I had been treating mine like anything but a temple for the past ten years. Even if you have eaten poorly every day of your life, it is never too late to change. Start today! This is essential to your getting better. Here are a few foods I highly recommend, and a few to strongly avoid:
Eat/Drink in Excess:
Fruit and vegetables
Whole Grains
Lean meats
Decaffeinated herbal tea
Water
Eat in Moderation:
Nuts (Almonds are great)
Sea Salt (this helps replenish sodium levels, which will help with the dizziness)
Absolutely Avoid:
Caffeine!
Sugar
Refined Foods
Alcohol
I must admit, this has been the most difficult part of my healing journey. After years of bad habits, I was forced to retrain my body to eat better and make healthier choices. I began by cutting out my morning cereal, as it usually consisted of extra sugar I didn’t need. Dairy can be hard on the system as well, so cutting out milk was a benefit to my digestive system. I began making smoothies in the morning. One of my favorite recipes includes one cup of frozen berries, half a banana, a cup of chocolate almond milk (soy is not good for hormones and dairy is hard on the system) and ice. Sometimes I’d throw in a teaspoon or two of natural peanut butter to mix it up. Yum! After a few weeks, I wasn’t missing my cereal and milk at all! I invested in the Magic Bullet, my personal favorite blending system.
I am not a huge veggie girl and may never be, but I found ways to sneak them into my daily intake. I also came to love salads topped with chicken and feta cheese. But careful…sugary salad dressings can ruin things, so try low fat dressings and check the labels.
I was never much of a coffee junkie, thank goodness, but I did enjoy my once a week Starbucks splurge like anyone. Again, not worth it! My nonfat white chocolate mocha latte was filled with calories, sugar and caffeine...a triple no-no! If you must go for the joe, try decaf…it still has a little caffeine but not nearly as much. Caffeine acts as a stimulant, which seems to make sense if you are tired, but it then causes a huge dip in energy later on, causing your adrenals to have to work even harder. Soda is a poor choice as well. I hated to give up my Dr. Pepper with pizza, and admit that I still cheat and order one once in a great while, but I’ve found other healthier choices that make me feel much better. Decaf iced or hot tea is a great choice, not only for the health benefits, but because it has no sugar, is all-natural, and has no caffeine. Alcohol also messes with the adrenal system and is not a good idea. Thankfully, I am a once-a-month cocktail kind of girl, so I can live with this, though I still sneak a Midori Sour here and there. (I never admitted to being perfect, okay?)
Refined foods are very bad for the systems. This includes, unfortunately, much of what is in your pantry and mine at one time as well! Crackers, chips, cookies, cereals, breads, etc…they are all hard on the system and contain way too much sugar. Cut them out! If you want to go hardcore, try cutting out wheat and gluten all together. Many people have noticed fabulous health results from simply cutting flour and sugar, including extreme weight loss! I have tried off and on to cut flour but have found it nearly impossible, as I don’t have much willpower. However, my hat’s off to those who can go cold turkey! You won’t regret it! Thankfully, many health food stores offer great choices for gluten- free eaters.
As most CFS patients are hypoglycemic and struggle with digestive issues, it is important to eat small meals throughout the day. Never skip a meal! Here is a sample of my typical day:
Breakfast: Fruit and almond milk smoothie
Morning snack: Piece of cheese or a few almonds
Lunch: Chicken salad
Mid afternoon snack: Almonds, cheese or a peanut butter apple
Dinner: Chicken, burger, or soup
Dessert: Frozen berries and fat free cool whip
Stay positive and proactive. Even at my lowest point, I never gave up hope that I would feel better. I prayed constantly, asking God to heal me. He did not choose to heal me right away, but still, I did not grow cynical and give up. I treated it like a learning lesson, a journey, and even tried to find good in my situation. One day, I was so depressed, I had to write down everything good in my life. This included even the little things, like having hot running water for my bath and a bed to sleep in. It helped tremendously. If you have someone to confide in, by all means, talk to them. Do your research, but don’t let yourself get overwhelmed. I have always been a bit of a hypochondriac and found myself online nearly every night, googling my symptoms in a panic. I was convinced I had diabetes, a brain tumor, heart problems, an inner ear disease, MS, and cancer, just to name a few things. There is a ton of information online, much of which is useless and confusing. I hope that by creating this website I have taken a bit of that hassle away from you. Again, I don’t claim to be a doctor, specialist, or anyone special for that matter, but I do hope that something I’ve written will be of value to you. Seek out doctors, but be aware that most regular medical doctors are not equipped to deal with CFS. Hormone doctors are great for diagnosing hormone issues, which is a very common problem in CFS, so I recommend a visit to these by all means. Do not try scurrying all over the state in search of the “best doctor to cure it all” though. Many claim to be the best, but only a few really are. I personally believe Dr. Neville is more helpful and more knowledgeable than anyone I know when it comes to CFS, as he suffers from it himself and has spent a lifetime researching it. I recommend skipping the steps of visiting a hundred other doctors and simply making a phone call to him. It will be well worth your time! And finally, don’t give up on your quest to get better. You will get better, but it just takes time. My recovery took nearly a year, and I still struggle with symptoms here and there. Some recoveries take longer, some shorter, depending on the severity of the adrenal fatigue. But no one has ever died from CFS, so take heart!
6. Exercise...in moderation! The last thing you may feel like doing is exercising, but it is important to do just a little each day if you can. I found that walking was helpful, when I had the energy. Try exercising when you feel well. If this means taking a walk at lunch or after dinner, than by all means, do so! You don’t need to and don’t want to over- exert yourself, but exercise has a myriad of health benefits, and is known to help with depression and fatigue, so it is well worth the effort. If at any time you feel too dizzy or fatigued to continue, of course, stop what you are doing immediately. I have tried adding things into my routine as I feel better. I now lift weights and attend aerobic classes, but there was a time when all I could do was walk around the block. That’s okay! You don’t have to be a superstar or prove yourself to anyone. The goal is to get better. Now is not the time to try to look like Madonna.
Be selfish! I know, this sounds crazy, heretic even. But hear me out. Your body has undergone immense stress. You are now in a very fragile state. The only way to not upset that fragile state is to treat yourself like a baby, pampering yourself to the fullest degree. Believe me, this is much easier said than done. As a mother of four, I find myself constantly giving and giving to my children. Most mothers adapt the “martyr” syndrome, saying something like, “But there is simply not time to take care of myself. The kids come first.” Remember the old saying, “If Mama ain’t happy, ain’t nobody happy?” It’s true! Whether you’re a mother or not, you need to grasp the importance of self-care. Now is not the time to be the giver. Of course, this does not mean neglecting your children or basic duties in life. But it does mean it’s okay to take the time to take care of yourself. This was probably the most difficult concept for me to embrace, as it does not come naturally to most of us, especially mothers. All it took was seeing a picture of myself nearly a year ago though to remind me of how important it is to care for myself. My hair was thinning, I was terribly skinny, my face was sunken in, my eyes hollow, my skin broken out. It was not a pretty picture at all. I never want to look that way again. So I’m willing to take the time out for me to get well! This includes taking naps, taking the time to sit down for breakfast, lingering in the bathtub with a good book, laughing at a silly movie, and going to dinner to vent with a good friend. I realized that by habit I had a tendency to sometimes go weeks without eating breakfast. I now make it the number one priority of my day. I take my supplements, make up my smoothie and sit down at the computer to check my e- mails. If my kids bother me, I say, “Sorry, this is Mommy’s time. It is important for Mommy to take care of herself. Then she can take better care of you.” I sometimes get frustrated with preachers and speakers who take Proverbs 31 a little too seriously. I love the passage in the Bible, but I don’t think that we were truly mean to work from sun up to sun down. Even Jesus rested on the seventh day! I think we need to strike balance in our lives. For me, this includes a mixture of spirituality, family time, physical needs and lastly, social needs. This may include different things for you, but the point is to stay balanced. The minute we become unbalanced, we become fatigued and resentful of our lives. It is not a healthy place to be. Last weekend at church, my daughter’s sweet Sunday School teacher hinted that she needed an extra teacher in the classroom. I nodded and smiled and told her I’d pray God would provide one. Perhaps she thought this would be me, but I had no intention whatsoever of falling into the “yes” trap again. Does this mean I’ll never volunteer for something again? No. But right now my only goal is to focus on getting better so that I can one day give back. Don’t let guilt overwhelm you! We’ve all spent time giving in our lives. Now is not the time to give. It is the time to take as much as you can. I mean it! You can do it!
Laugh! I know this sounds so trivial, but I found laughter so helpful during my battle with CFS. Proverbs speaks about laughter being like medicine for the soul. Truly, it is! I took up a collection of funny books, movies and TV shows to watch and read. Laughter produces endorphins, or “happy hormones.” You simply can’t get enough of it! I also made up a “Happy Box” in which I put clipped out cartoons that made me smile, silly photos, and cards friends and loved ones had written me. When I was feeling especially down, I took my box out and flipped through it. It never failed to bring a smile to my face.
My progress Report: Nearly one year later
I shared my story with you up to the point of starting to get better, but I then left you hanging. I’ll let you know how I’m now doing, nearly a year after CFS fully kicked into high speed. I still eat healthy (though not perfectly) and still exercise when I can. I sleep 8 hours a night and try to always do no more or less. I no longer nap in the afternoons, but sometimes lay down for a few moments when the kids get home from school. I have started getting out again, joining up with social activities that do not stress me out. Notice I emphasized do not stress me out. Playing Bunco, hanging out at the beach, or going to coffee with an old friend are not stressful activities for me. However, last week, I volunteered in my son’s classroom, and found it to be quite stressful. I had the simple task of filing papers and putting them into kids’ folders. No problem, right? Guess again. I had only 45 minutes to get the task done, and as time ticked away and I saw that I was not going to get all those papers in those folders, I began to panic. I know it sounds so silly, but if you are suffering from CFS, and my guess is you are if you’ve read this far on my site, you will understand. Finally, the teacher asked, “Do you need some help there?” as she saw I was not going to finish in time for the final bell. I nodded, having flashbacks of working fast food and not mopping the floor in time for the lunch rush. Again, silly, I know, but a fine example of a situation I should not have tackled. My anxiety kicked in, my heart began to race, and I found myself on the verge of tears. I thought to myself as I drove home, “I can’t even file stupid papers in a 2nd grade classroom!” Perhaps you’ve had a similar situation. Don’t feel bad. Remember, you’re fragile, ready to snap at any given moment. It was a good learning lesson for me, a good reminder that I don’t need to tackle anything that might be even remotely stressful. Despite keeping my activity level to a minimum, I have regained a functioning mind and memory, something I feared I might never have again. Perhaps the most frightening thing in this whole journey was the idea that at 32, I might never be able to have a coherent thought again. I still lose my keys on occasion, but for the most part, I am a functioning human being again! I no longer avoid talking to people because I can’t think of anything to say (or forget what they’re talking about mid- conversation) and sometimes I even have a smart, rational thought to contribute! I feel happy and energetic most of the time. I am still rather groggy in the morning (aren’t we all!) but as the day progresses, I find that if I eat right and don’t overdo it, I feel like my old “normal” self. I remain cautiously optimistic though. If I’ve learned one key principle in all this, it is to strike balance and not overdo it. Many CFS patients complain, “I have three good days and then one bad day.” That’s probably because on the good days they overdid it and then paid for it days later. Again, not worth it! If a good speed for you is a 4, stay at a 4 all the time. Don’t try to rev your engine up to a 5 or a 6. It’s not worth it, and you’ll regret it later when you crash! My eyes still bother me some, and my floaters have not gone away, which is annoying but not devastating. I still wear my sunglasses in the grocery store and have stopped worrying what other people think of me. In fact, I’ve seen other people wearing theirs in the store too, which makes me feel a little better! I no longer have any dizziness, thankfully. There are days that go by when I feel like I’m completely over the hump, which are the days I have to slow down and remind myself that I’m still a fragile patient and must continue to treat myself like one.
Silver Linings
As strange as this may sound, I am so thankful I went on this journey this past year. I feel like it was a blessing in disguise, a gift from the Lord. The old me cared about what people thought, was a type-A people pleaser, and made little time for myself. I was often grumpy and snappy because I tried to cram too many things in a day. And though I was around my children constantly, I rarely spent quality time with them. The new me could care less what people think of me. If they snub me behind my back for dropping the ball with something, I shrug or laugh it off. I can now look at the world as an outsider, feeling sorry for those who try to do too much, probably because they hope to gain some sort of fulfillment or to get people to approve of them or think they’re special. I now spend more time with God, which I regret I didn’t do sooner. During the times when my CFS was so bad I could not even read or open my Bible, I spent an immense time in prayer, reflecting on my life and the choices I’d made. It was a wonderful time between God and me. I suppose I could have gotten angry with him for “giving” me this sickness, but instead I saw it as a blessing. He knew I needed to slow down, and this was the means to get me to do it. I now spend more quality time with my kids, reading in bed, cooking in the kitchen, and riding bikes outside enjoying the fresh air. If the house doesn’t get cleaned or we have to eat Mac n cheese three days in a row, no one complains. If I want to lie down and read a magazine, I do so without an ounce of guilt. And if I want to nap (which I rarely do anymore) I nap! It is a wonderful, freeing feeling! And, because I once truly thought I was dying, I now appreciate good health and thank the Lord every day for healing me. My marriage is also stronger because my husband and I have weathered this journey together. And my friendships are with quality people who lift me up and don’t bring me down. I no longer care if I have two hundred acquaintances. I’d rather have five close friends who understand me and can offer sincere encouragement or a good laugh. All in all, I’m happier than I’ve ever been in my life. Does that mean I’m happy I got CFS? Not necessarily. But I’m happy with how it changed my life, and if this was the means to do it, then I’m glad. God always knows what he’s doing, even when his ways remain a mystery to us!
In conclusion, don’t give up! You will get well! Seek out help and make the right choices to ensure a healthy, happy future for yourself. You are not alone! I hope that I’ve been a friend to you, a little encouragement, a bright spot in your cloudy day. CFS is not the end of your world! You will come out ahead, I promise, my friend!
If you have any comments or wish to share your successes or struggles with CFS, please comment or e-mail me at Karenkoczwara@gmail.com. I’d love to hear from you!
Recommended website: Dr. Neville at www.chronicfatigue.org
