My name is Catherine Morgan, I'm a writer, nurse, and mother. I'm also living with Chronic Fatigue Syndrome and other chronic illnesses. I hope this will be a site where patients, family, and medical professionals can find information, ideas, inspiration, and hope.
Bell defines CFIDS symptoms as falling into four major clusters: so-called fatigue; neurological problems (balance, cognition, paresthesias, etc.); pain (“which can be anywhere-a lot of patients have skin pain, for example, and their doctor already thinks they’re a fruitcake, so it’s one of those symptoms the patient won’t even mention to the doctor”); and multiple sensitivities.
In a disease whose formal name is (still) chronic fatigue syndrome, it’s thought-provoking that Bell disdains the word “fatigue” as a “very inappropriate term for what patients experience. It’s not really fatigue at all, which is defined as a normal recovery state from exertion, and that is precisely what does NOT happen in this illness. It’s the limiting of activity that defines this illness. Anybody who works a 20-hour day will be fatigued, but they’ll recover from it-it’s not the same thing. A typical CFS patient might function on a minimal level (housework, minor errands) for a total of 3 or 4 hours a day. They may say they’re fatigued, but what’s really restricting their activity may be pain, like headache, tremulousness, or weakness-a sense that they are on the verge of collapse. That is not “fatigue” as we commonly think of it.”
Exercise is a very tricky aspect of Chronic Fatigue Syndrome. While exercise is extremely important for overall health and wellness, it can become a “toxin” for a person with Chronic Fatigue Syndrome. That is why it is very important to find that critical “balance” of not too little, but not too much. And, each person will have a different level of what their condition can tolerate. Here is some information I came across today about Exercise and Chronic Fatigue Syndrome……
Chronic fatigue syndrome (CFS) is an illness characterized by extreme exhaustion. Other common symptoms include aching muscles, joint pains, headache, sore throat and flu-like feelings. The cause is unknown and recovery can take years. In some cases, people don’t recover and suffer relapses throughout their lives.
Exercise is often a problem for people with CFS because physical activity may worsen their symptoms. Medical opinion has been divided on whether CFS patients should attempt regular exercise or not – some believe that gentle exercise is helpful, while others caution against any form of aerobic activity at all. However, studies recently published in the British Medical Journal and the Medical Journal of Australia have found that patient education on CFS and a graded exercise program can improve CFS symptoms in many cases.
Helpful Information From The CDC For Family, Friends, And Physicians, Of Patients With Chronic Fatigue Syndrome.
If you have Chronic Fatigue Syndrome or FM, you may find yourself in many situations where family, friends, and even health care professionals don’t understand the complexity of your condition. I recommend you go to this TOOL-KIT FOR HEALTH CARE PROFESSIONALS and print out the information. This is information on Chronic Fatigue Syndrome that is written by doctors, for doctors, and is put out by the CDC. Not only is this information good to pass on to your “less informed” doctors, but it is also written in a way that can be understood by non-medical professionals as well; making it good for helping family and friends understand the severity of your (seemingly benign) illness.
Tip: If you would like to see this video on your full screen…..Click on the lower right corner of the video were it says YouTube……This will take you to the site, and then at the right lower corner of that video, you will see a square to click for you to get a full screen.
WHAT SHOULD YOU DO IF YOU THINK YOU HAVE CHRONIC FATIGUE SYNDROME? — by Catherine Morgan
I recently was asked this question, and this was my response.
CFS is very hard to diagnose, it is usually considered a “diagnosis of exclusion”. If you do have CFS or FM, you will have been suffering with many symptoms, and fatigue is just one of them. I would suggest you write down all of your symptoms, how severe they have been, and how long you have had them. You may or may not have CFS, but any good doctor will run certain test, and attempt to treat you based on your symptoms and conditions.
I’ve been feeling a bit more “chronic fatigued” than usual the last few days, but I still wanted to post something. I hope you like it, and have a wonderful day.
One thing I will never do is give up hope. Not just that I get well someday, although I do hope and pray for that. What I refuse to give up hope about, is that I am here for a purpose. I will never give up hope that I will one day see the blessing, and see the purpose, in what I now can only see as suffering. I believe in my heart that we are all here for a very important reason, it’s just that many of us aren’t quite sure what that reason is, and that’s o.k. We just can’t give up hope that one day we will see the light, and it will all make complete sense to us….on my dark and sad days, that is what I try to remember.
I am so tired, please see me through eyes of compassion. You may not be able to see it, but I am suffering; Chronic Fatigue Syndrome is a silent disease, that is gradually stealing my life from me.
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WHERE IN THE WORLD DID MY MEMORY GO? Could A Vitamin B12 Deficiency Be To Blame? — by Catherine Morgan
Every day it seemed my memory became worse and worse. I would forget what I was talking about in the middle of a sentence. Even if I wrote things down so I wouldn’t forget, I would just forget that I wrote anything down. I would be driving, and forget where I was going. I would ask the same questions over and over again, not remembering that I had already been given the answer. When my house was quite, I would panic thinking I didn’t know where my children were. I was afraid to talk to people, knowing I would sound stupid.
Could these symptoms be part of my chronic fatigue syndrome? If so, how much worse was it going to get? Finally, when it got so bad I could no longer read a book or even watch t.v. without forgetting it all, and my son just became so frustrated that he told me he thought I just didn’t care about anything he was saying, I knew I had to get some help. But, as usual this was easier said than done. I had been complaining to my doctors about this for quite some time, but they thought it was just normal forgetfulness and I was making too much of it. By now, it was almost two years later, and I was getting much worse, so when I went into the doctor (a Neurologist, and a new one since I had just moved), I broke down and started to cry when I told him how bad this problem was becoming. Basically “sealing the deal” that I was just an anxious, depressed, emotional women…..and all my problems must be related to my “emotional” state. However, even though this doctor told me he did not believe in CFS, he agreed to run some test to see if I was suffering from a “real” disease, that he would be able to treat me for. Consequently, I left even more upset than I did when I got there. I either had to hope they found I was suffering from, Lupus, Multiple Sclerosis, or some other brain abnormality; or hope they found nothing, and in-turn not be able to do anything to help me with this problem that had become so hard to live with.
Eating Healthy Wont Cure Your CFS, But Eating Poorly Will Make It Worse. — by Catherine Morgan
There is no cure for Chronic Fatigue Syndrome (CFS and FM), but many doctors believe that it is helpful to eat healthy. I believe this is true for several reasons; one – many people with CFS and FM are sensitive to chemicals and additives that are found in processed foods, two – refined sugars such as fructose are not good for anyone (except maybe a diabetic in insulin shock), three – good nutrition is found to benefit everyone, sick or not, it’s just better for you.
So with that said, why aren’t we all eating healthy? Well, that is simple to answer. It’s harder, it’s more work, it’s more expensive, and most of us are addicted to sweets. So what should we do then? Well, we try are best to start eating healthy, one day at a time, one healthy food at a time.
HAS THE WORLD LOST IT’S EMPATHY? — by Catherine Morgan
We all see the news, and feel badly about the wars, the starving, the homeless, the poor, and all the other sad things we are seeing on television. On a smaller scale, we all know people with hardships, going through divorce, struggling with health issues, having financial problems, and many other difficulties affecting our families and neighbors.
When we hear all these stories, we feel great sympathy and sadness. But, I think what we don’t do, is feel empathy. To feel empathy, you have to be able to put yourself in that other person’s shoes, and feel what they must be going through. True compassion comes from a place of empathy, not sympathy. In fact, most people don’t want our sympathy, and I don’t mean that in a disrespectful way. What I am saying is that people don’t want us to feel sorry for them, they want us to have compassion and empathy for them.
I recently came across a site that has “Louise Hay’s “Wisdom Cards”. Each one is beautiful and insightful. I just wanted everyone to know that I added this site to my Links, so you can click on it any time. You can find the link on the right side of this site under the category of EMPOWERMENT, and then just click on Louise Hay Wisdom Cards.
KEEPING A PERSONAL MEDICAL JOURNAL — by Catherine Morgan
Whether you are suffering from a chronic illness, pregnant, or just getting older. Keeping a personal medical journal, is important, and can really come in handy. Some may want to do this on a weekly or monthly basis, others on a daily basis, this will depend on the severity of your health issues.
This video was made specifically for the family and friends of people suffering from Chronic Fatigue Syndrome and related conditions. You can go to the SLEEPYDUST.NET web-site and use a link to send this video via Email to as many people as you would like. The more people that understand and have compassion for this disease the better.
Grieving For The Loss Of The Person You Once Knew — While Learning To Be The Person You Have Become – by Catherine Morgan
There comes a time in every fight, where you have to wonder what it is you are fighting for. In the case of chronic illness, I thought I was fighting to take my life back. I thought I was fighting to find a cure for myself. I thought I was fighting for the right combination of medications to help me lead a “normal” life again. I was fighting, fighting, fighting…..until that one day when I realized, I was fighting a losing battle. No matter how much I fought, I was never going to get my life back. No matter how much I fought, I was never going to be “normal” again. I actually even fought myself at this time, to not give-up the fight. I thought that if I admitted failure, I was letting the disease win. But the truth is, that as with most fights, the toll the fight takes on you emotionally is much worse than the fight itself.
FINDING EMPOWERMENT THROUGH ADVERSITY — by Catherine Morgan
When we are suffering it is very difficult, if not impossible, to see the “light at the end of the tunnel”. But, it is there. You will get through it. And, in time your wounds really will be healed.
Can something good come out of adversity? Often in the face of adversity, we are unable to see anything through our pain. The only thing we can think about, are questions. Why is this happening to me? How will I go on? How will I survive? These are all reasonable questions, and in the depth of your pain you will ask them, and more. But, there are no answers to these questions. Only after you realize this, will you be able to go on, and let go.
CHRONIC ILLNESS AND DEPRESSION — What came first? – by Catherine Morgan
If you found out you had Diabetes and became depressed, the doctor would tell you that it is normal to feel depressed after a diagnosis such as this. And the doctor would be correct. Chronic illness changes your life, it is scary, it is frustrating, and yes it can also be very depressing. And, there is no shame in admitting that you are depressed, there are many things your doctor can do to help you with this problem.
Just about every person that suffers from a chronic illness will also suffer in some way with depression. If you are diagnosed with Lupis, or MS, or cancer, or any other chronic medical condition, your doctor will be totally understanding when you come to him with your feelings of depression, as he should be. And treating your depression should be an important part of the overall treatment of your illness.
Although I fight it, it is never far from me, because it is me.
Living with chronic illnesses that ravage my body, and prevent me from being the person I have always wanted to be.
My former self sits in the shadow of these illnesses, weeping with the sad reality that there is no escape from them.
Suffering from debilitating diseases, that are virtually invisible to the outside world, but still hoping someone will see me…sitting here alone in my shadow.
But even if you did open your eyes and see me, it would still be impossible for you to grab onto my hand, for it’s just a shadow of who I am.
So for now, I must learn to live here, in the shadow of myself, and try to find peace.
