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.
Redefining Yourself From Healthy and Successful to Successfully Living with a Chronic Illness — by Catherine Morgan
This issue is so important, and that is because; When you suffer from chronic illness, although you are being treated (even successfully), going back to your former life before you were sick may be impossible. I hear this all the time from others suffering with CFS and FM, and I am certain it holds true for many others suffering with chronic disease as well. The biggest problem, is that many of us “define” ourselves through our work, or what we do for a living. Quite frankly, this is a bad idea even if you are a healthy person. None of us “are” our work. Our work is not who we are, it’s simply what we do. But, we all know it doesn’t always feel that way, especially when out of nowhere, we are unable to do what we do.
COPING WITH LONELINESS WHEN YOU HAVE CFS – by Catherine Morgan
Since I began working on this Chronic Fatigue web-site I have read many other bloggers with CFS, and viewed many video-accounts of people suffering with CFS. One thing stands out to me, and that is the feeling of loneliness that most all of these people are feeling. Some physically alone, others emotionally alone, many both.
I wanted to take some time and address this issue, because it seems so important. The first thing I always want to say is “You are not alone”. Those words sound nice, and I believe them 100%, but the words don’t make it so.
The two major reasons people with CFS feel alone are: 1) physically not being able to get out and be around people due to symptoms of this condition, and 2) feeling like no one in their life understands what they are going through. Sometimes I think the latter is the harder one to overcome. I wish I could call this post “How To Not Feel Alone When You Have CFS”. Unfortunately, there is no easy way to help this problem of loneliness. So instead, this post will be about; Awareness. Since awareness is always the first step to solving any problem, that is where I will start in addressing this problem…..This will be the first of many posts I will do on this issue.
I put this picture up to let you know that I am working on a post about how chronic illness such as CFS and FM, can make a person feel all alone. If you have any thoughts on the subject I would love to include them in the post….just put them in the comment section on this post for now. Thanks.
Until then, here are some of the posts I have written about my personal experiences with CFS (just click on the title and it will take you to the post):
THE FOLLOWING INFORMATION IS TAKEN DIRECTLY FROM A SITE CALLED WOMEN’S HEALTH MATTERS. This is a brief but complete summary of the symptoms facing people with Chronic Fatigue Syndrome.
Just like people with Diabetes use a monitor to check their blood sugar levels, it can be helpful for people with CFS to monitor their blood pressure. I recommend that if you suffer from CFS and also have symptoms of dizziness, then monitoring your Blood Pressure on a daily basis should become part of your routine. This is because, like many of the symptoms associated with Chronic Fatigue Syndrome……you may have good days and bad days. So, being able to pinpoint a corresponding blood pressure to a specific symptom (ie: dizziness), can be important information for both you and your doctor.
DON’T BE FOOLED BY PRODUCTS CLAIMING TO CURE CHRONIC FATIGUE SYNDROME. — by Catherine Morgan
The only thing that demeans patients suffering from Chronic Fatigue Syndrome more than the name, is products and people claiming to have a “cure” (if you buy their pill). There is NO CURE (at this time) for Chronic Fatigue Syndrome. If you are truly suffering from this disease, and not just every-day fatigue; the most important thing for you to do, is to work closely with a medical practitioner and use both traditional medicine and (when indicated) alternative modalities, in order to best treat your symptoms. The NUMBER ONE thing you should NOT DO, is click on an ad that claims to have a pill to cure this (non-curable) disease. The people that are making these claims have only one thing in mind…..to make money off of your suffering. There is NO SUBSTITUTE for genuine medical treatment, do not be fooled by these deceptive practices.
Below is an example of two types of ads for “natural remedies”. The first is using DECEPTIVE ADVERTISING to trick you into buying a product that will NOT do what it claims. The second is using NON-DECEPTIVE ADVERTISING to give you information about their products and to encourage you to seek medical attention before using any of them.
With no cure for Chronic Fatigue Syndrome or Fibromyagia, Stem Cell Research could be the answer.
This is a one minute video that demonstrates what is currently happening to unused frozen embryos from fertility clinics. The senate will be voting this week to either support Stem Cell Research, or to put more restrictions on it. Please go to my political site “INFORMED VOTERS” to see more information, and to send an Email to the Senate asking them to support Stem Cell Research.
I came across this video last night, and it really touched me. I added it to my INFORMATIVE VIDEOS, but I also wanted to make a post around it. It addresses the problems facing someone with Chronic Fatigue Syndrome and Fibromyalgia, to the song “It’s Not Easy“. I also think that this would be a great video for someone with CFS to pass on, to friends or family that don’t understand the gravity of their disease.
Video Made By Someone Suffering From Fibromyalgia and Chronic Fatigue Syndrome:
Are You Happy With Your Doctor? — by Catherine Morgan
As patients, we all know that we are not always treated with the respect and dignity that we deserve (especially when you suffer from Chronic Fatigue Syndrome or Fibermagia). There is a site called RateMDs.com, and I recommend that EVERYONE (whether you are sick or not) go to this site and rate both your good and your bad doctors. It is very easy to do, and it is the only way that doctors will begin to realize that they can’t just treat us as numbers and dollars, we are human beings, and they work for us. And if they do a bad job, we are going to tell. It is also a good place to check and see if a doctor you are considering going to has a good rating or not.
I can not recommend this activity enough, the internet is a great tool for consumers, and a great way for patients to take their power back. So, go to RateMDs.comand give your good doctors the credit they deserve…..and “tattle” on all those bad doctors who have mistreated and been disrespectful to you. And then pass this information on to your friends and family.
A Name Change For Chronic Fatigue Syndrome — Will It Ever Happen? — by Catherine Morgan
According to published research, CFS patients and researchers alike feel that the present name trivializes the serious nature of the disease by labeling it “fatigue” – a symptom that is shared by almost everyone at some point in their life. — read full article
As a person diagnosed with CFS, the name has been devastating in almost as many ways as the disease itself has. Not only do most regular people think it is a name for someone who is no different than they are (as “everyone” has fatigue), but my experience has been that most doctors do not even except CFS as a “real” diagnosis. Hence, the need for a more respectable and acceptable name for this devastating disease.
I found a site today at The CFIDS Association of America, that enables anyone to make a fund raising page for Chronic Fatigue Syndrome. So, I went ahead and made one. If you would like to see it or donate, click here.
JUST A LITTLE SOMETHING I CAME ACROSS TODAY. I GUESS A LITTLE GIGGLE NEVER HURT, AND IF WE CAN’T LAUGH AT OURSELVES, WHO CAN WE LAUGH AT? Hope you get a little giggle too. ON A LIGHTER NOTE
I think that the greatest boon to diagnosis in modem medicine would be a machine that could let the doctor feel exactly what the patient feels. This is one of my favourite fantasies. This machine would transfer the patient’s feeling directly to the physician. It would make him/her feel exactly as the patient feels for a set period of time.
You know when you have CFS/ME when…
Everything hurts and what doesn’t hurt, doesn’t work
You actually look forward to a dull evening.
You sit in a rocking chair and you can’t get it going
You feel like the morning after the night before, and you haven’t been anywhere.
Dialling long distance tires you out.
You are found curled up asleep, halfway up the stairs.
You remember today that yesterday was your wedding anniversary/birthday.
Your little black book contains only names ending in MD
The best part of your day is over when your alarm clock goes off.
You get winded playing chess.
You bum the midnight oil until after 9.00pm.
You join a health club and don’t go.
Your back goes out more than you do.
Your mind makes contracts your body cannot meet.
Acknowledgment: Reprinted from Me and You, Summer meet. 1996, magazine of the CFS/ME Society of NSW Inc.
I came across this article today, and I wanted to share it. I think the reason this article is so important, is because it shows the importance of both awareness and treatment of CFS. Even though (at this time) there is no cure for Chronic Fatigue Syndrome, treating the symptoms (which can be different in both type and severity) can go a long way in helping sufferers be as healthy as they can be, while living with this debilitating disease. What I mean is; If on a scale of one to ten….”one” being, no treatment and a patient feeling all the effects of this disease….and “ten” being, treatment of symptoms and a patient feeling the best they can feel, given their condition….We need to strive to get patients to as close to “their” ten as they can be. Then “living” with this disease can go from being impossible to tolerable, I think this is what doctors and patients need to really focus on at this point.
All chronic medical conditions are worse if they are left untreated, if a patient can feel even a little better by having their symptoms treated, living with these conditions can become somewhat or even much more tolerable. Until there is a cure for CFS and FM (and I hope someday there will be), awareness and treatment is the best we can do.
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