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.
This is a post I did for BlogHer, that I thought would be great to include here. And since I don’t have the strength to writing a post at the moment, I thought adding this would be an acceptable alternative…Hope you think so too.
Millions of women suffer from chronic illness, and many of them courageously blog on how they are living and coping with their disease. Whether you suffer with chronic illness or you know someone who does, these BlogHers have much they can share with you.
Being sick is like being on a roller coaster — you can be up and hopeful one minute and down and doubtful the next. Your illness can take unexpected and unpredictable turns. One disease can dispose you to or give rise to another. This can be frightening as well as exasperating. Finding medication that works, being committed to following a good treatment plan and maintaining honest, direct and open communication with your healthcare providers takes time, energy and skill. But this is only part of the picture. Living with illness affects every part of your life and every significant relationship you have. — living with chronic illness
In this week’s Ten Money Questions, we speak with Catherine Morgan, one of our Health & Wellness contributing editors at BlogHer. Catherine is a nurse by profession, but unable to work due to chronic medical problems. You can learn more about her journey at this BlogHer post or at Living With Chronic Fatigue Syndrome. She is also a single mother of two teenagers and began writing and blogging as a way to support herself and her children without complicating her medical condition. There are many money morsels below including my key take away: health always trumps wealth! — read full post
This is a post from the site of a women who lives with Chronic Fatigue Syndrome. I wanted to post it because it’s something we can all relate to. We have those few good days. The days we think the tide could be turning. We allow ourselves that glimmer of hope. But then like a fly-swatter, the reality of Chronic Fatigue Syndrome hits us over the head, and our hopes for wellness are squashed.
I think this post reminds us, that we are not alone. It also acknowledges that this disease has the power to bring us to our knees, but we can still choose to get back up, even if it means we will be knocked down again and again. It’s both the blessing and the curse of this hideous disease.
I will not be invisible anymore. Chronic Fatigue Syndrome has taken a lot from me, but I still have my voice, and I will be heard. With my voice I hope to help bring awareness and visibility to a disease that has been misunderstood and ignored for too long.
On May 16th and 17th the Chronic Fatigue Syndrome Advisory Committee will meet in Washington, D.C. where a dedicated group of top CFS experts and advocates – will report on the latest research findings and patient needs, and submit budget allocation recommendations to the Secretary of HHS.
I was hoping to attend this meeting and give a five minute statement to the committee, as both a patient and an advocate of this disease. Unfortunately, for a variety of reasons I will be unable to attend. However, the committee has agreed to enter my statement into the record, and for this I am very grateful.
The following is my statement…
A STATEMENT TO THE CFS ADVISORY COMMITTEE
FROM: Catherine Morgan — I am a 40 year-old patient with CFS, a mother, and a nurse (although unable to work as a nurse due to my medical problems).
Although I wish I had been able to attend this meeting in person, I am extremely grateful to have the opportunity to submit this written statement.
Being a single mother is not easy under any circumstances, but being a single mother with Chronic Fatigue Syndrome has been particularly difficult. I have been suffering with this insidious cluster of debilitating symptoms (referred to as Chronic Fatigue Syndrome), for over ten years. But it has only been more recently that I have come to accept that this condition isn’t going away. The funny thing is, even though I am caught in the middle of mourning for the person I might have been, and accepting the person I am, I’ve begun to feel hopeful. Hopeful because, by letting go of the burden of needing to be cured, I am also letting go of the idea that if I just got more sleep, or got more exercise, or took the right combination of medications, or found the right doctor, that somehow I would be better. This thought process is exactly what keeps someone with Chronic Fatigue Syndrome down. It puts a judgment on them, that they are somehow responsible and this is not true. So, letting go of this type of destructive thinking is half the battle with this disease. And I think that is why this type of awareness (that is being done here today) is so important.
I believe we can all agree on the importance of research so that a diagnostic tool can be found, and a treatment developed. However, what is equally important, but continues to be overlooked, is the acceptance by doctors that this is a “real” medical condition and not an “emotional” problem.
Are many people with Chronic Fatigue Syndrome depressed? Of course they are. Anyone suffering from a chronic debilitating medical condition, is most likely going to have some degree of sadness, anxiety, or depression associated with it. A physician wouldn’t dream of telling a patient with Lupus that depression is the cause of their disease, but surely there are many patients with Lupus that are also depressed. And by all means depression, whether associated with Chronic Fatigue Syndrome, or any other medical condition, needs to be addressed and treated. Depression is a symptom associated with this disease, not the cause of this disease. By “blaming” this disease on depression, or any other “emotional” disorder…Well, that is simply “blaming” the patient for their disease, and that couldn’t be farther from the truth.
The truth is, doctors become doctors for the same reason I became a nurse, so they can help people. And, I think doctors feel helpless when they have a patient that they can’t “fix”. Herein lies the problem. Patients can not, and should not have to WAIT to receive compassion and treatment from their doctors, until scientific research has found a way to cure them. Just as I have come to accept my condition, doctors must come to accept this condition and treat the patients and their symptoms accordingly.
There is so much a doctor can do to help a patient with Chronic Fatigue Syndrome. The most important is to accept them and their diagnosis. Don’t tell them you don’t believe in the diagnosis. What purpose does that serve, other than to degrade them? Second, do not pass judgment on the patient for their condition. Treat patients with Chronic Fatigue Syndrome the same way you would treat anyone else with a chronic medical condition, with respect and dignity. We are not just patients with Chronic Fatigue Syndrome, we are human beings. Third, work together with the patient to address the specific symptoms of their disease. It doesn’t matter what you call this disease, a physician CAN treat the patient and their symptoms regardless of what the name of the disease is. A physician CAN treat the patient and their symptoms regardless of whether research has found a cause or cure for the disease.
These are simple things, that could be implemented right now. Today is what matters to us. Today is all any of us have. Help us get through today, then tomorrow, and then help us take one day at a time towards being as well as we can be, given our disease. If you can do that, you will be making a huge difference in our lives… Anything less, is tantamount to “doing harm”. So please – Do No Harm – that is all I ask.
Thank you.
Catherine Morgan
Livingwithcfs.wordpress.com
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If you would like to know more about Chronic Fatigue Syndrome, please see the following YouTube video.
The video aims to help the friends and family of ME/CFS (including Myalgic Encephalomyelitis (M.E.), Chronic Fatigue Syndrome (CFS), and Post Viral Fatigue Syndrome) sufferers understand the illness and what their loved ones are going through. To view a clearer, larger version of the video, visit: http://www.sleepydust.net
I may walk alone, but my voice will not be broken. Below is a song by Jewel that empowers me, and reminds the world…that only kindness matters. I hope you will listen to it, and find the meaning and truth that I see in these words.
In order to recognize the debilitating effects of Chronic Fatigue Syndrome (CFS) and call attention to the millions of families affected by the disease, May 12th – May 19th has been designated National Chronic Fatigue Syndrome Awareness Month. . . . . . . .
The National Institute of Health reports CFS affects millions of individuals around the world with the largest single population of unmet medical need in the U.S. One out of every 300 Americans suffer from CFS, but currently there are no medications approved by the Food and Drug Administration for treating CFS.
Full recovery is estimated at only 5-percent to 10-percent of all patients and CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, congestive heart failure and similar chronic conditions. The estimated economic impact is $17-billion in lost income and an additional $7-billion in healthcare costs. . . . . . .read full article
This is my first personal post about being sick. A “coming-out”, to some of my online friends. And a whole lot of elaboration, for those who know I’m sick, but don’t know the details. It’s taken me ages to write, and I haven’t re-drafted it: here are my musings, in the raw.
More than 4,000 published studies show that patients with CFS have underlying biological abnormalities, many of them centering on brain hormones and the autonomic nervous system, Dr. Komaroff said. In terms of clinical application, he identified three research areas as the most promising or cutting-edge:
Evidence that the immune system is chronically activated, and that pro-inflammatory cytokine production is increased. “This has therapeutic implications because there are a number of biologic pharmaceuticals that counter the activation of the immune system and the effect of the production of pro-inflammatory cytokines,” he said.
Evidence that there is something wrong with energy metabolism and the oxidative electron transport chain in mitochondria.
Evidence that CFS develops following several different kinds of infections, and that people with genetic vulnerability are most likely to get CFS when infected with certain kinds of infectious agents.
Genetics is an especially promising frontier in CFS research, Dr. Vernon said, pointing to 14 papers published in the April 2006 issue of the journal Pharmacogenomics which discussed findings from a CDC study in Wichita, Kan. from 1997-2001. Among other findings, researchers found that CFS is linked to five mutations in three genes that relate to the body’s ability to handle stressors. Research from the CDC and other investigators also has shown gene activation patterns that reflect a chronically activated immune system and aberrant energy metabolism. — read full article from American College of Physicians
On May 11, the CFIDS Association will launch its 4th Annual Virtual Lobby Day, strengthening the calls to action made by 85 well-trained advocates taking part in the “live” Lobby Day event in Washington, D.C., on May 15. These virtual activities will also bolster other education events occurring in conjunction with International CFIDS/CFS/ME Awareness Day, recognized on May 12.
This video aims to help the friends and family of ME/CFS (including Myalgic Encephalomyelitis (M.E.), Chronic Fatigue Syndrome (CFS), and Post Viral Fatigue Syndrome) sufferers understand the illness and what their loved ones are going through.
May Is Chronic Fatigue Syndrome AWARENESS MONTH…I Guess Nobody Mentioned This To My Doctor. — by Catherine Morgan
Don’t get me wrong, I really like my doctor. He takes a lot of time with his patients, he is kind, and he really does just want to see his patients get well. But, he doesn’t believe in the Chronic Fatigue Syndrome diagnosis. So why is he my doctor? I continue to go to him because I really do believe he is a good doctor…and having a good doctor is more important than a doctor just placating me about CFS. I like to think he is just a bit naive when it comes to Chronic Fatigue Syndrome…and I do hold out hope that with my help he may become both aware and excepting of this (my) condition.
Anyway, I just had to come home and post about what my doctor said to me today.
He said, “Have you been exercising?“… Me said, “No, my asthma has been very bad the last few months…and even so…with my CFS exercise is almost impossible because it makes my symptoms so much worse.“… He said, “It’s a fact that exercise helps the symptoms of Chronic Fatigue.” He explained that I should start walking around the block, and then continue to walk a little more each day. This is when my cartoon bubble said, “and if I do that the CFS angels will sprinkle fairy dust on me and I will be cured. Why didn’t I think of that? Oh, I did…IT DOESN’T WORK…IT MAKES IT WORSE!” My cartoon bubble digresses. I didn’t argue with him about it, I figured it wasn’t worth the trouble, after all I do like him as my doctor.
Hi everyone, my name is Catherine, and I am going to be one of your contributing editors for Health and Wellness here at BlogHer. This is my first post as a contributing editor, so I thought I would take this time to tell you a bit about myself, and how I got here.
