Living, Coping, and Blogging with Chronic Illness
Posted by Catherine Morgan on May 30, 2007
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.
BlogHers – Living, Coping, and Blogging with Chronic Illness
By Catherine Morgan, 1:26 am, Sat 19 May 2007
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
So let me introduce you to some of our courageous BlogHers…
Vicki has Multiple Sclerosis…
I became a single mother when my two boys were 1 and 3. Now they’re in their 30’s. For years I was in Marketing with the travel and hospitality industry. I have a bachelor of journalism from UT and a master’s in marketing management from UTD. I’ve been disabled with MS for about 15 years. I love blogging. — Down The MS Path
Alix was diagnosed with Lupus…
A lifetime of athletics failed to keep me healthy. At 30, I became disabled. I was diagnosed with lupus after meeting 7 of 11 diagnostic criteria. — more
A Thirty-something who is Living with Migrains
My migraines tend to be hormonal and related to my cycles, although changes in pressure (weather) and stress are also big triggers for me. I’ve found that staying very well-hydrated and getting regular (and enough) sleep help a great deal, as does eating regularly. I suspect that too much sugar and too much caffeine are also triggers for me.
This is my migraine blog. I hope you’ll find it interesting and helpful. In addition to my own thoughts, I’ll post links to articles I find that are relevant to the study and management of migraines. — read more
Kerri writes about how Diabetes may not define her, but it helps to explain her…
I have been living with type 1 diabetes since September 11, 1986 – over 20 years. I write this blog because I felt alone with diabetes, and blogging helped to make the burden a bit lighter. That means more than comments or stat counts or emails. Just knowing people are out there, living a life with diabetes that is so like my own, makes a world of difference. — six until me
Catherine has Celiac Disease and she is blogging on Tips and Tricks on Living Gluten Free…
While most foods marketed as “whole grain” include a gluten-containing grain, there are a few whole grains that are delicious and safe for the Celiac diet. Quinoa (pronounced “keen-wa”) is one of my post-celiac discoveries. It is an ancient South American grain that also happens to be a great source of plant protein. It is available at Whole Foods, Trader Joe’s, and other well-stocked supermarkets. — see recipes
Joan and Rosalind both suffer with chronic illness, and they write a blog that helps and encourages women to continue working – Keep Working Girlfriend…
For the past 30 years, I’ve lived with chronic illness: the daily questions, the self doubt, the pain, the fatigue, and the fear. I know, from experience, how tough it can be to get out of bed each day and get a job done, whether you work for yourself or someone else, whether you make just enough to get by or your salary is fat, whether it takes a one hour commute or you never have to leave home. And I know, from experience, that it can be hard to keep working, especially if you’re a woman, if you live with a chronic illness. The work world, a tough place for women who are “healthy” can feel impossible when you’re managing an illness, too.
May is Chronic Fatigue Syndrome Awareness Month, and on my blog Living With Chronic Fatigue Syndrome I posted on a statement that I gave to the Chronic Fatigue Syndrome Advisory Committee that met on May 16th and 17th.
Take a few moments and view a video that aims to help the friends and family of Chronic Fatigue Syndrome (CFS) sufferers understand the illness and what their loved ones are going through. From sleepydust.net
Also see: It’s Not Easy…To Be…Me
Since May is the month for bringing more awareness to Chronic Fatigue Syndrome, here are some other BlogHers blogging on this invisible disease.
Sandy has a blog called Fighting Fatigue. She suffers with Chronic Fatigues Syndrome, Fibromyalgia, and Interstitial Cystitis…
My personal journey with chronic illness has been a difficult one, but a journey that has taught me a great deal about life, understanding and compassion.
I am here to let you know that if you suffer from Chronic Fatigue Syndrome, Fibromyalgia and/or Interstitial Cystitis, you are not alone! There are many of us who are where you are and have felt what you are feeling.
According to some medical journal articles, 24.6% of I.C. patients show symptoms of Fibromyalgia, compared to 3.2% of the general population. The theory is that “I.C. might be a disease within the spectrum of chronic fatigue and pain syndromes”. — read more
Ellie says on her blog Life ,Not Just Existence…
It’s frustrating when a chronic illness interupts your life (in my case Chronic Fatigue Syndrome), but everyone loves a challenge and at the moment mine is to keep enjoying a fulfilling life, not just existing.
Vicki is learning to live with Chronic Fatigue Syndrome at Manchester M.E.
I’ve been sitting around waiting to be well enough to work and that hasn’t happened, so instead i’m being pro-active, I’m going to try and find a job that works around me instead of it being the other way around. — read more
Well these are just some of the many bloggers that are blogging on their personal struggles with chronic illness. If you are a BlogHer who is also blogging on your trials and triumphs with chronic illness…I hope you will leave a comment and a link to your site, and tell us how blogging is helping you cope with your disease.
One more thing…I just found out that it was also National Women’s Health Week this week. I did a quick post on it at Women 4 Hope.
kathyak said
http://kathy-mcspage.blogspot.com/2007/03/chronic-fatigue-syndrome-thief-of-many.html
May 12th – Chronic Fatigue Syndrome Awareness Day
The Thief of Many Lives — The Reality of living with Chronic Fatigue Syndrome
Until you read “The Thief of Many Lives” you too may have questioned the validity of Chronic Fatigue Syndrome as a real illness. It is VERY real, especially for us the sufferers and our caregivers. The credibility and validity of this disease has long been a most difficult message to convey to our Government, Physicians, Healthcare Professionals, friends, families and general public.
What makes this even more challenging than how we might physically appear is the inappropriate name given to such a serious and debilitating disease. Consequently, one of the worse things someone can say to a person with CFS is how well we look on a particular day … we must be feeling “better” … “better” than what? Death? Unfortunately, CFS victims generally do not feel better than death … warmed over or otherwise!
Lengths of time go by, month, seasons, and then years when all of our reserve energy is used simply to eat and breathe and those are the “good” days. Unfortunately, not many see this as most people with CFS are left to suffer behind closed doors. Unexplainably, our cries for awareness, and validity continue to fall upon deaf ears. WAKE UP AMERICA !
CFS is at epidemic proportions destroying lives and affecting millions of people worldwide.
May 12th is International CFS Awareness Day. Please make your voice be heard. Inform others about the tragic impact this illness is having on you, your loved one and our nation.
BE AWARE OR BEWARE … As you could be writing this letter from your bed next May 12th.
———————————————————————————————
The Thief of Many Lives
© Kathleen Houghton — Alaska CFS-MCS Association
I am constantly on the prowl in search of new victims. I do not discriminate—health care workers, teachers, students, airline personnel, teens, moms, dads, and innocent children are my prey. If you are dynamic and have a lust for life, I will seek you out, and I will find you.
Just when you are at the peak of your endeavors, climbing that career ladder or building your family and home, I will find you. There is nothing that you have in your life today that I am not capable of destroying tomorrow, your career, your education, your goals, your dreams, your family, and your life. I will have it all. I will strip you of your ability to function at any level above minimal, and from this day on you will refer to that minimal as a “good day.”
I have the ability to create an invalid out of you overnight, and I will. It will take a marathon effort for you just to get out of bed. At a cellular level your immune system will be in a constant war battling itself and unnamed viruses, which will painfully be replicating in your brain. I promise you, I will bring you despair along with pain, isolation and losses far beyond what you can ever imagine. Your mind will be in a constant “fogged” state, your expression will be unable to express, and your eyes will have a noticeable “glazed over/drugged out” look.
You will find it most difficult to pay attention, concentrate, or even process the simplest of thoughts. Making change from a dollar may well be beyond your ability now. Your mouth may feel like it is full of marbles when you try to speak, as your tongue twists and nothing you try to say comes out right. Who would believe your level of education when you can’t even string enough words together to make a complete sentence … or one that makes any sense for that matter.
I promise, I will bring you at any unsuspecting time, severe abdominal pain, nausea, vomiting and diarrhea along with a host of gastro-intestinal disorders. I will make you weak and lifeless as one could be without being confirmed dead. You will be housebound or in bed for several years if not the rest of your life. As part of incapacitating you, I will make your heart race and your head pound; your throat will constantly be sore and your lymph glands will swell. That will all seem trivial after I inflame and spasm muscles throughout your body. Crushing a grape between your fingers may take too much energy or be too painful now.
On those nights that I allow you to sleep, you will awaken drenched with sweat or throbbing with pain. Perhaps I might even throw in a little seizure activity. On those nights that I do not allow sleep to occur; I will torture you with thoughts of death…. Not suicide, but death. Simply because you have not come to realize that this is your new life, and that you are not living. You will need to re-create your being every day, as every day I will bring you unpredicted symptoms and suffering.
I have also done a few things that you may not be aware of yet. I placed some lesions on your brain, have you noticed how you have difficulty with balance and memory yet? I have permanently altered your immune system. I have shorted out your nervous system so that you have intermittent numbness and tingling, which might resemble an electrical current zapping you from time to time. This is called neuropathy. Nope, it’s not curable either!
Now I have you. I have taken over your body and mind. I have stolen your life but left you alive, not very functional, but by clinical definition you are still alive.
Your family will not be able to give you all the constant care that you need on a daily basis. As for your friends, well, they’re still on that ladder climbing up. Rest assured, I am looking for them too. By now, chances are good that most of your family and friends have abandoned you, so you must have learned the definition of isolation. This newfound isolation will save you from having to explain how sick you really are to others, they won’t understand anyway. Isolation will save you all that energy.
Your health insurance has already been or will shortly be discontinued as you lost your job from not being able to “keep up.” Perhaps you got caught dozing off or called in sick one too many times. Now that you are no longer employable or insurable, when you seek medical care, any medical professional that figures me out will diagnose you and say that what you have is presently not curable.
Now it is time for you to seek out medical care, nation if not worldwide. However, most so called medical professionals will not even have the ability to recognize me when they see me, as they have not learned about me in medical school. So, chances are good that you will be misdiagnosed. You will give more blood samples and have more examinations than you ever imagined existed. Then you can take the results to dozens of doctors in search of a diagnosis. One that is valid as well as socially and medically acceptable. One that does not label you as depressed or say that “it is all in your head!!!” Most doctors will suggest a vacation, weight loss diet, new or increased love life, help with the children, or change of scenery as the “cure,” mainly because you may look like the picture of health. This is my mask of deception.
You will pray for a positive word from current research. Research, which you will soon learn, is quite limited due to lack of funding and government support. You will learn new vocabulary which contains words like: T-Cells, Cytokines, Nuclear Antigens, Natural Killer Cells, Immunoglobulins, Cytomegalovirus, Seratonin, Cerebral lesions, and Immune Dysfunction are among a few. However the most important words that you will need to know and fight for are Social Security Disability and Medicare.
At one point I may give you a false sense of recovery or remission. Let me assure you, I will be back, as you are my prisoner and that makes me your keeper. I have placed the lives of millions of people nationwide in limbo, I continue to do the same world wide. I would consider this an epidemic, wouldn’t you?
Eventually I will bring the government, health care workers, and society to its knees in search of unraveling my complexities, which are crippling humanity. I leave it up to you, my victims, and your caretakers, to educate the public and let them know that I am very real and that you are very sick. Unfortunately, I have been given a totally ridiculous name, which will make your job even more difficult. Until that name is changed, I am…
CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME
Kathleen Houghton, age 52, author of The Thief of Many Lives was a professional healthcare worker dedicating many years to Pediatric Special Care nursing before CFS put her life on hold at the age of 36. She continues to be ill and is mostly housebound with Multiple Chemical Sensitivity (MCS) as well as CFS. When able, she promotes CFS and MCS Awareness through accurate community information and education.
dancingdragon said
While I’ve almost totally had to cut out phone calls and e-mail, blogging is a little easier energy-wise.
I have a blog where I compile useful information for myself (and hopefully others too):
http://chronicfatiguesyndrome-cfs.blogspot.com/
And my personal blog, which has only recently become about living with CFS. You can read about life before and after:
http://waltz.blogspot.com/
fightingfatigue said
Thank you so much for listing my Fighting Fatigue website in your list! I feel honored!
tomcollins said
I’m 20 and I’ve had FM for almost 3 years. I was a technical theater major, I spent the freshman year college in the shop everyday, working long hours and became more and more fatigued. I was finally diagnosed with FM the beginning of my sophomore year. Then a wave of new symptoms left me unable to attend school. I have had to re-evaluate what I was going to do for a living, if I could not depend on my body. I took a year off, to try to have a better understanding of what I was truly capable of. I’m now trying to get my degree through DePaul University’s Chronic Illness program. The plan is to get my BFA in arts with a focus in theater production. The long term plan is to hang on to every good day, good moment, and make the best of life. I want to eventually get my masters in art therapy. I wish you the best and check out my blog if you get a chance.
http://tomcollins.wordpress.com
Catherine Morgan said
Hi “tomcollins” — I wanted to let you know that I checked out your site and then I saw your video. I decided to write a post using your video…hope that’s ok? I will leave a link on your blog.
Thank you for your comment.
40th anniversary invitation said
LOOKING BACK BY BELINDA HARRIS
n “Boy Scout Troop 17 at St. John’s Episcopal Church is celebrating its 40th anniversary with a 66-mile hike around
Natalie said
My name is Natalie Freeman I live in Australia and I was diagnosed with Chronic Fatigue Syndrome when i was 12 I am now 18 and i’m still trying to live with my illness. CFS as taken alot out of me I had to quit dancing after 5 yrs when I was diagnosed, it almost tore my family apart as my dad did not belive i was “sick” I lost alot of friends due to many absences. I find it very hard to open up about my illness with my friends. For a long time my illness took over me, I wasnt living I merely existed. I love reading your blogs they give me alot of hope as I worry about the future alot and my bodys limitations. I want to go to University next year to study Bachelor of Arts where i hope to major in journalism.
Catherine Morgan said
Hi Natalie. If you are not already writing your own blog, I would suggest you begin. Writing about your struggles with CFS, Family, School, etc….is very cathartic. Writing about your struggles brings them to the surface, and helps you work through them. You will also find much support from other bloggers. And if you are considering journalism studies…then blogging is a great writing exercise…the more your write, the better you become.
Thanks for your comment. Best of luck to you.
Gracie said
I think blogging is a great idea for people with chronic fatigue syndrome or any chronic illness.
We need to be able to get it out and vent because our families and friends are tired of hearing about all the possible reasons for such and such that we suffer with each and every day.
It gets to the point that they think, we don’t care about their problems because ours have become such a big issue in our life.
So this way, we don’t tell them everything all the time. We can share on a blogging site.
So cool!!
Gentle hugs
Gracie
lisa said
How do you live with Chronic Fitigue????? no one understands and Im giving up
lisa said
is it really worth getting out of bed everyday, to wake up to this???????
Smoothzie AKA The Petticoat Polymath said
I have a blog about my life with Chronic Fatigue/Fibromyalgia.
I love what Gracie said above!
Very few people I know personally, know about my blog…none of my family do. It is my own little world where I can say what I want, when I want. Some of the things are educational in nature and I want to pass them along, others are just venting…it depends on my day.
Currently, I am writing up a piece living with a chronic illness. Hopefully, it will be posted in a day or two.
Smoothzie AKA The Petticoat Polymath (Jane-of-all-Trades)
How to Get Six Pack Fast said
Not that I’m impressed a lot, but this is more than I expected when I found a link on Delicious telling that the info is awesome. Thanks.