When it’s Not So Hot, Pink and Sparkly
Sometimes I think having chronic fatigue is something like having a drinking problem. When I partake in a social life, I live it up large, but soon I have to sneak away to find a place to sleep it off. As I rest in my own little world, hearing the voices and sounds of others carrying on, I feel illicit and sadly set apart. But if I don’t regularly nip at the nap, if I go too long and do too much I find myself staggering, my words start to slur, and my brain can no longer add two and two together. I get hangovers too. For every few hours I spend out, I need to match those hours recovering at home.
I recently posted about how a pink sparkly FloydFest wristband could take me almost anywhere on the festival site. I spent four hours on the opening day of FloydFest (our town’s four day world music festival) with my son and his fiddle playing girlfriend. I listened to her play with The Barrel House Mamas, had dinner and a beer with them in the hospitality tent, and talked with friends I ran into. In the middle of Sam Bush’s first set, I headed for home, knowing how prone I am to sensory overload.
Judging by the way I felt the next day, there was no question that I would not be going back up to the festival, just six miles from my house on the Blue Ridge Parkway, especially since I knew I had to conserve my energy for a full day at the site on Saturday. Not only was I going to miss Friday’s FloydFest, I had cancel my trip to Blacksburg to attend the Free Press Open House, marking the close of twenty-four years of publication in the name of peace and justice. As I dragged myself around the house, waiting for my body to catch up with the rest of me, I kept noticing my sparkly pink wristband and found myself thinking, ‘there are places even a sparkly pink wrist band can’t take you.’ With a four day pass, earned by performing poetry with the FloydFest Poetree Players (on Saturday) and the publication of my essay in the program, I’d be lucky if I could attend one full day and a half.
Yesterday I came across a succinct definition of Chronic Fatigue Syndrome posted on an Environmental Illness Resource site. It was based on a 2006 study, the largest study to date on CFS, which determined a biological basis for CFS. I felt emotional as I read it, not only because I’ve been personally managing CFS for thirty years now, but because I knew that it would bring new understanding to CFS.
A common perception about CFS is that it’s associated with being bedridden, which is not always the case. Personally, I’ve never been bedridden, but I do know the bed better than most. Beyond the early acute stages of the disorder, which can be quite dramatic, people with CFS can appear completely normal. But here’s the catch: If everyone were given a daily deck of 52 cards of energy to spend, I would only ever get 30 (and that’s on a good day). I have to plan carefully how to spend them and stay away from situations that drain me.
Although the new findings on CFS weren’t surprising to me and didn’t offer anything new in the way of treatment, knowing they would help educate the public and the medical profession about CFS gave me a bittersweet sense of relief. Here’s the flyer I’d like to stand on a street corner and pass out:
At the press briefing, Dr. Reeves, the lead CFS researcher at the CDC, stated “For the first time ever, we have documented that people with CFS have certain genes that are related to those parts of brain activity that mediate the stress response. And that they have different gene activity levels…that are related to their body’s ability to adapt to challenges and stresses that occur throughout life, such as infections, injury, trauma or various adverse events.”
What this means is that people with chronic fatigue syndrome generally have a lower tolerance to these various stressors. The result of this is that in people predisposed to CFS, their bodies can become overwhelmed by events that other people would be able to shrug off, and this is where dysfunction in various body systems such as the nervous, endocrine and immune systems sets in.
The researchers at the CDC went on to say that they identified a number of different subgroups within the patients tested, verifying what many had suspected, that CFS isn’t a single easily identifiable disease with a single cause and diagnostic marker, but rather the result of a complex disease process. They also stated that this research proves once and for all that CFS is a very real biological disease and hope that it will lead to better diagnosis and treatment in the near future.
Do you know anyone with CFS? Read more HERE.
August 14th, 2007 9:44 am
I wish I were close enough to give you a big hug, Colleen. You must be very good at managing your energy to get as much done as you do, and I am so impressed. You seem like someone who goes for the gusto, managing to keep smiling all the while. Hang in there, friend.
~~~ Bonnie
August 14th, 2007 9:50 am
Thanks, Bonnie. Your kind thoughts and words mean a lot to me.
August 14th, 2007 5:59 pm
It always amazes me how we, with chronic illnesses, can manage to live with them. I agree that it seems like you get a lot done…you must be an expert on reserving your energy.
August 15th, 2007 1:17 am
Colleen, my neighbor’s son has it. He can’t work, and has to spend most of his days in his apt. I feel for you both, although you seem to be more high-functioning than he does. Maybe that’s his choice.
August 15th, 2007 5:06 am
I keep forgetting that you have CFS Colleen, because you seem to do soooo much and I feel a kind of boubdless energy in your writing—false though that may be, you give this off…I would think that many people don’t even “get” that you have suffered with this for the past thirty years….You obviously have found the way to balance things so that you don’t get too exhausted…But I can also see how the FloydFest would be a very tiring experience given the energy one needed to expend to participate all day and into the evenong…!
I think you handle your CFS amazingly well, my dear.
August 15th, 2007 8:49 am
Michelle Akers played a key role in winning the U.S. Women’s World Cup in soccer with Chronic Fatigue. You can do the things you love more than those you have no energy for, but if you over-do them you pay a price. Here’s a clip of her story. I know she wrote a book about her CFS experience, but I wonder how she’s doing today. http://vitanovis.followers.net/Features.Michelle_Akers
Also, the author of “Seabiscuit,” Laura Hillenbrand wrote it from bed because of CFS. She was bedriddern, but later gained some control and was involved in cognitive behavioral therapy as one treatment.
She has said, “It’s such an individual journey. But what I would say is, no matter what happens with this illness, I think it is possible to carve out a dignified and productive life.” http://www.beliefnet.com/story/80/story_8043_1.html
August 15th, 2007 9:12 am
I had to make a picture of my sparkly band to keep. I was so happy to get that color because I had a tied dye pink sequined thank on that Friday and I matched.
I’ve often wondered if I have that syndrome and it isn’t just my low blood pressure. I just can’t go like others and my whole body hurts and my mind is so heavy when I do. I do go alot and seem to have lots of energy to others but I have to take cat naps and get 8 to 9 hours sleep a night to do it. It seems like some evenings I can’t even get out of my chair and go and I wonder why doesn’t anybody else seem to feel like me. I just wondered with mom’s fibromylgia could I have a gene that would lead to this. No matter how fit or how well I eat I wear down to the point of exhausted pain, body and mind.
August 15th, 2007 9:17 am
I forgot to tell you that the very day I read the goose bumps and couldn’t remember how I had gotten any lately I was sitting in the dark watching TV that night and the commercial came on for the latest “Friday the 13th”…most of us 80s kids know that music in one beat as much as we know the Jaws theme or the Brady Bunch song….but anyway as soon as I heard that music I had chill bumps run all over me! I couldn’t believe it and I thought…”Oh I’ll have to tell Colleen that fear puts them on me!”
August 15th, 2007 9:24 am
I know what you mean, Deana about the sparkly pink bracelet. When I saw it I oooohed and ahhhhed.
Low blood pressure is one of the symptoms that some people with CFS get (which I thankfully don’t). You may have the gene for it, but it usually then takes an incident (virus, injury, environmental toxic exposure) to push someone over into the CFS category. It usually begins pretty dramatic, in a way that you wouldn’t be able to hold a full time job, and I think if you had it you wouldn’t question whether you did or not, but maybe there are all kinds of degrees. But if you have mitral valve prolapse, which I think you mentioned before, it can also come with fatigue and other CFS-like problems.
I think goosebumps are mostly associated with fear, but I don’t seem to get them for that as much as I do for when something touches me emotionally.
August 15th, 2007 9:27 am
You do manage it well. Or so it seems from what you write. {{{Hugs!}}}
My question in reading this is: Does it make you feel better, validated, that they have found these genes don’t operate the same as others?
I also wonder if the rest of us are supposed to go around and around and can’t get off the wheel to do anything that we really want to do. Maybe the blessing is that you get to pick the things that you truly love and value to do. Just a thought…
August 15th, 2007 9:41 am
Oh, yes, I welcome the research that backs up what I knew, that a sort of thermostat that controls things (in the nervous, endocrine, and immune systems) has broke in me. Mostly, I’m glad for other people to understand that it absolutely is not in my mind, that it may not be true that if I would just do this or that I would feel better, that I’m not lazy, and not aloof when I bow out of something. When I first got it, it had no name at all!
The trick has been not to identify myself with it. It’s not me, just something I deal with. It has taught me a lot and guaranteed that I would have time alone, but I also feel sad at all the life that has felt wasted because of it. Lately, I tell my girlfriends who are getting older and can’t do things back to back anymore that they’re catching up to me.
Years ago I heard someone say on the radio while discussing some illness: get a chronic illness and learn to take care of yourself and you’ll live longer than everybody. There is some truth to that. I can’t afford to eat wrong or abuse myself in the least. And even when I’m out, CFS is still evident to me, but like anyone with pain or discomfort, it can range on a scale from 3-10 and one learns to tune out the lower levels.
August 15th, 2007 6:02 pm
I’ll never forget the episode of GOLDEN GIRLS where Dorothy finds out she has CFS. It was so moving and poignant, and I can only imagine how illuminating that was for not only viewers, but the largely ignorant medical community at the time.
It does indeed seem like you’re very good at managing your energy, and could certainly be a wayshower for others.
~S
August 15th, 2007 6:06 pm
How unfair for you Colleen. You have such a zest for life, it must be very hard and frustrating to budget your energy.
August 15th, 2007 6:07 pm
I think you have dealt with the 30 cards very well. And I love you!!! xo
August 15th, 2007 6:20 pm
Years ago I had a co-worker who came down with chronic fatigues syndrome. She wasn’t diagnosed for over a year and I remember struggling with trying to get my mind around whatever her disease was. You are correct in that those of us on the outside are not as intelligent as we could be when we become aware of someone having this disease. You probably do a great service to those that have it.
August 15th, 2007 7:01 pm
When I contracted it I was only 27, working six hour days in a daycare. I used to take the kids up to a church parking lot where they rode big wheels so that I could lay on the cement with my head on a speed bump where I watched them from.
I would have watched Golden Girls if I knew one of the characters had CFS. I had to laugh at the word “wayshower” because I was reading it as “shower” as in not a bath and it confused me at first, until it hit me.
It’s like you feel like your coming down with the flu, but then it never comes. You just stay in the low grade flu feeling.
August 16th, 2007 1:58 am
I was amazed when I read the story about Laura Hillenbrand a few years ago. You are to be commended for researching this condition and recognizing what you have to do to live each day to the fullest.
August 16th, 2007 7:50 am
Thanks for sharing your situation. The hardest thing I have to deal with is getting others to realize that I may be able to operate at a high level of energy one day and not be able to repeat that effort on a regular basis. No matter how hard I “will” myself to get up and go, there are too many times I simply cannot do it. My body will not cooperate with my mind.
August 17th, 2007 2:06 pm
I only “know” you with CFS… and you look so full of energy, it’s hard to believe. Don’t get me wrong, I am a weak person who needs a nap every now and then to recover…
August 17th, 2007 2:38 pm
Martin scolded me for thinking I might have CFS. I tend to diagnose myself alot. The Restless Leg Syndrome commercial has been getting my attention lately even though I know my own is from overworking my calves at the gym! LOL. I drive my doctor nuts. I forget that the MVP does have this effect on me. I didn’t know for a long time that people with MVP are also prone to UTIs and IBS things I’ve also been plagued with most of my adult life. Our bodies are strange and wonderful beings.
August 17th, 2007 7:00 pm
I was diagnosed with it this past spring through a blood test, after a series of visits to the doctor for …. what else? extreme fatigue. I had high levels of Epstein Barr antigens (antibodies?). The Dr. did a follow up with an MRI of the brain because I had other symptoms as well.
Thanks for the info about the latest info from Dr. Reeves. I do think stress has been a huge mitigating factor in causing the onset of the symptoms.
Learning to live with it has been the toughest and most trying time of my life to date. I have found some coping skills, but it’s still hard to get family and friends to realize that when I say that I feel like collapsing, I AM collapsing physically, and I don’t just need a “nice walk” or a “nice nap” to wake me up.
In fact, a lot of the time, I wake up from a nap feeling like I’d just run a marathon and my body won’t accept that it’s just had some rest. The frequent sore throats and swollen glands make me feel like I’ve come down with the flu.
I find it difficult to blog on some days; trying to come up with a coherent though when your brain has gone into a fog is maddening.
Here’s to the “up” days, Colleen. We really know how to appreciate them.
August 17th, 2007 7:49 pm
In the early days I had chronic sore lymph nodes to the point where it hurt to move my neck, and the fatigue felt more heavy and paralyzing. I have read that in the later stages (which I am in) it almost seems like nothing is wrong, but in reality you have learned to protect yourself from overdoing and have learned to manage what energy you do have by curtailing activities (no full time job since the onset for me).
I’m curious what kind of blood test was used to determine CFS. I didn’t know there was one. Is it the one that tests for Epstein Barr? I’ve had that and it showed I have had it, but I was under the impression many people do and never get CFS. Blood tests do show that I make antibodies against my thyroid, which is an auto-immune response. Any kind of antibody production in the body shows that you are compromised, as your body is in fight mode, whether the culprit is real or not. So maybe they determined it from your EB antibodies.
Most people can trace CFS onset to an incident. Mine was viral. I was sick with something like the flu, got better, then started to get sick again a week later again, which I thought was strange. It turned out that I never got fully sick and never got fully better. It was like having a low level flu all the time. I know other people who have entered CFS through physical injury or an environmental toxic exposure, something that stresses a body with the predisposed genes for this.
I agree that feeling misunderstood by others is almost as bad as dealing with the fatigue. And people think when I say “fatigue” I mean sleepy tired, which is not the case. It’s more like exhaustion. Too exhausted to even sleep sometimes.
June 29th, 2011 11:05 pm
[…] 11. I was talking to another blogger last week who, like me, has Chronic Fatigue, and directed her to this description I wrote a couple of years ago about it: Sometimes I think having chronic fatigue is like having a drinking problem. When I partake in a social life, I live it up large, but soon I have to sneak away to find a place to sleep it off. As I rest in my own little world, hearing the voices and sounds of others carrying on, I feel illicit and sadly set apart. But if I don’t regularly nip at the nap, if I go too long and do too much I find myself staggering, my words start to slur, and my brain can no longer add two and two together. I get hangovers too. For every few hours I spend out, I need to match those hours recovering at home. More, including some great comments, HERE. […]
June 30th, 2011 2:30 pm
One thought: with all that time in the garden, make sure you were tested for late Lyme Disease. It can go undetected and be one of the causes of chronic fatigue, especially is ‘fibromyalgia’ goes along with it. Just a thought…..
June 30th, 2011 3:34 pm
Thanks, Dot. I have been tested for Lyme’s Disease and it came back negative. There are some similarities between it and CFS.