One of my goals for this year was to make more time for fun, but I don't think I'm doing a very good job at that so far. I'm kind of weary of my weekend routine.
We tend to be very kid-centered: our kids have lots of fun on the weekends! They're at an age when they want to spend a lot of time with friends, so when the weekend comes, we drive them to various events and (more often) host their friends at our house to play or spend the night. Believe me, I'm grateful that they are now well enough to have such active social lives, and I've always been happy that they like to have their friends at our house. I just think that maybe I'm losing sight of my own needs.
During the week, I have a routine that works very well for me. As long as both boys are well, everyone is out of the house by 8:15 am, and I have a full four hours of productive time before I have to stop for lunch and a nap. As you know, four hours of productive time is amazing for someone with CFS! Even if I'm not feeling well, I can usually still lie on the couch and catch up on reading, keeping a list of what I'll do when I'm upright again.
On weekends, my time is compressed. I stay up later with my husband, watching a movie or favorite TV shows that we taped during the week (since we go to bed at 9:30 most weeknights!), so I need to sleep later in order to get my required minimum of 9 hours of sleep. Then I make a big breakfast. It seems like just a couple of hours later, it's already time for my nap. Once I get up, it's time to start making dinner. So, my weekends feel full of just rest and cooking.
Complicating matters is, as always, CFS. We start with fewer hours in a day than healthy people. When I think of what I'd like to do on weekends, my top choices are things I really can't do - take a hike with the family, do something active outdoors, even going to the movie theater (a rare treat) is tiring and difficult to schedule around my rest time and my need to eat at regular intervals to stave off low blood sugar. I'd also like to have friends over more often, but I need to be in tip-top shape for that kind of exertion.
Somehow, though, I need to make more time for fun for myself. I guess that won't be a problem for the next two weeks because we have full weekends coming up, with travel to see family and our annual Mardi Gras party (I have my fingers crossed I'll be in good shape for it!).
So, what's a girl with CFS to do? How do you have fun?
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
I have no idea how to have fun! Socialising went right out of the window some time back. I am actually going out tomorrow night to some sort of healing group. At least it will be a change of scene.
ReplyDeleteFun kind of loses it's spontaneity when you have schedule it in.
Jo
Hi - I've been reading your blog for a while; thought I'd take a bold step and mention something to you.
ReplyDeleteAfter I nearly died in a car accident in 2002, I was recovering; then diagnosed with CFS. I was put on all kinds of medications; pain relievers, etc. It was miserable; they also found out my thyroid had been damaged in the accident, so I still have to take Thyroid supplement.
After about 5 years of misery as you seem to describe, I decided to dump all the medication; start eating 100% raw foods, and within 7 weeks I was able to jog; hike, and take a month vacation that involved nothing but non-stop activity.
Recently a friend who also took my suggestion, told me she finally had her life back with the suggestions I made to her.
Yesterday, she also sent me this article which we both felt was revealing and helpful. I'm leaving this here for you to read through. Diane
WASHINGTON – Two drugmakers spent hundreds of millions of dollars last year to raise awareness of a murky illness, helping boost sales of pills recently approved as treatments and drowning out unresolved questions — including whether it's a real disease at all.
Key components of the industry-funded buzz over the pain-and-fatigue ailment fibromyalgia are grants — more than $6 million donated by drugmakers Eli Lilly and Pfizer in the first three quarters of 2008 — to nonprofit groups for medical conferences and educational campaigns, an Associated Press analysis found.
That's more than they gave for more accepted ailments such as diabetes and Alzheimer's. Among grants tied to specific diseases, fibromyalgia ranked third for each company, behind only cancer and AIDS for Pfizer and cancer and depression for Lilly.
Fibromyalgia draws skepticism for several reasons. The cause is unknown. There are no tests to confirm a diagnosis. Many patients also fit the criteria for chronic fatigue syndrome and other pain ailments.
Experts don't doubt the patients are in pain. They differ on what to call it and how to treat it.
Many doctors and patients say the drugmakers are educating the medical establishment about a misunderstood illness, much as they did with depression in the 1980s. Those with fibromyalgia have often had to fight perceptions that they are hypochondriacs, or even faking their pain.
But critics say the companies are hyping fibromyalgia along with their treatments, and that the grantmaking is a textbook example of how drugmakers unduly influence doctors and patients.
"I think the purpose of most pharmaceutical company efforts is to do a little disease-mongering and to have people use their drugs," said Dr. Frederick Wolfe, who was lead author of the guidelines defining fibromyalgia in 1990 but has since become one of its leading skeptics.
Whatever the motive, the push has paid off. Between the first quarter of 2007 and the fourth quarter of 2008, sales rose from $395 million to $702 million for Pfizer's Lyrica, and $442 million to $721 million for Lilly's Cymbalta.
Cymbalta, an antidepressant, won Food and Drug Administration approval as a treatment for fibromyalgia in June. Lyrica, originally approved for epileptic seizures, was approved for fibromyalgia a year earlier.
Drugmakers respond to skepticism by pointing out that fibromyalgia is recognized by medical societies, including the American College of Rheumatology.
"I think what we're seeing here is just the evolution of greater awareness about a condition that has generally been neglected or poorly managed," said Steve Romano, a Pfizer vice president who oversees its neuroscience division. "And it's mainly being facilitated by the fact the FDA has now approved effective compounds."
The FDA approved the drugs because they've been shown to reduce pain in fibromyalgia patients, though it's not clear how. Some patients say the drugs can help, but the side effects include nausea, weight gain and drowsiness.
Helen Arellanes of Los Angeles was diagnosed with fibromyalgia in September 2007 and later left her job to go on disability. She takes five medications for pain, including Lyrica and Cymbalta.
"I call it my fibromyalgia fog, because I'm so medicated I go through the day feeling like I'm not really there," Arellanes said. "But if for some reason I miss a dose of medication, I'm in so much pain."
A single mother of three, Arellanes sometimes struggles to afford all her medications. She said she is grateful that a local Pfizer sales representative occasionally gives her free samples of Lyrica "to carry me through the month."
The drugmakers' grant-making is dwarfed by advertisement spending. Eli Lilly spent roughly $128.4 million in the first three quarters of 2008 on ads to promote Cymbalta, according to TNS Media Intelligence. Pfizer Inc. spent more than $125 million advertising Lyrica.
But some say the grants' influence goes much further than dollar figures suggest. Such efforts steer attention to diseases, influencing patients and doctors and making diagnosis more frequent, they say.
"The underlying purpose here is really marketing, and they do that by sponsoring symposia and hiring physicians to give lectures and prepare materials," said Wolfe, who directs the National Data Bank for Rheumatic Diseases in Wichita, Kan.
Similar criticisms have dogged drugmakers' marketing of medicines for overactive bladder and restless legs syndrome.
Many of the grants go to educational programs for doctors that feature seminars on the latest treatments and discoveries.
Pfizer says it has no control over which experts are invited to the conferences it sponsors. Skeptics such as Wolfe are occasionally asked to attend.
The drug industry's grants also help fill out the budgets of nonprofit disease advocacy groups, which pay for educational programs and patient outreach and also fund some research.
"If we have a situation where we don't have that funding, medical education is going to come to a screeching halt, and it will impact the kind of care that patients will get," said Lynne Matallana, president of the National Fibromyalgia Association.
Matallana founded the group in 1997 after she was diagnosed with fibromyalgia. A former advertising executive, Matallana said she visited 37 doctors before learning there was a name for the crushing pain she felt all over her body.
A decade later, her patient advocacy group is a $1.5 million-a-year operation that has successfully lobbied Congress for more research funding for fibromyalgia. Forty percent of the group's budget comes from corporate donations, such as the funds distributed by Pfizer and Eli Lilly.
Pfizer gave $2.2 million and Lilly gave $3.9 million in grants and donations related to fibromyalgia in the first three quarters of last year, the AP found. Those funds represented 4 percent of Pfizer's giving and about 9 percent of Eli Lilly's.
Eli Lilly, Pfizer and a handful of other companies began disclosing their grants only in the past two years, after coming under scrutiny from federal lawmakers.
The message in company TV commercials is clear. "Fibromyalgia is real," proclaimed one Lyrica ad. Researchers who've studied the condition for decades say it's not that simple.
Since the 1970s, Wolfe and a small group of specialists have debated the condition in the pages of medical journals. Depending on whom you ask, it is a disease, a syndrome, a set of symptoms or a behavior disorder.
The American College of Rheumatology estimates that between 6 million and 12 million people in the U.S. have fibromyalgia, more than 80 percent of them women. It's not clear how many cases are actually diagnosed, but Dr. Daniel Clauw of the University of Michigan said pharmaceutical industry market research shows roughly half are undiagnosed. People with fibromyalgia experience widespread muscle pain and other symptoms including fatigue, headache and depression.
After 30 years of studying the ailment, rheumatologist Dr. Don Goldenberg says fibromyalgia is still a "murky area."
"Doctors need labels and patients need labels," said Goldenberg, a professor of medicine at Tufts University. "In general, it's just more satisfying to tell people, 'You have X,' rather than, 'You have pain.'"
While Goldenberg continues to diagnose patients with fibromyalgia, some of his colleagues have stopped, saying the condition is a catchall covering a range of symptoms.
Dr. Nortin Hadler says telling people they have fibromyalgia can actually doom them to a life of suffering by reinforcing the idea that they have an incurable disease.
"It's been shown that if you are diagnosed with fibromyalgia, your chances for returning to a level of well-being that satisfies you are pretty dismal," said Hadler, a professor at the University of North Carolina, who has occasionally advised health insurers on how to deal with fibromyalgia.
Hadler said people labeled with fibromyalgia are indeed suffering, not from a medical disease but from a psychological condition. Instead of drugs, patients should receive therapy to help them "unlearn" their predicament, he said.
Research by the University of Michigan's Clauw suggests people with fibromyalgia experience pain differently because of abnormalities in their nervous system. Brain scans show unusual activity when the patients experience even minor pain, though there is no abnormality common to all.
Clauw's work, however, illustrates the knotty issues of drug company funding. He has done paid consulting work for the drugmakers, and he's received research funding from the National Fibromyalgia Research Association, which receives money from the drugmakers.
While Clauw acknowledges that Lyrica and Cymbalta do not work for everyone, he has little patience for experts who spend more time parsing definitions than helping patients.
"At the end of the day I don't care how you categorize this — it's a legitimate condition and these people are suffering," Clauw said.
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I had a friend invite my husband and me over for dessert a couple weekends ago. It was really nice -- chatting and brownies, what could be better? I want to get my courage up to reciprocate. I think I can do it if I too keep it simple and don't overexert. What do you think? Should I take the plunge?
ReplyDeleteHi Sue
ReplyDeleteI like to come read your blog and thought I would comment on this posting...having fun is a challenge for me too. I am housebound and mostly on my sofa or in my recliner. I have fun by watching a funny show or movie with my hubby....playing scrabble or cribbage...and visiting on the phone with grandchildren. I enjoy taking photos too. I enjoy writing but am looking for a new hobby that makes me smile...still looking!
Hope others come up with better ideas than mine!
I go for massages. Or splurge on something completely unnecessary. I follow a gluten free diet, but sometimes I'll splurge on pizza, cake or doughnut.
ReplyDeleteGreat ideas from everyone! I, too, enjoy watching movies and TV with mu husband, and I love to read. I would like to see friends more and should probably make an effort to do more "easy" entertaining - our friends are very understanding about CFS and don't mind when I have to keep things simple.
ReplyDeleteMaybe I was just being whiney this weekend! I sometimes get feeling restless, though I know in my heart that I'm very fortunate to be as well as I am. Part of my problem has nothing to do with CFS - it's a perfectionist tendency that drives me to want to always be productive and accomplishing something. Guess I need to work on that and make a conscious effort to have more fun!
Sue
Dear Happy in Nevada -
ReplyDeleteThanks so much for taking the time to comment. It's always a pleasant surprise to read a comment from someone who's been a silent reader of my blog!
How wonderful that you found the right approach for yourself to fully recover from CFS! I always like to hear stories like yours, even though CFS is such a variable illness with so many different presentations in different people.
My case is a bit different. I developed CFS following a viral infection, and I know that immune system dysfunction is at the heart of it. I've always eaten a very healthy diet, full of whole, natural foods, even before I got sick. And, in my case, medications have helped tremendously. Medication corrected my sleep dysfunction so that I now wake up feeling rested. And, in the past 18 months, I've improved considerably, thanks entirely to anti-viral medications and low-dose naltrexone. I feel very optimistic that my improvement will continue. As for my two sons, medication (Florinef for treating OI) has provided nothing short of a miracle! It took my older son from being bed-ridden 50% of the time to now living a pretty normal life, filled with school, band, soccer, and an active social life.
Research has shown that there are actually several different sub-types of CFS, and it's good to hear from a wide variety of experiences so we can all try different treatment approaches.
Thank you for sharing your story with me and my blog readers. Perhaps your experience will help someone else!
Sue
Shelli -
ReplyDeleteyes! Your evening with friends sounds very nice. That's probably part of my problem at the moment. I tend to be somewhat isolated sometimes.
I'm fortunate to have some very good friends who've been very understanding about CFS. I've learned (though it took awhile!) that they don't care if I order pizza instead of cooking a big meal - it's the time spent together that counts.
A dessert get-together sounds just perfect because it is simple and easy and entails less exertion.
Enjoy your friendships!
Sue
Hi - just came back because of this latest post on all the things you're doing to have fun, Sue.
ReplyDeleteAs to being that 'over-achiever', from the minute I was born (according to my mother), I was the busiest child; didn't sleep - still don't sleep more than 4 hours a night (and I'm 67).
I started such a habit of doing everything; learning everything - accomplishing so much in music, art, gardening, wood-working; photography and excelling during my school years, that I never knew what it was to 'rest and relax'.
The only time I ever 'relaxed' was when the car accident FORCED me to back in 2002.
I know my 5 children tried to remind me how just take 1/2 hour out each day, but I wouldn't/couldn't do it.
So, my kids were almost happy when I had the CFS; I HAD TO REST, and find other ways to keep my mind active.
My problem was the terrible pain and extreme fatigue just getting up to go to the bathroom.
I noticed you listed NONE of the medications that were warned about in the article I left for you; that's SUCH GOOD NEWS TO ME. I was afraid you might be included in those who were taking these drugs, and wanted to put you on the alert.
I know a viral infection is something that can't be treated with antibiotics; my doctors have told me REST, REST, REST, and a HAPPY MIND were probably two of the best things that I incorporated into my recovery.
Likewise, I'm sure what caused mine was different than yours; the diet I chose propelled me forward so quickly, I'm certain it must have been the critical nature of my injuries and the excessive medications that had side effects (including aches and pains as was warned on the medication's labeling).
In any case, it's good to see you being so strong and helping others by keeping this blog as a place to find some input and share in the common bond we all have (or have had).
Diane
Hi, Diane -
ReplyDeleteIt's really great that you're still interacting with and supporting others with CFS, after recovering yourself. Stories like yours are inspiring.
I am very fortunate that pain has never been a part of CFS for me - other than occasional flu-like aches when I crash - so I've never needed pain medication.
Thanks for stopping by again!
Sue