I have read this many times before but found it again and thought I would share it. It is written so well and expresses how lupies feel in general… I did not write this although it fits me well…
A letter to be shared with friends and family
by Theresa Stoops in Florida
WHAT YOU SHOULD KNOW ABOUT ME
My pain – My pain is not your pain. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is not well understood, but it is real.
My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
My forgetfulness – Those of us who suffer from it call it brain fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation caused by chronic pain. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.
My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
My depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from Chronic Pain as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My ability to control my appetite is broken, and nobody can tell me how to fix it.
My need for therapy – If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot- filled. If I can stand the pain, regular massage can help, at least temporarily.
My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days, weeks, or even months. In fact, the good days are what keep me going.
My uniqueness – Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, hip pain or shoulder pain, or knee pain, but I do not have exactly the same pain as anyone else. I hope that this helps you understand me,
I have shared these thoughts with many “Lupies”, as we call our self, and they agree with me. So when you see someone at the store who gets out of the Handi-cap space and they look fine — Do not judge them as you may Not know their Inner pain.
==== And always remember I LOVE YOU! ====
I found this article interesting and thought I would share it. It discusses how sleep is important not only for us lupies, but for everyone. Enjoy the reading… this article is from the summer 2010 edition of the magazine “Lupus Now”, cover story.
Sleep Easy – Why Sleep Is Critical When You Have Lupus
By Jenny Thorn Palter
Autoimmune diseases, including lupus, run in Karen Avery’s family. “My brother has discoid lupus, and I lost my cousin to lupus three years ago. She was only 42—the age I am now,” she says.
Avery was diagnosed with lupus in 1989 while in college. “I remember vividly the day I got sick; I fell asleep in class, and when I woke up my hands were blue. I stood up from my desk, and I was in so much pain, I thought, ‘I must have the flu.’ I have always had sleep issues and great difficulty sleeping at night. Plus, I wasn’t eating right, I wasn’t exercising; I was running myself into the ground,” she says.
Today, Avery is a managing director for Marsh & McLennan Companies, an insurance brokerage and consulting firm based in New York City; she runs a global consulting firm for the company. As if that were not enough, she is a new single mother of one-year-old fraternal twin girls, Erika and Eden.
Although Avery has, for the most part, been successfully managing her disease for years, she has been hospitalized four times since 1989 with lupus flares. She believes every flare was caused by a significant and prolonged lack of sleep. For her, getting the right amount of sleep is essential.
What’s in a Zzzz …?
Until the 1950s, most people thought of sleep as a passive, dormant part of daily life. We now know sleep affects our daily functioning and our physical and mental health in many ways we are just beginning to understand.
According to the National Institutes of Health (NIH), approximately 70 million people in the U.S. are affected by a chronic sleep disorder or intermittent sleep problem. NIH reports that women suffer from lack of sleep more than men do; these sleep problems increase in frequency as women age.
The 2009 Sleep in America™ poll, conducted by the National Sleep Foundation (NSF), found that compared with those in poor health, people in good health are two to three times more likely to work efficiently, exercise, and eat healthfully because they are getting enough sleep.
Add lupus to the mix, and the importance of good sleep takes on an even more important role.
Is Sleep Related to Disease?
Sleep deprivation can be harmful to the immune system. Research done through the National Institute of Neurological Disorders and Stroke has shown that neurons that control sleep interact closely with the immune system. For example, as anyone who has had the flu knows, infectious diseases tend to make us feel sleepy. This probably happens because cyto-kines—chemicals that the immune system produces while fighting an infection—are powerful sleep-inducing chemicals. Sleep may help the body conserve energy and other resources that the immune system needs to mount an attack.
Daniel McNally, M.D., a pulmonologist and director of the University of Connecticut’s Sleep Disorders Center, agrees that people with a chronic illness, especially those who live with chronic pain and must deal with sleep-disrupting effects of medications, are likely to have more sleep problems on average. “Being able to help these people with ways to sleep better may give them a bit of relief,” he says. “Here at UConn, we try to train our medical students and residents to make sleep part of their health review with the patient.”
McNally says the university’s medical school curriculum includes four class hours on sleep. “That puts the university in the top 20 percent of medical schools in the country for the amount of time spent teaching about sleep,” he says.
The NSF poll also found that only about 40 percent of Americans feel sleep is as important as exercise or eating well to overall health and well-being. Only 32 percent of those who reported having sleep problems discussed it with their physician. McNally is not surprised.
“Many of the problems with sleep come about because people take it for granted and skip on sleep so they can do ‘x’ or ‘y,’ and then wonder why they feel poorly. I’m always frustrated when someone who should be getting adequate sleep says, ‘Can’t I just take more vitamins?’ ”
How Much Sleep Do We Need?
How much sleep we need depends on many factors, including age. While teenagers need about nine hours of sleep, seven to eight hours of sleep a night appears to be the best amount for most adults. The amount of sleep a person needs also increases if he or she has been deprived of sleep in previous days. Getting too little sleep creates a “sleep debt,” which is much like being overdrawn at a bank. Eventually, your body will demand that the debt be repaid.
We don’t seem to adapt to getting inadequate sleep, either; we may get accustomed to a sleep-depriving schedule, but our judgment, reaction time, and other functions are still impaired.
What’s worse, the practice of “burning the candle at both ends” that is common—and even respected—in Western industrialized societies has created so much sleep deprivation that what is really abnormal sleepiness has become the norm.
But sleep deprivation is dangerous: Sleep-deprived people who are tested by using a driving simulator, or by performing a hand-eye coordination task, perform as badly as or worse than those who are intoxicated.
Are You Making Sure of Sleep?
When Avery decided to have her children, she vowed to take control of both her work hours and her sleep hours. To be sure to get enough sleep to prevent her lupus from flaring, Avery has implemented a variety of strategies. Read her tips for better sleep at lupusnow.org/sleep.
“Without sleep I will have a lupus flare, so sleep is critical for my overall health and well-being,” Avery says. “The quality of my life has really improved over the last six, seven, eight years, because I really took control,” she says. “I said, ‘I’m going to get more sleep, I’m going to exercise, I’m not going to be too dependent on medication, although I have to take it sometimes; I’m really going to force myself to do these things,’ and it’s made a huge difference.”
Tips for a Good Night’s Sleep
- Set a schedule. Go to bed at a set time each night and get up at the same time each morning. Disrupting this schedule may lead to insomnia. “Sleeping in” on weekends also makes it harder to wake up early on Monday morning because it resets your sleep cycles for a later awakening.
- Exercise. Try to exercise 20 to 30 minutes a day. Daily exercise often helps people sleep, although a workout soon before bedtime may interfere with sleep. For maximum benefit, try to get your exercise about 5 to 6 hours before going to bed.
- Avoid caffeine, nicotine, and alcohol. Avoid drinks that contain caffeine, which acts as a stimulant and keeps people awake. Sources of caffeine include coffee, chocolate, soft drinks, non-herbal teas, diet drugs, and some pain relievers. Smokers tend to sleep very lightly and often wake up in the early morning due to nicotine withdrawal. Alcohol robs people of deep sleep and REM sleep and keeps them in the lighter stages of sleep.
- Relax before bed. A warm bath, reading, or another relaxing routine can make it easier to fall sleep. You can train yourself to associate certain restful activities with sleep and make them part of your bedtime ritual.
- Sleep until sunlight. If possible, wake up with the sun or use very bright lights in the morning. Sunlight helps the body’s internal biological clock reset itself each day.
- Don’t lie in bed awake. If you can’t get to sleep, don’t just lie in bed. Get out of bed and do something else, such as reading, watching television, or listening to music, until you feel tired. The anxiety of being unable to fall asleep can actually contribute to insomnia.
- Control your room temperature. Maintain a comfortable temperature in the bedroom. Extreme temperatures may disrupt sleep or prevent you from falling asleep.
- See a doctor if your sleeping problem continues. If you have trouble falling asleep night after night, or if you always feel tired the next day, then you may have a sleep disorder and should see a physician. Your primary care physician may be able to help you; if not, you can probably find a sleep specialist at a major hospital near you. Most sleep disorders can be treated effectively, so you can finally get that good night’s sleep you need.
(Adapted from When You Can’t Sleep: The ABCs of ZZZs, by the National Sleep Foundation, courtesy of the National Institute of Neurological Disorders and Stroke)
That one word says it all! I have not been well lately, in a flare, and now my back has gone out too! I have to rant about it here though, since my family has seen fit to tell me to quit talking about the pain and buck up and get over it. Hence, the other reason for the one word title.
Apparently, discussing your pain and feelings about it is not allowed. You have to emit sunshine and rainbows and keep the other things in hiding, behind a smile to pretend all is well. Basically, it means that they are sick and tired of hearing about the issues I am having. If they think they are sick and tired, how do they think I feel? I guess that it is a moot point.
So, like the good little wife and mother I am, I will trudge ahead, doing my work and not uttering a sound of dissent, or even resting up. In the end, I guess I can relax when I am dead. Yes, this is a pity party in a way, however, it is also a sad fact that those of us with chronic diseases deal with a lot. No one wants to hear about our struggles. No one wants to hear our pain. No one wants to deal with the issues. We are forced to smile and pretend and then we get sicker, because we are trying to push it all back and in the end, it always comes back and gets us. So, the moral of this story is, I will trudge forward, but when I am flat on my back, do not expect me to jump up and continue, because it is the aftermath of the trudging I did when we were all pretending that nothing is wrong.
It is a sad commentary on those of us with lupus or other chronic diseases when we face this type of behavior in the world, yet we expect a warm environment at home and sometimes, we do not get it. I am thankful today, that I have this blog where I can vent and rant against this type of thing, and hopefully share with others who suffer the same types of problems. In this healthy way, I can get it out and let it go.
Thanks for letting me vent…