Some days you just can't take any more itching, nausea, fatigue, bloating, memory loss, pain, and uncertainty about the future. Add financial and emotional stress to the way this disease affects your family, and it's a heavy load.
Activities: Some PSCers have found stress relief by adding to their lifestyles certain non-invasive activities that help to soothe the strain of living with PSC. These include acupuncture, yoga, biofeedback, massage, and chiropractic. For others, reasonably exercising to their ability level, can help patients and family members work off their tensions. It would be wise to ask your physician if these activities are OK for you to do.
Friends, family: Our members also know it's important to ask for help from friends and family members. They know they can't do what they used to accomplish and find that taking up someone's kind offer to help in specific tasks can be a great stress-reliever.
Medications: For some patients, antidepressant medications are appropriate in handling depression and anxiety resulting from difficult situations. Medication for depression/anxiety can be a life saver, to assist in coping with problems, reason better, and diminish the anguish that can accompany chronic disease and life's negative circumstances. Many of our members, from children to seniors have a myriad of medical and life issues to deal with. Counseling with a clergy member or trained counseling professional may assist you. Often medical centers have on staff psychologists specifically trained to work with patients who have chronic diseases, and you may want to investigate this. Your physician can make a referral.
Emotions, spirituality: For many PSC patients and caregivers, enriching their spiritual life, however they define it, can bring a sense of understanding and calm.
Finally, cultivating a sense of perspective, a sense of humor can often reframe the situation and may even relieve symptoms.
We've all had them, days where we're sure we'd rather wake up dead or where even the tiniest inconvenience leads to a big explosion, maybe it's that you're too tired to finish that load of laundry, that you're itching so much that a severe case of poison oak sounds like a vacation or you're just plain ticked waiting for biopsy results to come back. Whatever the trigger, PSC and stress go hand in hand like peanut butter and jelly on a third date.
So, what are your options other than pulling out your hair, yelling at your loved ones or crying buckets? Well, there's medication, there's violence (which I don't recommend) and then there's spirituality. Now for some of you, spirituality is a hot button word. You don't want to talk about religion or sitting around in heated caves in the middle of the woods while you expose your "information" to the bunnies and the bats. Not to worry, spirituality is something different for every person I've ever met and that's the good news. The better news is that it offers HUGE relief in busting stress, and that should have you unclenching those jaws and headed towards easy breathing.
Definition: So, what is spirituality then? Well, it's anything and everything that makes you feel connected and a bit freer from the everyday stressors of your world. Dictionary.com defines spirituality as: "1. The quality or state of being spiritual; incorporeality; heavenly-mindedness. A pleasure made for the soul, suitable to its spirituality. --South."
What this means to us is that to achieve stress-busting spirituality it isn't necessary to set foot in a church or synagogue (although there's certainly nothing wrong with that if that's your choice), but there are a myriad of things you can do to become a bit more spiritual, whatever the term means to you. Remember, it's a "pleasure made for the soul" so whatever pleases your soul is, therefore, by definition spiritual.
What works: So, if it's sitting by a stream, dunking your toes in a pool, practicing yoga, petting your cat, or a good long hug that lowers your blood pressure and takes your mind or your body to a serene place, go for it. Don't be ashamed of a good long cry (spirituality sometimes requires tears). Feel free to ask for a hug. Define spirituality your way. Read a book. Take a bubble bath. Write down three things every single day that made your world a better place even if it's something as simple as "the sink is free of dirty dishes." Revel in what brings you joy and don't feel ashamed or judged.
Spirituality is about pleasure and pleasure is a stress-free zone and which one of us doesn't deserve that at least once in while? So, start today. Turn off your phones, yes, all of them. Grab your hubby or your bubble bath or your dog and give spirituality a try. It's not just for organized religion or those who can bend their bodies in ways that would make a pretzel jealous. It's for you. It's for me.
With PSC pleasure doesn't often figure in, so why not create some where you can? Make PSC stand for Pressure-free, Spirituality, Contentment at least for a few hours a week. After all, what do you have to lose?
To see how some other PSCers define spirituality and use it to bust stress in their lives, read on!
Prepared by Sandi P.
I love God and am grateful that God's been a part of my life from the time I was very young. Without God I don't know how I would have survived all that's taken place in my life. I was blessed with an ability to smile in the midst of most things, and I find dark humor hilarious. I love when people say, "I'm glad you're not dead!" If you can't laugh in the face of death, it'll kill you!
I'm especially prone to questioning my faith in God when He gives me something extraordinarily difficult to deal with. It's not a question of whether or not He exists as much as it is a question of whether or not He knows what He's doing.
I've never been disappointed, though, with God. I've always been strengthened when I've asked for strength, and comforted when I've asked for comfort. Help and healing has often come in unexpected ways, but it's always been there. Each and every investment of faith in Him has been returned tenfold, and His grace has been nothing short of amazing in dealing with my pathetic inadequacies.
So, by all means, God bless. Heaven knows we all need blessings of endurance and comfort. Most importantly, we need peace in our hearts and our minds; an assurance that God lives, and loves each and every one of us; that these experiences will work for our own good. Yes, please. God Bless.
I stare at my favorite tree, the one whose branches extend onto our deck as if it belonged with us. This is where twenty years ago my six year-old son and I sat for hours feeding the chickadees and nuthatches that would land on its hanging branches. That is where my son recovered from a flare-up, patiently waiting for the birds to find his seeds, gleefully watching the birds gathering their friends, and patiently waiting to get well again.
My eyes always settle on this old pine tree when my mind is racing with thoughts I cannot control. This is where I can be one with my son, where I can find healing thoughts that can be channeled into constructive action. It is not watching the tree that gives me peace. It is the memories alive in this tree that obliterate my paralysis.
It took me years to realize that I wouldn't find genuine peace just by immersing myself in nature. I now know that nature energizes me to enter the "I can do it" mode, and it is only through action that I find my peace. Running does the same for me. Conscious of the regularity of my breathing and the rhythm of my steps as I run through woods, country roads, city streets, I reach a state that gives me clear thoughts and the urge for action.
These days, peace also comes to me by being with people who share my passions. The Jacksonville and Chicago PSC Partners conferences had this impact on me. My exchanges with my PSC Partners friends and my faith in the immense power inherent in organized grassroots efforts give me peace, and knowing that I can create change, even a miniscule dent towards reaching a cure, brings me serenity and the readiness to act on my thoughts.
Laughter is so therapeutic. It releases brain chemicals called endorphins that promote a feeling of well-being. Laughter also relaxes and unwinds your stress knots, lowers your blood pressure, strengthens your immune system, and improves your circulation.
Laughter studies show that laughing can relieve allergy and arthritis symptoms, increase memory retention and creativity in the workplace, lessen pain from chronic diseases, and strengthen the immune system. Interest in humor's effects has grown so much that the field has a name-psychoneuroimmunology; the study of how psychological factors, the brain, and the immune system interact to influence health.
Physiology: Laughter is by no means a cure-all for illnesses, but some researchers say that people who laugh are less likely to get sick. Lee Berk, a pioneer in laughter studies and associate director of the Center of Neuroimmunology at Loma Linda University School of Medicine, maintains that laughter beefs up the immune system. In his 1989 study, published in the American Journal of Medical Sciences, he found laughter reduces blood levels of cortisol, epinephrine, and other substances which, when at high levels, tend to suppress the immune system. Decreasing these levels is believed to be beneficial.
Research has shown that laughter boosts immune function by raising levels of T-cells, Gamma-interferon, and B-cells that fight disease and infection. Laughing also forces moisture from the lungs so they don't harbor disease as much. There are secretions in the tears that only happen after laughter that clear the eyes. Laughing even raises your energy levels and body temperature.
The brain: You need laughter for creativity especially in the workplace because it fully engages the brain. It's also a great team-building tool; encouraging better communication.
Humor draws attention away from the source of discomfort. Laughter is just good for our psychology because people regress to a childlike state and, socially . . . it's contagious. It's been called the universal language because no matter what language you speak, if people are laughing you can laugh with them. Humor is a coping tool that can minimize our suffering by giving us power in a powerless situation.
Robert Provine, a behavioral neurobiologist at the University of Maryland, found that laughter functions as some kind of social signal. Studies have shown that people are 30 times more likely to laugh in social settings than when they are alone, in the absence of pseudosocial stimuli like television. Even nitrous oxide, or laughing gas, loses much of its potency if taken in solitude.
Says Willibald Ruch, a psychologist at the University of Dusseldorf: "To many researchers, laughter is about strengthening social bonds. Laughter occurs when people are comfortable with one another, when they feel open and free. And the more laughter, the more bonding within the group. This feedback 'loop' of bonding-laughter-more bonding, plus the desire not to be singled out from the group, may explain why laughter is often contagious-dramatically so. In 1962, for example, an epidemic of laughter among schoolgirls in Tanganyika lasted for six months and forced officials to close schools."
Bill Cosby once said: "Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it."
Chronic illness: It's more important than ever to find light and laughter in life, especially when living with a chronic illness, which can negatively impact your mood and outlook. Studies have shown that laughter reduces stress and lessens pain from chronic diseases-it's difficult to feel pain while laughing. (Exception: those recovering from abdominal surgery!) Laughter draws attention away from the source of your discomfort and promotes overall wellbeing. Having a well-developed sense of humor can even promote sleep! Norman Cousins wrote in Biology of Hope, that ten minutes of belly laughter would give him two hours of painless sleep. There's an Old Testament proverb that states: "A cheerful heart is good medicine, but a downcast spirit dries up the bones."
Don't let those bones dry up-instead, laugh it up! Here are Ten Steps for Developing Your Sense of Humor: