Tai chi is one of the therapies that I’m definitely going to try. Neurology Now’s article describing how tai chi and yoga invokes the mind-body connection to relieve pain cemented my decision. Physical benefits aside, releasing tension and teaching mindfulness are the most powerful effects of tai chi and yoga, according to the article.
Mindfulness is nothing more than paying calm, moment-by-moment attention to what you are thinking and feeling. Ideal for cultivating greater awareness of the connection between mind and body, mindfulness has been shown to positively effect a range of autonomic physiological processes, such as lowering blood pressure and reducing overall arousal and emotional reactivity.
Yoga and tai chi combine the stress-reducing effects of mindfulness with low-impact movement, which is especially helpful for people who have chronic pain or physical limitations that make them relatively sedentary.
I’m captivated by the stillness of tai chi and am looking forward to trying something new. Seattle studio Embrace the Moon, which began as a program in a medical setting of tai chi for pain reduction, starts a new schedule next week. I’ll be there.
Embrace the Moon’s overview and description of tai chi styles is (relatively) concise and easy to understand. I’m finally understanding more about this discipline, which totally confuses me.
Neurology Now is an excellent free patient education magazine published by the American Academy of Neurology. You’ve probably seen it in your neurologist’s office. You can sign up for a free subscription to the magazine or read it online. I love getting it in the mail — I actually remember to read it.
Not helping around the house, canceling plans, burdening loved ones. … Guilt may be the most frequently recurring topic on The Daily Headache. For both readers and me, the guilt nearly always revolves around letting other people down.
The impact of chronic pain — or any other chronic illness — on our family and friends is undeniable. Episodic migraines or other disabling headaches also affect relationships significantly.
So you’d think there would be a wealth of information about helping families and loved ones cope with your illness. Not so much. Fortunately, New York Times columnist Jane Brody explores the topic in Chronic Pain: A Burden Often Shared. She writes:
Healthy family members are often overworked from assuming the duties of the person in pain. They have little time and energy for friends and other diversions, and they may fret over how to make ends meet when expenses rise and family incomes shrink.
It is easy to see how tempers can flare at the slightest provocation. The combination of unrelieved suffering on the one hand and constant stress and fatigue on the other can be highly volatile, even among the most loving couples — whose burdens are often worsened by a decline of intimacy.
The American Chronic Pain Association‘s Family Manual, which Brody references in the article, is $25. I also recommend Chronic Pain and the Family. The websites for the Well Spouse Association and the National Family Caregivers Association are also helpful. I also provide resources in Friends, Family & Illness.
[via In Sickness In Health]
The American Pain Foundation and HealthCentral have created an online exhibit to highlight the importance of creativity activities in coping with chronic pain. The exhibit includes poetry, prose, digital photos, artwork and crafts, and inspirational videos. Everyone who has made a submission has included a paragraph describing how their art represents their pain experience.
Although the deadline has passed for submitting entries for mention at this month’s American Pain Foundation’s anniversary celebration, the exhibit is ongoing. You may add your contribution on the APF Pain and Creativity Center.
Whether you’re interested in looking at others’ work or submitting your own, recognizing the importance of creativity in health is inspiring.
Explaining to my family, friends and employers that my migraines are debilitating has been challenging. There are many misconceptions about headache disorders and migraine, so people don’t understand the difference between an occasional headache and CDH or migraine.
The best way I’ve found to let those around me know the seriousness of this illness is to let them see me in the throes of a migraine (which is not an easy feat). If the people in your life are willing to talk about your pain, there are many good resources to explain the severity of the illness.
The best resource I have found is a book called Chronic Pain and the Family, which I reviewed on Blogcritics. (If you decide to buy the book, I’d appreciate it if you went to Amazon through the link from my blog rather than Blogcritics — it helps pay for The Daily Headache.)
There are other good resources that won’t cost you anything, like these significant facts about migraine:
- Between 28 million and 35 million (depending on which estimate you look at) Americans have migraines
- Of these migraine sufferers, 91 percent aren’t able to function normally during a migraine
- An estimated $17 billion in health care and lost labor costs result annually from adults suffering from migraines
The National Headache Foundation has terrific information on how headache affects a sufferer’s life. This fact sheet (PDF) describes migraine and its suspected mechanics. It even recommends a children’s book that explains the disease to kids. ACHE also has good information.
Trisha, an RN with chronic migraine and occipital neuralgia, is seeking patient input for an article for she is writing for a nursing journal. Her focus is patients’ perspectives on chronic pain and what their health care experiences have been. She says,
The reason I want to write this article is because after almost two years on the other side of the fence, so to speak, it’s become glaringly obvious that there is a need for the healthcare community to hear first-hand how it feels to be treated with discrimination simply because you have a disability that isn’t visible to the naked eye. Being refused treatment in the ER, being accused of drug-seeking behavior, and not having access to adequate pain relief complicates the issues at hand and may, in fact, make the pain and suffering we face worse than it already is. Chronic pain sufferers deserve just as much respect and dignity in treatment situations as any other person with a disabling disorder.
Trisha has created a questionnaire for patients who would like to contribute. She asks many questions, but many only require short answers. More importantly, they are questions that anyone with chronic illness should think about. Your responses will help you better understand your headache history and the impact of illness on your life. Think of it as self-administered therapy.
Chronic Pain Questionnaire
I have a questionnaire I’d like to get as many people to fill out **realistically and kindly** as possible in order to base the article on as wide a reference base as I can reach and get responses from. If you’re interested, please fill this out and email it back to me by September 1.
Thank you in advance for taking the time to fill out this questionnaire. Please note that doing so gives me permission to use this information, in context, in an article or articles having to do with chronic pain and associated issues. If you prefer not to answer a question or two, please put N/A in that spot so I know you didn’t overlook it. I appreciate your input.
- What is your diagnosis?
- How long have you been ill?
- What would you say is the attitude of society today toward people with chronic pain issues?
- What is your biggest struggle in day-to-day life?
- If you could say one thing to the healthcare community, what would it be?
- In your opinion, what is the biggest obstacle to receiving quality care and pain control?
- Do you feel your pain relief needs are adequately met?
- How many doctors did you have to see before you found one willing to treat your pain in an effective manner, if you have found one at this point in time?
- Do you feel that chronic pain sufferers are seen as people with legitimate complaints?
- Does the use of illegally-obtained medication by high-profile individuals negatively impact the chronic pain patient seeking relief today?
- What would you tell society about your situation if you were given the opportunity?
- Do you believe there is a medication that, if made available to you in the correct dosage, would assist you in living a more pain-free life?
- Do you feel that chronic pain sufferers face discrimination when applying for Social Security Disability?
- Do you feel that chronic pain sufferers face discrimination in the workplace?
- How has your quality of life been affected since you became ill?
- Have you ever been refused treatment or accused of drug-seeking behavior in an emergency room setting when you’ve gone to one while in intense pain?
- Have you ever been told that your pain is all in your head?
- Does your pain significantly impact what you can do on a day to day basis?
- Have you lost your job or livelihood because of chronic pain?
- Has your family situation changed because of chronic pain?
- Have you lost friends because of chronic pain?
- Do you need help doing things that you used to be able to do independently because of your pain?
- Does your pain cause you to say or do things that embarrass you?
- Are you being treated for depression or anxiety due to chronic pain?
- Do you often pretend to feel better than you actually do in order to avoid uncomfortable situations or comments?
- What modifications have you had to make to your home to accommodate your chronic pain?
- Do you take narcotics for your pain?
- Do you take anti-seizure medications for your pain?
- Do you have trouble sleeping? 30. Do you have trouble concentrating?
- Do you have trouble staying awake?
- Are you able to exercise on a regular basis?
- Have you gained weight since you became ill?
- Have you lost the ability to enjoy the things you used to look forward to?
- Have you had to change careers or cut back on your work hours due to chronic pain?
- Do you feel like people avoid you because you are ill?
- Do you see a pain management specialist?
- If so, is this sufficient for pain control or relief?
- Do you feel that people with invisible disabilities are looked at differently than people with obvious physical handicaps?
- Is there anything else you’d like to say?
- Please provide your first name and last initial or a believable pseudonym I can use:
- Just for statistical purposes, can I please have your gender and age? You don’t have to answer this one, but it would assist with data groupings.
Thanks again. I appreciate your time and effort. –Trisha