My Brain Hurts

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*This post was was made possible by the nice folks over at Chronic Migraine Awareness. They said their pictures said they could be shared. Stop over at their site. It is fantastic




*https://www.facebook.com/ChronicMigrainAwareness

What Those With Chronic Pain or Illness DO Want to Hear You Say

My youngest daughter's undergrad work was in the area of psychology. She is currently working with autistic children. Anyway, she is always pulling up great articles for me that are a great quick read. Here is another awesome one she found for me at,"Psychology Today".  I've also seen some pamphlets out sharing this same information to promote Bernhard's book, How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers, but I haven't been able to get my hands on any myself.

Turning Straw Into Gold

Illness through a Buddhist lens.

by Toni Bernhard, J.D.

What Those With Chronic Pain or Illness DO Want to Hear You Say

Here’s what the chronically ill wish you’d say to them.

Published on July 5, 2012 by Toni Bernhard, J.D. in Turning Straw Into Gold

 ...I thought it might be helpful to let others know what we wish they would say to us

“You look so good, but how are you really feeling?”
It’s hard for us to respond to comments like, “You look so good” (or the always dreaded, “But you don’t look sick”) because we know that you’re just trying to be nice. If we respond truthfully with, “Thanks, but I feel awful,” you might be embarrassed or think we’re being ungrateful. It would be such a relief to be asked a question that goes to the heart of the matter: “How are you really feeling?”

“I’m going to the grocery store, can I pick anything up for you?”This is a helpful question, as opposed to, “Call me if there’s anything I can do” (from last week’s piece). As I said there, we’re unlikely to respond to such an open-ended offer, meaning we won’t call and say, “Can you go to the grocery store and get me some dish soap?” We don’t want to make you go somewhere that you aren’t otherwise going. But if you let us know that you’re already going to the store, that’s a different matter entirely!

In fact, the more specific your offer of help, the better. For example, we’d love to hear an offer to do one of those life tasks that back up for us because we’re not well enough to get to it: take our car for an oil change (we’ll pay for it!); weed in our garden for a bit; do a load of laundry; even clean our refrigerator.

“It must be hard to be sick and in pain all the time,” or “Not being able to work must be so frustrating,” or “I imagine it’s a daily grind to have to pace yourself so carefully.”  
These comments are examples of “active listening,” a child raising technique I learned when my two kids were young. I wasn’t always as skillful at it as I wanted to be, but the idea is to let your kids know you’ve really heard their concerns by feeding back to them, in your own words, what they’ve said.
For example, if your daughter is afraid of the dark, instead of trying to talk her out of how she’s feeling by saying, “There’s no reason to be afraid of the dark,” or “You’re too old to be afraid of the dark,” you feed back her feelings to her by saying, “The dark is scary to you.” When you actively listen in this way, children feel heard and validated. This makes it easier for them to overcome a fear because they know you’re taking their concern seriously and that you’re trying to understand it from their point of view. We who are chronically ill want to feel heard and validated. We want to know that you understand how we feel. In fact, everybody—sick or not—wants to know that others understand them!

To "active listen," put yourself in another’s shoes and think about how you’d feel if you were in his or her circumstances. Then feed those feelings back by saying, for example, “You must feel sad and disappointed that you can’t go to the party.” I hope all of you have experienced the relief that comes from feeling deeply listened to.

“How are you holding up? Do we need to stop visiting so you can rest?”
What a blessing it would be to hear a visitor offer this “prompt.” I’ve lost count of the number of times my body was telling me to lie down, but I didn’t excuse myself. Even if we’re wilting away or are in bad pain, most of us are unlikely to bring it up ourselves because we don’t want to let you down. But if we know you’re aware of and sensitive to our limitations, we’ll respond honestly.

“I miss going out to lunch together,” or “I miss going to the movies with you,” or “I miss going to the mall together.”
Speaking personally, I want to hear a heartfelt expression of the way you feel about how things have changed for us. It lets me know that you value our relationship.

“Don’t feel bad if you have to cancel our plans at the last minute. I’ll understand.”
What a relief this would be to hear! I used to force myself to keep commitments even if I was too sick to leave the house. Invariably, it led to a bad “crash.” I’m much better now about cancelling plans if I have to, but I still feel bad about it unless those plans were made with one of my “it’s okay to cancel” friends. I treasure them.

“Would you like to hear about this crazy adventure I had yesterday?”
You bet I would! Some friends don’t want to tell me about what they’re up to, especially if it’s something exciting. They think that talking about their lives will make me feel bad since I’m so limited in what I can do. But hearing about another’s adventure makes me feel connected to the world and adds real-life adventure to what I often just have to get off the TV.

“I hope you’re as well as possible.”
To those of us living day-to-day with health challenges, this comment is so spot-on that many of us just use the initials AWAP when communicating with each other, as in, “I hope you’re AWAP.” Reflecting on this, wouldn’t it be a compassionate comment to make to anyone? Everybody has his or her share of stresses and sorrows—in sickness andin health. And so, my wish for everyone reading this piece is that you’re AWAP.

Is there something you wish friends or family would say to you? Please feel free to share it with others in the comments section.
© 2012 Toni Bernhard
I'm the author of the How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers, winner of the 2011 Gold Nautilus Book Award in Self-Help/Psychology. Website: www.howtobesick.com
I appreciate your shares on Facebook, Twitter, etc.


See ya next week. I'm in the lovely prodromal phase of a migraine. I'll be back when I come up for air.

Let's Speak Up About Mental Health Issues

Have you seen that new commercial that is on TV. Well, I guess technically it is a Public Service Announcement (PSA). It is the one with Glenn Close in it. Well here's your chance in case you missed it:

I was in shock when I saw the PSA on TV. Literally, I stopped dead in my tracks. Oh, there have been commercials before pedaling antidepressants or antipsychotics, but this the first one I have have seen that talked openly about Mental Health Issues. 


Not less than 24 hours before I was filling out a survey about commercials. What can I say, I was bored. Anyway, it asked if I had every seen commercials for the diseases that I had. Well, I answered no, of course, after all I have so many of them. There just weren't ones that included depression from having chronic illnesses, or adjustment reactions, or mixed connective tissue disease, among other things. This PSA gave me hope that maybe people will finally speak up about behavioral health/mental health issues.


Now I've spoken up about the enormous mental health issue faces our nation and our world. Now it is your turn to get involved. I will be talking more about Mental Health issues in this blog again as National Chronic Invisible Illness Week is coming up, Sept 10 - 16. It is important to address this issue especially that during that week, as half of all Americans will sometime during there life have a mental illness. Please go to Bring Change 2 Mind for more information. 








*The PSA came from YouTube http://www.youtube.com/watch?v=WUaXFlANojQ

Put Your Mask On First - The Power of Emotional Energy

I know that my level of emotional energy often dwindles. I sometimes forget how to recharge my emotional battery. My therapist has spent sometime working on this issue with me. He has done this for a long time because I tend to put the needs of others first So the following is what I learned from him.
  
Of course the energy levels of the chronically ill or disable get depleted due to our various medical conditions. Even relatively healthy people can feel run down and lacking of energy due to something as mundane as the common cold. Illnesses drain our our bodies of energy but various stress and strains in life drain our spirits of emotional energy.


How do get more emotional energy:


1) Make yourself the number one priority. Think about all those TV shows and movies where you see stewardess on the airplane giving the passengers emergency instructions. In those movies she will say something similar to "In case of the unlikely event of loss of cabin pressure, an oxygen masks drop in front of you..  Put the strap of the mask over your head and breathe normally.  If you’re travelling with another passenger who needs assistance, be certain to put your own mask on first before assisting other passengers.” (My son works for Co-Air and he quotes this verbatim at times).

NOT THIS KIND
OF MASK

There is a good reason for this. You are no help to anyone if you are unconscious.  In other words, start getting your own needs met first.

THIS KIND OF MASK

PUBLIC DOMAIN PHOTO  

2)Learn to say "no" when you don't really don't want to do something. This allows you to say "yes" to that which you want to do. In other words, "Don't live to please other people".


3) Surround yourself with positive people. Ideally this is done in person;however, if this isn't possible it can take place online or Skype. Toxic people can suck the life out of you. My household rule is "Be good or be gone".


4) Live in the present. You can't change the past so stop dwelling on it. The "if only's" and "what if's" of life will drive you nuts. And try as you might, you can't control the future. Believe me I've tried and it just doesn't work.


5) Get enough sleep.
-
6) Eat regularly and right, for your medical condition




*******************************************************

       *Laura Hillenbrand wrote a best-selling book while in the midst of   suffering from chronic fatigue syndrome. It was so bad that in interviews she talked about "my broken body." On her best days she had only enough physical energy to drag herself out of bed to write at her computer for an hour or two.

But ah! the miracle of emotional energy. She had a story she cared about. The joy of sharing it filled her with energy. The fun of playing with words and anecdotes gave her fuel. And so she wrote Seabiscuit, about an unlikely horse who became a champion. No one who reads this book could imagine it had been written by someone crippled by an extreme deprivation of physical energy. But that's the power of emotional energy*

*www.enotalone.com/health/4538.h

book picture is a public domain image

A Chronic Illness: No One Wants To Talk About

This is one of those chronic illnesses no one wants to talk about. This illness is a dirty little secret that affects men and women. It is often multi-generational. It is time for people speak up and discuss it. Women often are ravaged by this disease, as are some men. But when men contract the disease, it not uncommon for it to be passed on to their sons. Make sure you read those last two sentences very carefully. 


I have a powerful video for you to watch. I think it speaks for itself, even though the title is a bit strange, and the beginning of the the video is well...You'll see what I mean. Stick with it. You'll get the point.

Yes, according to the medical community, Domestic Violence, as a chronic illness. 1) Domestic violence is a type of repeated pattern of behaviors an abusive intimate partner uses to gain power and control over another. It occurs commonly in the form of physical, sexual, and emotional abuse, is ongoing, and often escalates. Domestic violence occurs in familial and intimate relationships where people are living separately or in the same household, and between individuals in current or former relationships. It is perpetrated regardless of age, income, education, religion, sexual orientation, culture, and race (NCAD, 1999).


The most committed crime against women is between intimate partners, commonly known as domestic violence. In the United States, an act of domestic violence happens every 15 seconds (National Coalition Against Domestic Violence [NCAD], 1999). Women with disabilities experience abuse at twice the rate of women without disabilities. 


Lauren Luke is the woman in the video. Apparently, she is a bit of a celebrity (I never heard of her but then again,  but then I have problems with remembering things). She has this to say about this public service announcement: 


The bruising on my face for the video  wasn't real, but my emotions in that video were. I had a bad experience in the past with a previous boyfriend. He never physically hurt me but I did sometimes fear what would happen next if I said the wrong thing. He could be overprotective and embarrass me in   because of his aggressive behavior. Sometimes it was like living with a volcano which could erupt at any second—I felt I was walking on egg shells (FYI- Walking on Eggshells by Brian K Ogawa is a good book on Domestic Violence) just to keep him from exploding and smashing something across the room.


To open up and be honest about something like this makes us feel weak among our friends and family, but in actual fact there is nothing weak about it..... Back then I knew the whole situation wasn't normal, but I didn't know about the help that is out there. And that is help and support that it's time to stop covering it up.2



If you need help call the National Domestic Violence Hotline at 1−800−799−SAFE(7233) or TTY 1−800−787−3224. rather than contacting the National Domestic Violence via the  computer.  Computer use can be monitored and is impossible to completely clear. If you are afraid your internet and/or computer usage might be monitored, please use a safer computer. 

       






1 http://doctoraana.net/blogs/doctoraana-mag/domestic-violence-a-chronic-illness-rooted-in-the-latino-community
2http://jezebel.com/5923043/youtube-makeup-star-lauren-luke-covers-up-her-bruises-in-powerful-anti+domestic-abuse-psa

*The PSA was provided by Youtube http://www.youtube.com/watch?v=d-XHPHRlWZk

Invisible Illness, Visible Hope

This isn't a real post. It is a figment of your imagination. Actually, it is a commercial. So you can do whatever it is when you come to a commercial. I hope you choose to look at it rather than ignore it, rather then running to the bathroom or go to get a drink. But it is a commercial just the same. But it is telling you about an important event that is coming up.

September 10-16, 2012 is National Invisible Chronic Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved including a virtual conference September 10-14 online for free with speakers.

2012′s theme is INVISIBLE ILLNESS? SHARE YOUR VISIBLE HOPE! This is a chance for participants to upload photos that show their hope to encourage others (both ill and healthy).

There is a Meme “30 Things You May Not Know About My Invisible Illness”, you can sign up to blog for the cause, read guest bloggers’ posts, and get involved in the campaign on Facebook. There is even a free 80-page ebook when you sign up for email updates, with 263 tips! Just go to invisibleillnessweek.com to sign up for the ebook.

With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses. See InvisibleIllnessWeek.com*

*The signs, video and the purple section with accompanying picture have thoughtfully been provided by InvisibleIllnessWeek.com

Coping With Chronic Illness

*This is Video is Called Invisible Illnesses Are Everywhere, "Every Day"




Today  isn't one of my better days. Therefore I am re-posting an article with the permission of the American Psychological Association entitled Chronic Illness:

Chronic illness

There are many types of chronic illness, from diabetes and AIDS to arthritis and persistent fatigue. While medical science has made great strides in developing effective treatments for the physical effects of these diseases, many victims still face a staggering challenge to their mental and emotional health.

One of the biggest fears is the uncertainty associated with a chronic illness. The condition may be sporadic, lasting only a short while. Or, it could be permanent, gradually worsening over time.

Chronic illness can force many potentially stressful lifestyle changes, such as giving up cherished activities, adapting to new physical limitations and special needs, and paying for what can be expensive medications and treatment services.

Even day-to-day living may be difficult. A study of patients suffering from chronic tension headaches experienced diminished performance in their jobs and social functioning, and were three to fifteen times more likely to be diagnosed with an anxiety or mood disorder.

The need for emotional endurance

Over time, these stresses and negative feelings can rob you of the emotional energy necessary to move forward with your life. Lack of progress in your recovery or worsening symptoms can trigger negative thoughts that heighten feelings of anxiety and sadness, often leading to depression.

Acting quickly to address depression is essential. In studies of patients recently diagnosed with various types of chronic illnesses, the highest risk of depressive symptoms occurred within the first two years. While these symptoms usually diminished, patients with heart disease maintain a significantly higher risk for depression as long as eight years after diagnosis. Physical limitations imposed by heart disease and other chronic illnesses such as arthritis and lung disease are also a common source of depression, particularly among older adults.

Because depression often leads to poor eating habits, lack of exercise, and inconsistent hygiene, it may actually complicate your recovery from a chronic illness and worsen your overall physical condition.

Those battling heart disease are especially at risk. Prolonged depression in patients with cardiovascular disease is a known contributor to subsequent heart attacks and strokes. And heart attack survivors suffering from major depression are three to four times more likely to die within six months.

What to do

Coping with the mental and emotional challenges of a chronic illness requires an approach that is realistic, but also positive. Adapting to your condition or feeling good about the future may seem impossible at first, but it can be done. A recent study of kidney patients undergoing multiple dialysis treatments each week found that their perceived mood and life satisfaction was no different from a control group of healthy people.

A qualified psychologist can help you build the emotional resilience necessary to navigate the difficulties of chronic illness. Working with your physician and other specialists, the psychologist can help develop appropriate coping strategies that will not only reinforce your treatment program, but also help you fulfillment in life regardless of any physical limitations.

Here are some other suggestions for coping with chronic illness:

Stay connected. Establish and maintain quality relationships with friends and family. Many health organizations also sponsor support groups composed of other people experiencing similar challenges. These groups will not only aid your own well-being, but also provide rewarding opportunities to help others.

Take care of yourself. Don't allow worries about your illness to get in the way of eating property, getting rest and exercise, and having fun. 

Maintain a daily routine of work, errands, household chores, and hobbies as much as possible. This will provide you with a feeling of stability amid the chaos and uncertainty of your illness..

The American Psychological Association gratefully acknowledges the assistance of Rosalind Dorlen, PsyD, ABPP, and the Council on Psychological Health of the New Jersey Psychological Health Association in developing this fact sheet. 






*Youtube video: http://www.youtube.com/watch?v=Jgn8jHCQ8Jg
Found originally on the Invisible Illness Week Website