Yet sometimes the hardest part of chronic illness is its effect on your family, loved ones and friends.  How do you help them cope?  How do you help them to help you?

"Wheelchair Ice Skating"

While chronic illness strikes young and old, women are more likely to affected by many diseases and disorders.  Irritable bowel syndrome, fibromyalgia, multiple sclerosis, and depression are just a few, where women bear the most burden.

What suggestions are there to help your family cope?

1.  Be direct with your family about what’s going on
Be willing to discuss your illness and limitations, but don’t dwell on your illness.  You are more than your illness.  Kids, in particular, benefit from an age-appropriate, honest discussion of what the illness is and what it means for them.  Invite your spouse or partner to come with you to doctors appointments, so that his/her understanding can grow.

2.  Give your family time to adjust
Families need to adjust to living with your chronic illness, just like you do.  Give them time and support.  Be patient.  Also, their learning to cope with your illness is a process, not once and they’ve got it.

Assume that your family is doing the best they can to adjust, even if they’re far from perfect.  Blaming or criticizing isn’t helpful.  Continuing to work on the issue is.

3.  Give helpful guidance
Family and friends often wonder how they can help you, so offer suggestions.  While it would be nice if everyone in our lives were perfectly supportive, that’s not the case.  So feel free to help people to help you.

Explaining what’ll be helpful to you will point people in the right direction.  They can feel useful and you can get some much-needed assistance.  You might use phrases like, “Thanks so much for your concern about my fatigue.  I know you’ve commented that I’m not able to do as much as before, and you’ve kindly offered help.  Would it be possible for you to help me wash the floor, or would it be easier for you to help with grocery shopping.”  Or, “I’d love to go to lunch with you.  However, my pain is unpredictable.  Will it be a problem if I have to cancel at the last moment, or would you prefer I call you when I’m having a good day, and we go spur-of-the-moment?”

Enlisting someone who “gets it” to lead the way with other family members and friends is another option.

4.  When to get help for your family
When family members have a hard time adjusting, have a heart-to-heart talk, (or more than one, if needed).  Encourage them to take care of themselves.  Find ways for them to help you.

Sometimes partners puts their lives on hold.  In this case, say that you prefer them to go to events anyway when you’re not able to.  Or, be thankful that they’re willing to stay home and keep you company.  You might also try to go with your family to events, even if you’re only able to go very briefly… so all of you can enjoy getting out.

Sometimes spouses or kids express anger and resentment about your illness or its effect on them.  Understand this is natural, but help them direct their dissatisfaction towards the illness, not you.  Focus on what you can do, rather than your limitations.

Sometimes support groups or professional help for families can be of great benefit.  Your doctor should be able to suggest resources.

Readers, what have you found helpful to help your family cope?

Other articles you might like:

• Is Your Marriage Affected by Pain?
• Family Issues and Pain

Thanks to Jen Rossey for the photo from Flickr.

Let me start this with some background on myself.  I have RSD (a neurological disease with severe pain  ~HtCwP) in my lower left leg and foot, and in my right foot.  I was diagnosed in March 2009 – after a couple of months of docs trying to find out why I had symptoms with no injury.  So having spent a year in pain, I’ve learned a few things (in spite of myself).

One of the hardest (and most important) steps for me was (and is) acceptance.  And there’s a difference between admitting I’m in pain and accepting that I’m in pain.  When one is injured, you can say, “this really hurts” and know that it’ll get better and go away.  You admit it hurts, but you don’t have to accept it, because it’ll not always be the case.  You just take your medication and rest and bide the time until you’re healed.

To accept chronic pain, you have to realize that “this really hurts” is not going away.  Pain has become part of every aspect of my life.  I’m always going to hurt to a lesser or greater degree.  “It is what it is” and “that’s the nature of this beast” have become well-known statements to those around me.  Once you’ve accepted chronic pain (not to say given up hope – there is always hope), there’s one major choice to make:

Do I climb under my rock and suffer, or do I consciously decide to live a full life in SPITE of the pain?  It’ll be a different life than the one I was living, and vastly different than the life I imagined I would lead – but it can and will be a full life.

If everything I do hurts, and my endurance is limited, then I must choose what’s most important and do that.  I always ask myself, “Is this going to be worth the price I’ll pay (in exacerbated pain and exhaustion)?”  You’d be surprised how much life clutter gets removed with that 1 question.  There are some days that I do have to stay home and rest.  Everyone needs time to recharge.

I’m trying to appreciate the gift I have been given – NOT the pain – but the ability to grow in unforeseen directions, learn what the true “good things in life” are, and appreciate them.  Stay in the light of positive thoughts, and out of the darkness of despair and negativity.

And believe me – some of my days are dark indeed…

This is a constant process for me – 2 steps forward and 1 back – but it’s the process that will help me grow and, one day, use this affliction in a positive manner to help someone else.  Even if the only someone else I help is the new me.

Thanks so much to Rosemary for sharing her thoughts.  Thanks to Slaup for the photo from Flickr.  Grand Rounds is published this week at the Health Business Blog.

Sharing how you’re doing and getting feedback can be very helpful to make progress with your new habit.  Today and next Monday, we’ll look at how readers are doing with changing their habits.

RP writes:

Well, I deal with my pain by first drinking alcohol and crying hysterically alone, while I’m lost in the life that I can’t escape.  I have terror-filled moments when I try to begin to figure out what it means to face pain.

Then I start trying to find the sunshine in my days, even when I’m being surrounded by utter pain inside and out.  I’m choosing to fill my wounded, empty cup with happiness I believe dwells inside me.  I try to discover the soul that is me – which breathes and feels and has been there this whole entire time.

RP is having a challenging time dealing with pain, and is searching for ways to “face the pain,” ways to cope.  She is in both the preparation and action stages of coping with pain.  That is, she is deciding what techniques to use to cope with pain, and is trying some of them.

What might help?

In the preparation stage, you develop a plan to use new coping skills, figure out what might get in the way, and how to best set things up to be successful with changing your habit.

RP might consider writing down a specific plan to ”find the sunshine.”  What does this mean, exactly?  What are some ways to do this?  What will get in the way of doing this everyday?

In the action stage, you put into place your plan for changing a habit and then jump in to your new behavior.  Some things will work well and some won’t.  It’s a time to get lots of experience with how things go, so you can fine-tune your habit-change plan.

So how is “finding the sunshine” going?  When does it go well, and when is it hard to do?  RP is trying some new approaches, which I would describe as focusing on the positive and adding positive activities, as well as rediscovering who she is, in addition to having pain.

These are great approaches.  What might not work so well:

• multiple ideas are a lot to focus on at once
• RP’s plans are general, rather than specific
• it’s not clear if RP actually did the preparation stage; if you don’t, you miss out on the opportunity to develop a plan for how you’ll implement your habit change

Suggestions for RP:

• choose 1 new way to “find the sunshine”
• write down specifically when and how she’ll do it
• what might get in the way, and how will you address that
• write down specifically how it will fit with her goals

So it might look like this:

New Habit:  Add 1 positive activity to my day, each day.

How I’ll do this:  At the beginning of each week, I’ll write down 1 activity on my calendar that I’ll do each day.  I’ll also write down the time of day that I’ll do it.

What might get in the way?  I may not have any ideas.

How would I handle that?  I can use some lists on the internet to get ideas (funny movies, fun enjoyments) or I can ask a friend.

How does this help me reach a goal?  Pain is making me sad, and I want to be happier.

By writing it down, you make a commitment to do it.  By including a specific time to do an activity, you make success more likely.  You look at what might get in the way, and figure out how to deal with that, so it’s easier to stay on track.

Although RP is also coping in ways that aren’t positive – drinking, being alone - don’t tackle trying to change everything at once.  One step at a time, and things can improve!

What suggestions do you have for RP?

Other articles in this series:

• How to change a habit, part 1
• How to change a habit, part 2
• Breathing exercises, part 1
• Relaxation exercise, part 1
• Breathing exercises, part 2
• Habit-helper websites
• How are you doing with your new habit?
• Try 1/2 a habit
• Visualization
• Feedback on changing habits, part 1
• Feedback on changing habits, part 2
• Guided imagery, part 1
• Guided imagery, part 2
• Stress management, part 1
• Stress management, part 2

On Wednesday, we wrote about research showing that music helps in pain relief.  Today, you can try this for yourself.  Here’s a 3 minute video – does it provide you a bit of pain relief?

Thanks to Killereysa for the video!

Patients with significant burns suffer from pain as a result of tissue damage, as well as subsequent treatment such as bandage changes, physical therapy and skin graft surgeries.  A recent study looked to see if music helps decrease pain.

Based in South Korea, researchers studied 6 patients who were inpatients at a hospital specializing in burn injuries.  Patients participated in ten 30-minute sessions.  When patients were asked about their pain levels, significant decreases occured in those patients who participated in the music program.

Although a very small study, this research supports music therapy as an adjunctive treatment for pain.  Does music work for you?

Tune in Friday for a music relaxation exercise!

The study is:  The effects of therapeutic music listening on the pain relief for the patients with burn, in Burns 2009, Vol 35, Supplement 1, Page S31.

Grand Rounds is published this week at Dr. Anonymous.

Each Monday this series of articles will feature pain management techniques to help you decrease and cope with pain.  It’s your at-home pain management class!

Today’s exercise is visualization.  Visualization is simply using a picture or image to help you relax.  Both relaxation and visualization reduce pain by helping you relax.  An image that may people enjoy is the beach, but you can use any place or thing that you love.

(And as you’re reading this post today, click here for sounds of the ocean to accompany your reading!)

Visualization exercise

There are several ways to use this exercise:

• read through the exercise and then do it from memory (it doesn’t have to be done exactly as I’ve written it)
• tape record the exercise yourself, then play it back and listen
• have someone else read or record the exercise for you

When you picture your image, use as many of your senses as possible with visualization – what you hear, smell, see, feel, etc.  Some people find one favorite relaxation exercise and do just that one, while others like to vary the ones they use.  Either way is fine.

Your assignment:  Do a visualization exercise at least once a day.

Other articles in this series:

• How to change a habit, part 1
• How to change a habit, part 2
• Breathing exercises, part 1
• Relaxation exercise, part 1
• Breathing exercises, part 2
• Habit-helper websites
• How are you doing with your new habit?
• Try 1/2 a habit
• Visualization
• Feedback on changing habits, part 1
• Feedback on changing habits, part 2
• Guided imagery, part 1
• Guided imagery, part 2
• Stress management, part 1
• Stress management, part 2

Thanks to Adwriter for the photo from Flickr.

I was walking to work last week and passed a home that had a “for sale” sign out front.  The realtor was Prudential, but guess how I read it?

Pudendal.  (That’s a nerve that goes through the pelvic region that can cause pelvic pain disorders.)

Yikes!  Too much pain on my brain?

Let me know how your new habit is going here.

Welcome to the February Pain-Blog Carnival, a selection of great writing related to pain from this past month.  I hope you enjoy the selections!

Two new blogs to share…

Stress Relief Workshop has loads of tips on stress relief.

The Health Matters Show offers podcasts about health topics, especially related to Fibromyalgia and Chronic Fatigue.

Living Your Best Possible Life writes about being upset and scared when faced with illness.

Chronic Babe is now offering podcasts!  Check out the great info.

CRPS RSD A Better Life looks at immune therapy for CRPS (RSD).

Psychology of Pain shares a NY Times article on what migraine sufferers go through.

Nickie’s Nook reviews an iPod application called iCounselor – now we just need iPsychiatrist so I can retire!

Rest Ministries answers the question, “My parents don’t believe I’m sick – what should I do?”

In Sickness and In Health discusses the importance of caring for the caregivers, in addition to those who are sick.

The Migraine Girl relates her experiences with mindfulness meditation.

Next month’s carnival will be on Wednesday, March 31.  If you have a pain-related blog you’d like me to consider including in next month’s carnival, let me know here.

Grand Rounds, a weekly medical-blog carnival, is published this week at MD Whistleblower.

Each Monday this series of articles will feature pain management techniques to help you decrease and cope with pain.  It’s your at-home pain management class!

In this series, we’ve been looking at using pain management skills regularly.  Some of you may be doing great – practicing pain management techniques daily and getting benefits.  However, some of you may be having more difficulty with this change in behavior.

Changing a habit is hard!

Especially if you’re doing more than tweaking something.  Changing something completely takes concerted effort, and, more often than not, fits and starts until it comes together.

An intriguing suggestion comes from Haider Al-Mosawi of Personal Growth Map.  He writes that committing to a new habit doesn’t need to be a decision between zero commitment and 100% commitment.  You can try 1/2 habits.

What does that mean?

Rather than commiting fully to a new habit, you simply take a step in its direction.

Why is this better?  Your focus then turns to the progress that you’re making instead of the times you don’t succeed.

Here’s Haider’s article:  2 Simple Ways to Form New Habits Without Really Trying

Other articles in this series:

• How to change a habit, part 1
• How to change a habit, part 2
• Breathing exercises, part 1
• Relaxation exercise, part 1
• Breathing exercises, part 2
• Habit-helper websites
• How are you doing with your new habit?
• Try 1/2 a habit
• Visualization
• Feedback on changing habits, part 1
• Feedback on changing habits, part 2
• Guided imagery, part 1
• Guided imagery, part 2
• Stress management, part 1
• Stress management, part 2

One of the challenges when you have chronic pain is to keep doing things.  Often you have to modify activities, or find new ones, but the important point is to keep active.

But what if you’re in a wheelchair?

Yes, even then!

Zibin Guo, PhD, presented a demonstration of t’ai chi with people in wheelchairs at the International Paralympics.  He stated, “since the movements in wheelchair t’ai chi are slow, circular, and require the use of the lower back, they can provide important health benefits to people with otherwise sedentary lifestyles.”

It’s all about modifying what you need to in order to keep going.  What do you do to continue to be active despite pain?

More info about modified t’ai chi here.