I've Never Met a Couch Potato with RA

Recently at a session of an Arthritis Society course called "Living With Rheumatoid Arthritis" I heard an amazing statement. The physiotherapist who led the session said that in 20 years of seeing RA patients she hadn't ever met a Couch Potato with RA and went on to say that many of us with rheumatoid disease are type A personalities.

Couch potato and an 'A' type RA hero

She was saying that the beliefs we grew up with, such as "if you feel sick don't give in to it" and "you can do anything you set your mind to" may need to be changed when you develop a chronic illness. Feelings that make you "soldier on" and "push yourself through the pain" may help you get ahead when you're healthy but once you are ill, you need to listen to your body and take good care of yourself so that your health does not get worse.

This extra care for yourself can make you feel guilty and lazy when your body calls for rest. This is when you call on your communications skills and ask for help and understanding. The course leader also suggested a strategy for coping with worry. You save it up all week and worry from 7:00 pm to 8:00 pm every Wednesday night.

It's not easy to worry for an hour straight.

Another strategy for dealing with what you've lost is to do an assessment of your skills with the idea of finding which are transferable to the new self that you will have to create. The self which you reinvent based on your new reality can be very different from the old, but the bedrock is the same.

Here's a link to a book "Positive Coping With Health Conditions" which you can read online as HTML or download as a 42MB PDF. It helps you to learn more about living better. It's a long journey with changes and losses along your road. Remember, stress management is a life skill that you can learn.

One of the adjustments you can make is to put yourself in the center of your life.  Another is giving yourself permission to be good to yourself. Guilt and worry make that hard, but remember our course leader. "I never met a couch potato with RA."

To read more from #RDBlogWeek...

*pictures copyright amckinnon

Happiness in the Real World

Chronic health problems have a major impact on your life.  One part of the answer to doing well lies in the way that you deal with stress. How you cope with stress can be beneficial or can worsen your problems.

The logical next question is how do people do to deal with stress in a beneficial way?  I suggest you look at the resources you have available to you and make an inventory if you are a list maker.  Some resources may be social support, your personal sense of your own worth, money, health literacy, skills that you have.  Any additional suggestions are welcome.

My neighbour's allium

It's easy to see how money helps.  You can obtain labor saving devices, pay people to help with some tasks, upgrade your diet.  Anything to reduce stress is a plus.

Your social support is one of the most crucial. Not every part of your life contains supportive people.  The workplace can be a way to affirm your value and receive comfort or it can be a place of dread where your so-called friends and long term work mates are trying to trip you up or push you down.  For many the church and their faith is a wonderful source of help.  In the family area chronic illness can break up a realtionship.  I have heard of a lot of family rifts that come from relatives not believing that you have real issues.  The pain that is caused by this is hard to deal with, especially considering that you are ACTUALLY sick and your life has already become a balancing act.

Don't underestimate the value of your health literacy.  Many studies have shown that it is the most important factor in predicting health results.

So if you are not coping well what do you do to improve your ability to be resiliant and bounce back to at least a shadow of your former self?  How do you cope with pain, medications, numerous doctor appointments, and the feelings of guilt that you have for "letting people down" because you can no longer fill all of the roles that you could before?

One place that you can find suppport is by talking to people who have similar problems to yours and these  days it is very easy to find them online, especially if you have a rare or less common disease.  I have been a member of a traditional online group for 14 years now and I get a lot of support and encouragement from the other members.

Lately I have been enjoying Twitter.  Depending on who you follow and interact with and how much you participate it is easy to find like minded and supportive people.

I suggest trying to balance positive and negative thoughts and this is a good post from Auntie Stress with the good cheer pointers.
http://rheumfuloftips.wordpress.com/2012/09/16/363-how-to-be-well/  It is worth repeating.

You can make your own social community online and it can help counteract the negative voices.  And don't forget the healing powers of pets!

My camera case. Even an artist's rendition of a pet can cheer you.

Practicing anything can improve results, even your optimism.

Here is an odd coping mechanism which just goes to show that anything can be effective.  It depends on the person.  When I was diagnosed I was very fatigued and had little energy.  Going out in the sun was not advised. So I started entering the contests I found at grocery stores and on products.  Luckily for me in a few weeks I got a letter saying I had won "something".  That was so encouraging that I kept on entering until I found out (It was a pair of skates).  By that time I was getting more good letters.  That was the hobby that saw me through some sad times.  I was always optimistic waiting for the mail and phone calls.

My next post will be a contest story featuring a large animal (and no it will not be Snowball, the life size plush polar bear that my mother in law loved).  It was a bright spot in my early RA experience.