We can't manage our chronic disease by ourselves, unless we quickly graduate from medical school and then become specialists. That's not too likely with a new diagnosis that has an impact on your health.
etsy NostalgicLinks
However, to take a guess, even average people don't see doctors much more than two hours over a year. And that may be a high estimate. But even if you spent a whole 24 hours out of your year seeing doctors and other health care professionals, that leaves you with the other 364 days to take care of yourself.
There is one thing I have learned on Twitter. That is that health literacy is the greatest predictor of health. In this context literacy means Grade 8 or better education. I would go further and say that with a chronic disease you need to be able to do even more - you need to learn the medical vocabulary of your disease so that the appointments you have with doctors are as effective as possible. Many of us have likely had the experience of having to wait for the next appointment to decide on a course of action because we needed time to educate ourselves on the choices offered.
TheDecisionTree.com
I have used some formal resources to enable me to manage my RA better. The first thing I did was take a course called The Arthritis Self Management course (ASMP) offered by The Arthritis Society in Canada. It took 3 hours a week for 4 weeks and I ended up feeling more confident that some things I was doing were right and in some areas I could do better. The area that needed most improvement for me had to do with setting achievable goals.
The program that the Arthritis Society offers is based on the Stanford Chronic Disease Self Management Program I was lucky enough to participate in this program also, as an online course. Talking to others with problems of their own and finding solutions as part of a group is very helpful. I found out today that you can take that course free by signing up online for Better Choices,Better Health
In fact much of the experience in these courses can be recreated on Twitter in terms of support, but not with the discipline and the fixed agenda of these workshops. They give you a tool kit to help you progress.
At one course I heard the story of elderly lady who had very little mobility. She built up her stamina by walking around her dining room table and increasing the number of circuits every day. Small steps to success can make a huge difference.
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.
