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Thursday, 24 September 2015

Five Tips For Dealing With Chronic Disease



1. RA helped me to develop a sense of optimism

When my health changed for the worse I became depressed about pain and fatigue, and was even more stressed and unhappy when I got a diagnosis of Rheumatoid Arthritis (RA).  I remember clearly that it was summer, and I was told to stay out of the sun because of my medication.

For some reason, my mind went back to my mother - she used to enter contests at one point when we were kids. I thought I'd try this home made solution! I started to enter and once I got started it was great to be looking forward to exciting calls, messages and letters. Gradually that positive feeling occurred more often.

I wish I could uncover the secret of being this happy

2. You need to be able to find things out and put things together.

When you suddenly find yourself with a health problem you have barely heard of, it is worth learning at least the basics about the illness and treatments. In the case of RA the process of getting effective care was too slow for me. If I had known more about the medications I would not have had to weigh the options and start a new treatment months later when I saw the doctor again. Being ready would have helped me to feel better sooner. Knowledge affects your outcomes.


Picture taken at Paul B. Helliwell Patient & Family Library at Toronto Western Hospital. You need to have your organs together



3. You need help

Hopefully not this level of help

Your primary care doctor is the person you see most often. Do the best you can to find someone who will work with you. With a chronic disease you can learn a lot and get help from other types of health professionals too.

With RA I really value the help of the rest of the team I have put together over the years - an Orthotist to make the orthotics that keep me from limping, an Occupational Therapist to tell me how to save my joints and find devices and ways to make life easier and a Physiotherapist to oversee the physical areas that the rheumatologist never seems to mention.  In fact my physio cheered me on for years as I struggled with disatisfaction. It really helps when someone keeps saying "You're doing great."


4. You have to be persistent to get good treatment


I always hope for a great treatment that will work fast - like a bolt of lightning

Good treatment is not likely to find you. You have to search it out. If your first  doctor is wonderful, fine, but RA lasts a lifetime, so it's best to find a specialist you can trust, and also one who has up-to-date knowledge of treatments. Even if you want more conservative treatment at least the best doctors know which of the milder drugs are most likely to improve your health.


An example of persistence. My Doctor has to fill out this many forms to get people on a biologic drug.


5. You need support

They are holding each other up

Your family and friends (some of them anyway) will be good sources of help and support for you during your ups and downs with RA, but I'd say there's no substitute for a support group. At first I was unable to find an in-person group; now I have discovered one through volunteering for arthritis related causes.

My support group of choice is online. I've been in the same one for 15 years and we have grown very close. When you're worried and don't want to make your friends and family even more anxious the best people to talk to are others who have been through it before. They are invaluable to help you get through tough times.

On Twitter you can find people with RA using #rheum as a hashtag, or you can go beyond just talking to others who match your illness and try to make help others and change things that are wrong or less than perfect in health care. Helping others is one of the best ways for people with chronic disease to start going beyond their illness. Do you know the real secret of the self management courses you see?  It's in just deciding to take it - that's a first step.

Once you join they teach you how to set goals that will work for you. Even if you decide not to set a goal some weeks it still does you good because you are deciding what you want to do, not your disease. So there is my theory of self-management!


5 comments:

  1. Annette: what an amazing post. Wow, the use of media to express the point is perfect and each point had a great picture. I am blown away. Wow. Perfect is all I can say.

    rick

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  2. Thanks Rick, I really appreciate the comment. I have a box of toys and props under my desk so I still have a chance to play. Hanging on to the old Lego and Dinky cars. You just never know when you'll need them.

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  3. Your smile always lights up the room! Looking forward to seeing you tomorrow at the SS Support Group.

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  4. Thanks Cristina. Sorry I missed the group. I was scheduled for a day long Citizen Panel today, so could not attend. It's always so good to see you all, and I still learn so much from others with Sjogren's

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