Wednesday, 3 April 2013

RA Circus - #ChronicLife

In reading a blog yesterday someone was laughing out loud about the Elephant on the Trampoline as an antidote to gloom. Humor is a great way to get temporary relief from almost everything undesirable.

The elephant made me think of the circus of course and those vintage posters I love to look at.  It also makes me think  of this successful strategy that got me through years of gloom after my diagnosis with more optimism and some unexpected bright spots that helped me through some tough years.

I would also say that (insert your disease here) is the "elephant in the room' for many of us. It takes up so much space in our lives that we would rather use another way. 

Getting a diagnosis of inflammatory arthritis is a bit like being shot from a cannon - it's scary and a huge shock coming out of the 

cannon and you can't be sure how the landing will go for you.  The diagnosis may be only the beginning of a different and more difficult phase of your life. Hopefully you will be one of the people who can achieve remission fairly fast.  To do this you need to see a rheumatologist soon after your symptoms appear and ideally you will respond well to medication. This now happens far more frequently than when I was diagnosed decades ago.

People talking about your illness may say "Look at that brave girl and her amazing exploits dealing with a serious illness" (at the best) but it's a lot like trying to tame a wild beast and you never know when it will turn on you.  It's important to keep practicing the measures that keep it under control for you. You can't turn your back on an opponent like this. 

Keep your eyes on the tigers.

As Dr Keystone said in  a lecture a few years ago "RA is a medical emergency" That statement is a call to action. (I will comment that  the lecture was inspiring)

One thing we all do with RA is juggle.  Medical appointments, doctors, family, fatigue, pain, work and worry about the future. That's a serious amount of stress to deal with.  I would like to cultivate a teflon personality so that none of the stress  would stick to me. The flip side would be the velcro personality which sounds like bad idea.

In this article about the brain though there is a statement that the brain is velcro for negative experiences - they stick and good memories are easily forgotten, so we need to work harder to overcome the negative and make more good memories. Some ways to do this are through positive emotions and cultivating the "relaxation response", which includes humor as Kelly Young aka RAWarrior says,.   Auntie Stress has a good post about kindness as another way to lower stress. 

Since this is a circus it's no surprise to see the next act involve great skill and agility. RA is a balancing act and with the feet I have now that is literally true.  I walk very carefully and try to do balance exercise.

With any chronic illness you need to enjoy yourself at least some of the time.  I once had a talk with a social worker from The Arthritis Society and an important piece of advice she gave me was "Have more fun".  Working, housework, social obligations all go better with fun.  My friend finds Doris Day movies enjoyable and she's a Dallas Cowboys fan too.

Over the years so many people in the know, like physios and moderators in Arthritis Self Management courses have suggested that exercise in a warm pool would benefit me.  I believe it but the energy expenditure equation keeps me from doing it.  By energy equation I mean this. The time to put on my bathing suit, dress, drive to the pool, park, undress and shower and then to do all that over again in reverse just does not seem to be worth the effort for only 1/2 hour of exercise.  Maybe if it were this much fun I would do it.

Water Circus

Madame Yucca looks like an amazing woman. I'll never be that strong but I do try to maintain strength by just doing simple isometric (muscle tightening exercise) and I have been doing Arthro-Pilates for years now with Lori Weisbrod (Toronto).  I love exercise that you can do lying down.

The topic of today's blog carnival is how to keep disease from taking over more of your life.  I can see that as a necessity but at this point for me the RA is well integrated and I no longer think of life without it because it is the house guest you can't get rid of.  
Once you have damaged joints, even if the other symptoms are controlled, the mechanical effects of the damage will continue.

When I was working my job was so interesting that I was not thinking much about pain for large periods of time. I used work to keep the RA from taking over even though I had to adapt.  Now that I have retired I find blogging is an enjoyable occupation. Creative outlets are good for the soul, no matter what you produce, from books to baby clothes to beautiful pictures. I totally forgot the RA when I was looking for these circus posters.

This blog post is part of a carnival. Please visit all the posts in the carnival. Here's the topic and a link.

How Do You Keep the Disease from Taking Over?


  1. I too love exercise lying down. I have some yoga exercises like that, but at the moment I can't even risk those due to this pain in my side (which is more like a pain in the neck). If I could resolve this I would be more content with the other pain. I never thought I would say that. :)

  2. I'll have to look at yoga more. My friend Gilly does it to stay flexible.
    I hope you can figure out what that pain comes from. If it were new it could be shingles but I think you said it isn't.

  3. I thought I was failing on Remicade due to extreme fatigue before I had an infusion and felt great until the next time I went to pool therapy. We figured out that I was working too hard in the warm pool, and wearing myself out to the point of exhaustion. I never recovered because I was going twice a week but when I missed a day for my infusion I felt great until 5 days later when I went back to the pool. The lesson learned is that even if the infusions do make me feel better I still have a chronic illness and need to start my exercise routine more slowly.

  4. It's good you found out about the exercise connection before you gave up on the Remicade. Building up slowly should work for you I hope.
    I waited too long to sign up for warm water exercise and the pool closed down last year.

  5. Love this! Way to build around the circus theme and the vintage poster pictures are awesome! So many good thoughts. Thanks for sharing.

  6. Thanks Eric, I was determined to get the posters into a post but it took time to figure out. Finally fit in with Kelly's topic.
    I liked your post. Very much from the heart

  7. Thanks so much, Anet. Great post : )

  8. GREAT POST ANNETTE.... My hands could be one of the attractions in the sideshows. You to the bearded lady, Lonnie and Donnie, Lizard Man....Tree Limbed Lady. lol

    Love the circus theme. It seems like that alot to me too.

    Good Job!!


  9. I found a great poster of Rubber Man but I went for light hearted mainstream circus posters. I love those old posters, especially Madame Yucca. She was a real trailblazer. Imagine doing feats of strength dressed in all of those clothes.

    Thanks so much for the compliment. I'm glad you liked it. Tree limbed lady! I have to look for her

  10. Great post Annette, I really liked the posters and the circus theme too! I do find when I get really immersed in something that I love doing that the pain fades to some degree, I guess we get so engrossed in the 'book', the 'film' or the job in hand that our brains aren't totally focussed on the pain. Time to dig out my Doris Day films again I feel!!

    1. The circus poster was a lot of fun to do. The hardest part was the RA linkage but as you say, it's being engrossed that makes you forget "real life"

  11. What a great post Annette! I loved the circus theme, (thank goodness there were no clowns.) We won't go into my strange fear of clowns :) Back to the topic! I have found therapy in the pool exhausting as well, my body is strange part responds to heat, part responds to ice. I might have to explore this Arthro-Pilates you mentioned. Any exercise I can do laying down sounds about right to me!
    Have a great weekend!

    Life with RA is a Pain

  12. Thanks Lorna, I am glad you liked it. Hard to get feedback from my healthy husband.
    The clowns just did not look appealing, and neither did the freaks really. Lori from Arthro-Pilates is looking at making a DVD so then she can spread herself around. It certainly worked for her - she's in great shape and has a lot of stamina.
    So far at my best I was as good as a moderate level healthy person, but have backslid since then.

  13. Thank you for visiting my site. I really enjoyed this post, great analogies! Having RA is indeed a balancing act at times! All the best to you :)

  14. I like the way your site looks and enjoyed today's post.
    With the blog I take pictures of odd things. Just got an empty rheumatology waiting room today. Yesterday a cake for Sjogren's syndrome. haha

  15. A good read - thanks for sharing your personal journey Annette. I always learn from you...hard to believe all of this as I recall in January I had a hard time keeping up with you as you led me through subway tunnels, city streets and has energy to burn! You are an example of how to tackle life...with a chronic condition. You embrace and use every "spoon" every day!

    Thanks for sharing your expertise and insight. Glad to know you!