Saturday, July 23, 2011

Riding the Roller Coaster

Our own RA Guy made a video a while back of what living through a flare would be if it were a roller coaster.  You can see it here.  While you are there, take time to read through his other posts.  They are incredibly insightful.  I was thinking about that video this morning because I was thinking that every day living with RA is a series of ups and downs.  Sometimes you can have weeks of "good" days- but even our good days have their low points. 

For example; I have accepted that insomnia is just a part of my life.  That's become a flat part of this ride.  I get up in the morning (aka the middle of the night) and I have to use the hand rail to get down the stairs to start the coffee.  It only takes an hour or so before I can go slowly back up- that's an up!  On the flip side, the puppies like to go out first thing.  I put them out but I try, as hard as I can, not to have to go outside.  You see, we have a little cement/rock patio and my feet are so tender in the morning that just stepping on that patio feels like walking on shards of glass. Stepping out there is like zooming back down to the bottom.  The whole day is rather like this.  While I can celebrate the things I *can* do, there's always that little (and not so little) moment where the pain gives me a nudge or the exhaustion sets in that is that reality check.  Up and down all day long.  It's tiring just thinking about it.  I think what tires me out most is knowing that this is a life long pattern.  Oh- I might get more sleep, I might have a REALLY good day here or there but in the back of my mind is always the knowledge that it could change on a dime.  I think that, for me, that is the hardest part, the never knowing when the other shoe will drop and a flare will hit me full force. 

I am not dwelling about this, truly.  I was just thinking this morning after walking back in with the pups and getting cranky about how tender my stupid feet are about that roller coaster video and what a great metaphor it is for life with RA, Fibro, Lupus, really ANY of the chronic illnesses.  So here's what I say.  Let's defy gravity and stay up all day long- to heck with the down part of this ride.  Besides- from the top, we can see out over the world.   


deb aka murphthesurf said...

I like the idea of sitting at the top of the world. I often envision myself on a hot air balloon ride when I want to perch up there....just floating on by looking down and smiling. And I found for those tender feet that slippers are a must. You may want to look into the memory foam type. I found them to be the best ones for me but we are all different. And if that doesn't work then put on some running shoes when you first get up. Yes I know that might seem impossible but your piggies will thank you and you may just be able to stay longer at the top of the coaster for awhile :-)

Pain Free...One Day said...

What drives me crazy (not literally, though sometimes I come close)is the fact that RA is so unpredictable. If I knew that skipping a nap means that later that night my aches & pains would be intensified, then I could live with that because I could prepare my mind for the inevitable. But when I nap and later that evening I am hit with a fiery flare, it can throw me for a loop!

If I liked heights (scared, scared, scared) I would love your suggestion of being at the top of the roller coaster. So I visualize myself standing at the end of an ocean watching the ebb & flow of the waves and find comfort.

Steph R said...

I ran across this article that specifically talks about the depreciated quality of sleep expressed as a co symptom among RA patients in this study. In particular they point out that treatment of the sleep disorder can give direct benefit to the RA severity and that poor sleep quality is linked to greater pain in rheumatoid arthritis patients, suggesting that sleep disruption may lower pain thresholds.
Now the article goes on with a grocery list of drugs that can be used for the symptoms but also says behavioral modifications can be applied like physical therapy. Have you had any success with alternative treatments at all, any thing beneficial besides NSAIDs?

Jules said...

Hi Steph! Thanks for the link to the article. I have done PT- or as my parents like to call it seeing the "Physical Terrorist". :-) I think that I really need to change my routine up a bit. I need to (once these high nineties days end) walk the dogs longer in the evening and get back to walking in the morning. I don't know when I got out of that habit, I think it was when we got the second dog, but adding a little exercise should help a lot. The PT recommended it and I am sure she is right.

Deb- have you received emails from me? I have tried to email you directly from when I get your comments but I don't know if they went through. I really, really appreciate all of your comments and support.

Pain Free- the unpredictability is the hardest thing for me. I crave routine. I was out of one for so long that I like being able to predict what's next and with the RA portion of my life- that's not easy!