Wednesday, July 11, 2012



I'm happy to report that I'm up and running again after my splat-up-against-the-wall crash a few days ago. Thanks to everyone who send encouraging thoughts and messages my way.

Amy asked a great question in regards to my plant-my-big-ol'-fanny-on-the-couch experience:

"This is the perfect analogy for how it feels. We all have a little Lulu in us and we want to just run FREE.
     Other than couch sitting what is your routine to pull out of a crash? What works best for you? Am I the silly one that wishes that there was some magic pill to take to lesson the symptoms?"
First of all, Amy -- I'm really, really sorry to break the news to you, but yes, you are silly, honey. And THAT'S OK. We love you just. the. way. you. are. Yes, we do.

It's not because you wish that there were a magic pill to lesson the symptoms. Goodness. We ALL feel that way. If that were the case, silliness would be one of the diagnostic criteria for Sjogren's syndrome. Actually, maybe it should Let's not go there today......

No, you're silly because you indulge me in my BICJ and Pinky and Goldie imaginings. John really doesn't like anyone to encourage me in that type of um.....alternative thinking.

(But Pinky says Hi and he's glad that someone out there cares about his furry pink carcass.)

Amy loves me. I just know it. 

Well, then. Let's move along to Amy's very non-silly question, which is, "Other than couch sitting, what is your routine to pull out of a crash?"

Excellent question. I wish I had an excellent answer.

I guess my strategy for crash recovery basically could be summed up this way: I rest. Then I test.

There's no substitute for serious down time when I'm crashing, meaning that sometimes even lying on the couch watching television is too much activity and stimulation. When I know that I have completely and totally exhausted my reserves, the best thing that I can do is to put myself to bed in a darkened, cool, quiet room. Sans schnauzers. If there's noise outdoors that makes it's way into my room, I put in ear plugs.


I try to minimize any and all stimulus to which my body would feel a need to react. Noise, for me, seems to sap my energy while I'm crashing. I turn off the phone, put away my computer, turn off the television, cancel unnecessary appointments, pull the shades, and just turn my focus inwards. Some people would describe that as meditation, and I suppose to some extent it is. Mostly, it's a very deliberate effort to distance myself from any and everything, which usually results in several hours of sleep. But even if sleep is elusive, I try to just lie still, focus on my breath, and imagine every cell in my body recharging.


At some point after the rest phase, I find it necessary to test to see how much I have replenished my reserves. Early on in my disease, it was so easy to just cave completely to what seemed to be an overwhelming need to camp out in bed for days. Who knows? Maybe I really did need those days and days of rest. Actually, immediately after I quit working, I KNOW that I did.

But overall, I realize that simply remaining horizontal can be somewhat detrimental, too. So, I try to make some kind of effort to get my body moving again, while also trying to evaluate my response. If I seem to be tolerating activity well, then, great! If I don't, and my crashy symptoms return, then I head back to bed.

It's a tricky balancing exercise: rest vs. activity. Isn't it strange that exercise in certain circumstances can lead to a crash, but also can be energizing afterwards? Go fig.

During a true crash, I try to avoid using any stimulants such as caffeine or Provigil to artificially prop up my reserves. To actually make a recovery from a crash, I need to focus on rest in a serious way, and stimulants just seem to complicate matters and actually result in a further depletion of my energy stores.

Rest.....then test.....then rest.....then test......

What do YOU do to get yourself going after a crash?


Michelle said...

Because I had a two level cervical fusion two months ago I had to stop taking my Plaquinel, and Celebrex. I won't fuse while on either of them. I'm waiting for the huge crash and burn, but other than a little extra dryness, so far so good.

Thanks for the tips!

Connie said...

Hi Julia- Luckily, my symptoms are still quite mild compared to others. What I find most frustrating right now is not knowing what will make me feel better or worse. Walking the dogs in the morning tends to loosen up my knees while kneeling and getting up and down in the garden to weed can make my knees ache( but not every time). I find that I'm in the phase of thinking I can't do something then do it anyway and am usually OK but then something silly like driving in traffic for a couple of hours wipes me out. Geez, is their any predictability to this?

Amy Junod said...

I do love Pinky. I'm happy to see that he's still hangin' around on the front porch. (No doubt he just flips his beak up these days at passers by as if to say, "Sup?" Diva.

I'm glad that you mentioned the sound thing because that's a big one for me too. With the boys home for summer I'm irritated with all sounds. I usually plug in my ear pods because listening to guided meditations really help me.

Something that has started helping me might sound simple but it's worked. Regardless of how I feel I make my bed. Even if I feel like I'm just going to retreat back to it I make it. If it's a nap then I'll curl up on top. During a flare there is something comforting about pulling back the covers and crawling back into bed. I think it sends a powerful message to my body that I'm taking care of it.

I'm always feeling like I'm playing catch up to new Sjogren's symptoms.
Like Connie the unpredictable part is cruel. I might print and tape a pic of that cute dog leash to remind myself it'll be ok. HONK! GAG! WHEEZ! HONK! (how we sound when our collars are yanked)

Glad you're feeling better!

Omgrrrl said...

UGH! My Sjojie mom doesn't rest and test. She runs and runs out. Over and over. Any thoughts/resources for that?

ShEiLa said...

I read this post yesterday... but didn't have the strength to comment. My pain levels are outta control. On top of my Sjogren's tired... I am worn out from pain.

I conducted a 'drug' experiment yesterday. Took myself off of Voltaren (cause it didn't seem to be working) switched over to my old friend Ibuprofen 800... only to realize the Voltaren works better. Crap I have been in a world of hurt.

I must be having one heck of a flare. Seeing my primary doc on Tuesday and because my Rheumy is 600 miles away... the can consult via telephone. Oh dear.

It is comforting knowing I am not alone.