This is something that gets passed around communities of folks with rare/chronic diseases. It’s well worth the read, since most of us will cross paths with someone with a chronic illness at some point. I can’t think of a better analogy. Click on the link that says “click here to read The Spoon Theory”. It’s a PDF, and… I’m not that tech savvy.

So it appears yours truly may have crossed paths with a certain infamous virus. I’m not sure if it’s the chronic pain/chronic illness or if it’s just the most hideous virus known to man, but wow, I’ve never met a level of pain that sent me running to the emergency room, but after 8 hours waiting for Killsya Permanently to call me back and prescribe tamiflu, and hopefully something, ANYTHING (that works) for the pain, since max doses of tylenol and motrin were lasting 30 minutes tops…. I had met my match, and spent enough hours sleeping (which is all I was capable of) in 30 minute stretches, moaning all the while.

It wasn’t just the pain, once I hit the threshold of every single “if you have this symptom, you might want to go to the ED” combined with pain that would make birthing quadruplets naturally, simultaneously (yes, REALLY) seem like a pleasant way to spend an afternoon….Thankfully 2 doses of Tamiflu on board, and a couple of doses of various pain meds, I got the pain back under control to the point where my usual self care is enough. Battling a migraine from being kept off my HCTZ, but that will resolve once the HCTZ is working again. Meanwhile dark rooms and Well-Patch are my best friends.

Now if anyone has a remedy other than antibiotics, salt water gargles, and citrus that can make tonsils like these look like these, I’d be grateful.

This interesting article, blog fodder in it’s own right, had me ranting. Americans are an unhealthy bunch. We don’t sleep, we don’t exercise, we don’t eat well, and we don’t have much down time. We drug ourselves to wake up, to go to sleep, to relax. No wonder we’re sicker than anyone else.

Whether it’s the addictions we have that get us through, the cortisol surging through our stressed-out veins, or the endless stream of processed crap we eat, we are a walking, talking bundle of inflammation.

I find it interesting that so many of these countries that beat us in health care outcomes also have a more sane approach to life and work and leisure.

I know, I know, here we go with the “why should I pay….”.

Save it for someone who gives a damn. If you want to be penny-wise and pound-dead, that’s you’re right. Me, I’m interested in finding out what works, because what we’re doing to ourselves? Ain’t it.

I awoke Friday morning, retreated to my recliner with it’s comforting heat and massage as is my ritual, to find this article waiting to fill my world with sunshine.

Six hours later I was on a train with my eldest son bound for Washington D.C., with visions of pot-stirring dancing in my head.

Turns out you can’t really do any of that in our Nation’s Capital anymore.

Huh.

Thanks to Organizing for America I managed to connect with some wonderful and highly motivated individuals kicking insurance reform rear. Not sure I did anything terribly noteworthy, certainly not anything I couldn’t have done at home. But I felt strongly that I needed to be here in the middle of things to make a difference.

I’ll be heading home soon, not nearly as triumphant as when I arrived, but sure in the knowledge that however ill-advised my trip may have been, I’ve lived my ethics to the best of my abilities, and can lay my head on the pillow each night with a clear conscience.

Today I’m taking a break from my efforts, and also trying to recover a bit. In reading some of my fellow chronic disease bloggers, I came across this post which hit home for me, since the rage and fury only blocks the awareness of pain for so long, particularly when one (who should know better) takes advantage of that false sense of security by pushing themselves too far. Particularly when one filled with all that sturm und drang leaves behind their pain medication.

Oops.

This is perhaps the cruelest aspect of chronic disease/chronic pain.

People see what you do, not what you can’t do, since that is mostly an internal struggle. So they see that you shop for groceries, or clothes, or go to church, or volunteer, and they don’t have any real understanding of the other side of that coin, the days, weeks, months you are incapacitated, the activities already banished from your calendar forever, the people you’ve let down, those who couldn’t handle the price to be paid for chronic disease. After all, who can blame them? If I could leave this all behind, I would too. It’s a luxury I don’t have, so I have all the more compassion for those who can, and do. Nobody would chose this.

Even your closest loved ones, when they’re feeling tired, put upon, and weary will forget the cost to pushing yourself too far. Chronic disease is really pushing the envelope on the old “in sickness and in health” meter.

For that matter, my little junket here proves I myself can delude my way into thinking I can still contribute just like the rest of the world. As Randy Pausch reportedly said, even the injured lion still wants to roar.

Which is not to say I don’t have something to add, some way to be effective, but it’s important to remember, I can’t do it the way I used to. This is both a cause for consternation, but also an opportunity, a chance to learn new ways of giving back.

I wish, for the sake of our loved ones if not for ourselves that society could be a bit more supportive and accepting of the needs of people with chronic diseases. I’m just not sure how we can make that happen here, in this country of sprinters. We’re a culture of hares, and those of us with chronic diseases are like the proverbial tortoise, with an arthritic leg that acts up on humid days.

I look around my community of fighters, and see such impressive courage, strength, gumption…. I wonder what we miss by not working harder to bring these people into the mainstream of American life.

I suppose I’ll have plenty of time to contemplate on the long ride home.

I like making lists of self care things that work. In part because when I need them, my brain is usually not capable of recalling them, in part because I want them available when others are in need.

So perhaps a small break from the agitating and soap box standing, and a little something inspiring to share.

Wandering the magazine section of Big Box Bookstore yesterday, looking for inspiration and information on how to not fail miserably at being a Mom to school aged kids, I came across this magazine called Artful Blogger.

Of course it piqued my interest, since I’m not artful, and I’m most assuredly a neophyte blogger.

I read this fantastic article, and a portion of a blog post that really hit home for me. I have this raging perfectionist streak, and with the cognitive issues, I’m even more stubborn than usual (which is saying something).

It’s a principle in theory I live by, but in practice…. sometimes I stumble a bit. I’m eternally grateful for the reminder, so artfully written.

It’s the entry for Feb. 18th. Go read it. It’s well worth the time.