Carrying on

In all the years I’ve had rheumatoid arthritis, I’ve never been able to get anyone keep calmto understand just how thoroughly the pain from the disease affects my life.

Sure, I’ve told my family and a few close friends about my flares, large and small. They know my history—the decade I spent nearly crippled and the one following, during which I enjoyed a long, near-complete, inexplicable but relieved remission. They know that the pain is back, too, and that while it’s frequent, it’s comparatively mild. Mostly.

But they don’t, of course, know my mind. They don’t know—or rather, they don’t comprehend—that the pain is always. Terrible or mild, it never really goes away. Even in the rare moments when the pain does actually disappear, there’s always that niggling question: when will it be back, and how bad will it be when it hits?

With rheuma, one is always in the various stages of girding one’s loins for the next skirmish, aware that it may quickly become a full-fledged battle. And while I’ve never lost a battle against RA, I’ve never entirely won, either. More often than not the rheuma-dragon and I limp, exhausted, to our opposite corners to take stock and rest up for the next fight.

And that long remission? Wasn’t that a win? Oddly, to me, it wasn’t. The dragon simply went into hibernation. He wasn’t gone. For about six years I got to live, pain-free, on borrowed time. But I knew down inside that he’d be back one day. He wasn’t done with me.

No one in my family is aware of how I perceive this disease. What I just wrote above would probably surprise them, even if only for a short time.  I don’t blame them for their lack of deep concern; after all, the Wren they see day-to-day is the Wren who’s coping with the pain quietly and getting on with things. You know: Keep Calm and Carry On.  (I’ve adopted the words from that famous British poster as my RA mantra.) Since my pain is (knock wood) rarely disabling these days, my family’s reaction to me and my RA is normal and acceptable.

And now I come to the point of this post. It’s hard for me to describe how glad I am to have found all of you, my fellow rheuma-fighters. It is such a comfort to read your posts and comments and realize that you get it, that you know the pain I’m writing about intimately, that you understand how embarrassing and even demoralizing it is to have to ask for help opening the jam-jar or, in bad moments, cutting up your meat.

You understand how the rheumatologist becomes the Rheumatologist, almost the most important person in your life, save significant others, and sometimes he eclipses even them. You get the resigned acceptance that comes with knowing He will not see you again for three months, and that feeling of hope, laced with despair, that comes with starting a new treatment. You understand the frustration of knowing that the new drug probably won’t show any results—except unpleasant side effects—for at least six weeks, and probably a lot longer, even as you hope against hope that maybe you’ll be the exception to the rule. Maybe by this time next week your pain will be gone and the disease under control.

And oh, your empathy. It radiates through the ozone from your supportive, encouraging, often humorous blog posts and comments. How do we do that? Where does that humor come from? Here we are, hurting and sometimes disabled (often permanently) yet we find the humor in the situation and share it with our fellow rheuma-fighters, hoping to buck them up a little, knowing how much it helps. What is that?

Grace?

I ‘m so glad I decided that day, about three years ago, to search “rheumatoid arthritis blogs” on Google. I never expected to find so many—and not just the blogs, but the living, breathing, people-just-like-me who write them. I count you as my friends, now. My fellow-travelers.

Thanks for being there for me. I’m doing my best to reciprocate.

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14 responses to “Carrying on

  1. Oh Wren – that’s really moving. Now i feel almost guilty (but only almost) about posting my extremely frivolous post just now – but then again, I hope it’ll make you laugh and cheer you up a bit.

  2. Wren, I am so sorry the pain is back strong. Please know that we are all here for you to share your thoughts and feelings. Your comments have brought a smile to me more times than I can count. It is nice to have others that understand. Sending warm thoughts for you today and everyday.

  3. Wren, I can’t imagine how distressing it must’ve been for you to have a 6 year remission and then have it come back. I tend to have 6 months to a year ‘gaps’ between flares and every single time I think ‘maybe this time it’s REALLY gone!’. The human heart is so foolish and so desperate for hope! Nobody but the chronically ill can appreciate that precarious feeling of constantly staring over the egde of the abyss wondering when things will start to crumble. Oh well, fight on we must!! Keep strong, we’re here for you.

  4. Wonderful post Wren! Like you I was diagnoised 25+ years ago and it was so lonely not knowing anyone else who had this disease. It wasn’t until a few years ago that I met someone else who had RA. Your blog and the others I read remind me that I’m not alone and that there is always hope and humor to be found.

  5. Wren, even though we haven’t met in person, I feel a strong kinship with all of the RA bloggers out there. It’s comforting to know that you’re not alone in this ongoing battle. Thanks for your clear writing style and for exposing the many sides of the “dragon” as you call it. Through thick and thin, you’ve always been there. Sometimes I dream of a RA blogger convention where we all get together in person.

  6. Like you, Wren, I count and am thankful for the great many friends I’ve discovered through RA blogs — both theirs and mine. It is nice to know there are those who truly “get it”, share your triumphs, and help you carry the stressful times. You’re one of those great friends and I thank you for sharing your journey and wisdom with the rest of us.

  7. Oh Wren, I have been there, having to ask someone to cut my food because I was struggling or open that damned water bottle! Fortunately for me, my rhuemy put me on humira and it really, really worked! I can now actually count the number of joints that are giving me trouble and that trouble is relatively small. I have hope for the coming years that I forestall extenstive damage. I hope it will last a while but, like you, know that this may not last, often is only temporary. I don’t have a blog, but your blog, with it’s beautiful writing has provided me with support and comfort when I desperatly needed it. The community online of RA writers has given me support from those who understood when no one else did. Don’t give up looking for remission and treatment though. Treat to target is the new mantra and you owe it to yourself to try and feel as good as possible within your own parameters whether that’s PT or massage or different meds or accupuncture (I’ve heard that can help but haven’t tried it) – anyway, I guess you get my drift. That last terrible sentence is one reason I don’t have a blog!

  8. I’m relatively new to this game, and still mostly in the shut up, listen and learn ‘taker’ mode…

    So let me give thanks to you all for your generosity. The time and effort you spend to share your experiences and perspectives are amazing. Thank you so much for giving me a community of people who not only get it, but also share the knowledge.

  9. Thank you for this post. I’m glad I am not the only one whose family just doesn’t get it.

  10. This is just the kind of post I wanted to write the other day. You put it much better than I’d have been able to. Thanks for your words and thanks for you!