Tag Archives: Euston Arch’ Guide

“A Blessing, Not a Tragedy”: How Changing Your Perspective on Chronic Pain Opens Your World

Rose Colored Sunglasses

earicicle came out of the closet this week. Not as a gay person — as a chronic pain/CFS survivor.

Who is earicicle? (What a great name, by the way.) This is earicicle — a commenter at DailyKos.  In a touching, extremely inspiring post titled “i lied. earicicle’s confession. And celebration“, she comes clean with her story as a CFS patient for over 20 years.

Then, she writes:

Last October, I read a sentence here at dKos that took my breath away.

I have decided to celebrate this anniversary as a blessing and not a tragedy.

It was from a diary by Iraq War veteran Broken Skull:How an IED got me to vote. (I got blown up 5 years ago today).

I was injured in Mosul, Iraq when an improvised explosive device (IED) sent shrapnel into my brain.  Throughout the last five years, things could have gone one way or the other, from possibly not living through the initial blast to not ever becoming a functioning member of society.  It has been a long tough fight and it has never been easy.  I have fought every step of the way, sometimes fighting myself and loved ones along the way.

Broken Skull’s diary shook me to the core. Because I also remember wondering if I was going to live or die. If I would ever become a functioning member of society again. I remember fighting every day. Fighting for miniscule things that no one ever saw. It sometimes took hours to gather my strength so I could walk ten feet from my bed to the bathroom. Because that was something I was determined to do on my own, even if it meant crawling there on my hands and knees.

I wrote down his simple sentence: “I have decided to celebrate this anniversary as a blessing and not a tragedy.” I looked at it again and again as this 20-year mark loomed.

Broken Skull, you made me DETERMINED to celebrate and not to mourn. Until I read your diary, I think that I had been quietly losing a battle within myself. . . . I survived, when others haven’t.

This is a powerful piece of writing, and I can only encourage everyone to go read it, in full, right now. It got me thinking — as the best writing always will — about my own attitudes towards my illness(es) and, especially here lately, the growing impact on my quality of life, the things I can do, my relationships, my self-esteem.

I have always been a positive person. Annoyingly Pollyanna-ish, some would say. I actually get irritated with the naysayers and the whiners — really irritated. The upside of this character flaw, however, is that for most setbacks, I can count on a very short “downtime” before I’m right back up again, in problem-solving, “cheerfully optimistic because everything always works out” for me mode.

Lately, however, with the worsening of both  of my main conditions — the nerve pain resulting from the spinal curvature, and the fibromyalgia symptoms — I’ve felt myself slipping away from the light into the cold, clammy darkness of fear and the unknown. Gone is my habitual sunny optimism. Instead, I find myself swimming in unknown waters — waters of fear, of hopelessness, of overwhelm, and yes, even of rage and howling indignation.

For the first time in my life, I think, I actually asked the question “Why did this happen to me?” Followed closely by another first — well, since childhood, anyway: “It’s NOT FAIR!”

What I do know, however, is that we choose our thoughts. We may feel as if they’re chosen for us but we know deep down that’s not true. And our feelings are nothing more than our reactions to our chosen thoughts. Change your thinking, change how you’re feeling. It’s not easy, but it is that simple.

So, lately, I’ve had to re-exercise those hope muscles. Those feelings of positivity aren’t coming naturally anymore — they need some help, at least for now. I’m trying to tell myself repeatedly these things:

  • I am alive, and that is something to be wildly grateful for.
  • I will not die from this.
  • I am stronger than this.
  • I am MORE than this.
  • I know how to help myself.
  • Getting well is important. There is nothing MORE important, really.
  • I am doing my best.

Will it work? Will I get my easy, naturally sunny and positive disposition back? Will Pollyanna return, or is she forever banished? I hope she’ll be back. All things being equal, it’s a lot easier to deal with setbacks when you’re not drowning in a sea of hopelessness. But maybe when she does return, she’ll have matured a little bit from the experience. Maybe she’ll have a touch more compassion for those who can’t see the light that she sees.

Welcome to “Euston Arch”!

Welcome! The first inaugural post of a blog should be something besides “Hi, hello out there in blogland, this is my first post.” So, I thought I’d do something a little different — an interview with myself. Hey, why not? I know what questions to ask. Plus, I won’t go all “that’s off the record” on myself, either.

Here we go!

So, Annie, thanks for the interview.

Oh, you’re welcome, Annie. My pleasure. Thanks for the interest.

First things first, I suppose. Why is this site called “Euston Arch”?

Well, Annie, several reasons really. Initially, of course, this site was called “The Tramadol Diaries” – because while I never wanted to take pain medication, when it came down to that (after everything else didn’t work for four long years), those little white pills saved my life.  And it was a little inside joke. See, I wanted this site to have a conversational, slightly confessional tone to it. So the “Diaries” part was a no-brainer. Together, it just sounds funny. Tramadol Diaries. Kinda like “True Confessions” or “Victoria’s Secret.” Maybe not as pretty.

But then Google dissed me. Or rather, my site. Or rather, my site name. It doesn’t like the “T” word. And then my good Doll buddy, Carolie Brekke, suggested “Euston Arch.” It sounds like tramadol. It calls up visions of gorgeous totally-not-Barbie-dolls in wicked awesome clothes doing wicked fun things. And thus, the site was (re)born.

Wait. Go back a second. Tramadol saved your life? That’s a pretty bold statement.

Well, it’s true. I wrestled with fibromyalgia symptoms and pain from degenerative disk disease and scoliosis for several years, using only over the counter pain relievers and conservative treatments. I tried everything that was available to me — chiropractic, traditional Chinese medicine, acupuncture, supplements, guaifenisin, special brands of yoga therapy — nothing really worked for me, not completely. Then I read a study abstract that concluded tramadol plus acetaminophen worked well in some fibro patients. So, I tried it. And it worked for me.

What does “worked” mean, exactly? What was the difference in your pain level or your daily life, if you will?

It was the difference between “coping” and “living.” See, I was functional all along, although sometimes just barely. But I was always in a level of pain that prevented most physical activities, including playing with my daughter and housework. The housework part I didn’t mind so much but the playing with the kid? That one was bad news. The combination of tramadol and acetaminophen let me regain some measure of physical activity.

So are you all better now?

I wish. Far from it. I still have flareups — lately, I’ve had a lot of bad ones. See, as my other chronic conditions get worse they seem to trigger fibro flares. When that happens, it’s like a really bad flu, all the time. Horrible aches and pains, complete lack of energy. Even pulling the bedcovers up over my torso makes my arms feel like I’ve gone ten rounds with Tyson in the ring.

What do you do during flareups?

Cry. Whimper.

No, not really. I try to avoid that, if possible. It never makes me feel better to sink into that feeling. I try to embrace the concept that there’s pain, and then there’s suffering. Pain may not be optional for me, but suffering? Totally optional.

So, if I can muster the energy, I sink into a very warm bath for a long, long while. If not, I take an extra acetaminophen with a tall glass of cool water with a dash of lemon juice, and lie down wrapped up in blankets (warmth tends to relieve the symptoms). While I’m lying there, I try to quiet the negative self-talk and count my breaths. Anything to stay in the moment and away from that spiraling “what this pain is going to become tomorrow?” feeling.

You say it got worse recently. What’s that been like?

Well, it put an end to my legal career, prematurely. I’d planned to resign for some time but not quite this early and certainly not like that. But I had to face the truth in 2009 — that I just could not continue to do the job, not in the way the clients needed me to. So, I resigned. Now, I’m focusing on transitioning into full-time writing and coaching, two things I am very passionate about and love to do. Plus, I think I’m better at that than being a lawyer, frankly. Lawyering was always something of a tortuous exercise for me — it didn’t come naturally the way writing and coaching seem to.

And what’s next for you?

Well, I hope to grow this website into something valuable for all chronic pain sufferers. No matter what the underlying condition might be, we all have similar obstacles to face. We have to renegotiate life, basically, on completely new terms. There are legal issues, and relationship struggles, and parenting crises … basically every aspect of life is impacted by chronic pain. I want to help others navigate that obstacle course and do something more than just live through it. I want to help others bring joy back into their lives.

So, I’m writing a book, which for now is tentatively titled The Euston Arch’ Thrival Guide to Living Beautifully With Chronic Pain.

Anything else we should know?

I hate liver. Also: humid heat.

But you lived in coastal South Carolina. For — like, ten years.

Actually it was thirteen years. Yeah. I know. Not too bright, huh?