Earth to Ethereal
H. A. O'Connor

About the author : Earth to Ethereal: Eclectic and Eccentric, Spiritual and Sublime When it comes right down to it, I guess I just really enjoy sharing the human experience, whether through writing stories and poems which, hopefully, resonate with readers or by following the path to a simpler, more earth-friendly lifestyle. Thanks for sharing the experience with me!

Hello, Before I Fade Again

Ethereal, Searching for Inspiration 4 Comments

Okay, maybe that title is a tad bit dramatic, but Hyperbole is my middle name, so…. Besides, it’s not that far from how I feel right now.

Actually, at the moment, I’m feeling a little like Wonder Woman. No invisible jet or unbreakable bracelets, but I’ve been enjoying more energy, fewer aches and pains, and a clearer, brighter head than I’ve had in … a while. Longer than I care to recall.

Erika Wittlieb

Image via pixabay/Erika Wittlieb

Wish I could remember where I parked my jet…

I have Fibromyalgia, although I haven’t yet become comfortable saying so. (I’m practicing, though–so thank you for giving me the opportunity to speak. I really, truly appreciate it.) Two doctors have diagnosed me with this condition based on my symptoms, after multiple specialist visits and tests have helped rule out other possibilities–Chronic Lyme Disease, Thyroid Disease, various types of arthritis, Lupus, etc., etc. There is no definitive test for Fibro as of yet and it has only recently been recognized as “real” by the medical community (and the all-powerful insurance companies).

Fibromyalgia is often described as an increased sensitivity to pain–also known as a lowered pain threshold–but I have to be honest, I sort of detest this description. Accurate thought it may be, as a Fibromyalgia sufferer,  it makes me feel like I could be fine if I’d only toughen up a little–like other people feel the same pain I do and they just deal with it instead of letting it get them down.

Yet, I’ve known pain. I’ve given birth, for instance. In fact, I opted to deliver two of my children naturally, in part due to a morbid sort of curiosity: I wanted to see if I could do it. (For the third, I decided to see how the other half lives. Only kidding; there’s often pain involved with epidurals, too.) My point is not that I’m tougher than the average person, but that I’m not weaker, either. I’m not a wimp when it comes to pain; there’s something wrong with my body and it hurts. A lot. Almost every day.

tpsdave

Image via pixabay/tpsdave

Eh, suck it up

Please understand, I’m not oblivious to the fact that there are far worse things from which to suffer. Fibromyalgia may be a pain in the … lots of things, but it’s not overly dangerous. It is chronic and has the potential to last a lifetime, but it apparently doesn’t damage the areas in which it causes all this pain.

Anyway, we were talking about my sudden upswing in health, weren’t we? So, why the improvement? Shortest answer: weeding. Longer answer: after decades of gardening and forest-exploring, I finally caught poison something (sumac, possibly?) and had to be put on steroids to recover. Apparently, steroids can also help alleviate some of the symptoms of Fibromyalgia. So, next time I’m feeling especially Fibro-ish, I’ll go out and roll in some weeds. No, not really. Well, maybe … uh, no, probably shouldn’t.

A Fox

Image via Unsplash/A Fox

Weeds, glorious weeds!

So, these steroids I’ve been prescribed? Wow. If I felt like this every day, it might be a worthy trade off, even if I ended up looking like 1980’s-era Arnold Schwarzenegger. My brain works, my body works, my energy works. I feel the way I used to feel when I was well and, yes, that could become addictive. But of course I can’t stay on steroids. I have exactly two days of medication left (out of nine) and then? Hmmm.

To be honest, knowing this relief is temporary makes me feel like I’m about to disappear. It makes me feel like calling, emailing, and visiting everyone I can, before time runs out. I know what kind of person I am, under the cloak of Fibromyalgia–at my worst, I can barely summon the energy to talk and, at my best, I still seem a little Eeyore-ish, a little sluggish, a little lost and maybe more than a little bleh. I know this, but I don’t know what I can do about it. Steroids are only a temporary help and and the long-term medications my doctors have prescribed tend to be so strong they’re zombifying, or so mild that they only blunt the edges of my symptoms. So, for now, I’ll enjoy the relief while it lasts. I’ll write and talk and clean–do whatever I can, while I can.

selfie-1209886_1920

Image via pixabay/Unsplash

Selfie: The Face of Fibro

Regardless of how soon it ends, this brief interlude from Fibromyalgia has taught me a valuable lesson: I have been sick. My body does hurt every day–my joints, my head, my muscles–and, no, that’s not the norm for the average, healthy person. My fatigue is so overwhelming at times, I feel like I could slip into a coma at the drop of a hat. I try to plan activities–writing and chores, even driving and socializing–around this flu-like exhaustion, but it’s difficult, because Fibromyalgia is unpredictable by nature. My brain, too, drifts with a thick fog (known as “Fibro Fog”) almost constantly. It takes an effort to locate thoughts and pull them forward into the light. Then, it takes an additional effort to keep them there. And the forgetfulness…. Um, what was I saying? Oh, I know: symptoms. There are plenty of others, some I won’t go into, but as a few examples, I get regular doses of hives, including from exposure to the cold, I suffer from restless legs syndrome and insomnia, and then there are the mental aspects that spill over into the physical–such as anxiety and depression.

Yes, this Fibro reprieve has been a blessing. It has shown me, clearer than I’ve seen before, how real Fibro is and how much of my life it impacts. I’ve confirmed that Fibromyalgia doesn’t live in my imagination. It may not yet be testable and many people–even medical people–may still not recognize that it exists, but my body knows it is real and now the rest of me believes, too.

So many people–including several among my friends and family–suffer with invisible illnesses or other conditions, such as chronic pain. If you do, have you learned to cope better over time? Does it help if there’s a definitive test for your illness, or shouldn’t this matter? My hat is off to all of you. I know how hard it can be to keep a smile on your face, when you’re struggling on the inside.

Alex Blăjan

Image via Unsplash/Alex Blăjan

For all those who live with illness–invisible or otherwise

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4 Comments

  • Marlene on July 27, 2016

    Another brave, honest blog by a writer who shares all that she has with us, the readers! I think a lot of people suffer from unseen illnesses and are judged by people who just don’t understand. I mean, how would they when you are taught to just “suck it up” or “everyone has hardships, just don’t speak of them” mentalities. Understanding goes a long way in making change. Thank you for enlighting us all!

    • Author
      H. A. O'Connor on July 27, 2016

      Thank you so much, Marlene! I agree, so many of us suffer in silence, when it really does help to talk. We all face our challenges as individuals, but when we support one another, it only makes us stronger as a whole. Your support means so much, so I thank you with all my heart!

  • sher on July 28, 2016

    What a beautifully written description of your every day. Sad to know that you deal with continual pain and tiredness to the point of exhaustion at times but you do so many things through it all. Hoping some day they figure out how to make the pain go away and give you the energy level that the short-term steroids did. There must be something out there that turns the key to good health without the risky side effects. At least you are able to talk about it and share and there are so many others that deal with what you have but cannot describe it so clearly. Hope they find the key to turn things around. In the meantime, you are truly a spokesperson for those who suffer from this disease which cannot be seen by others but can be so disabling by the ones who deal with it daily.

    • Author
      H. A. O'Connor on July 28, 2016

      Thank you so much for your comment! It really touched me and I’m sure anyone dealing with invisible challenges would feel similarly. Everyone–ill or not–faces individual struggles, of course. It does feel good to have them validated, though, and also to have your successes appreciated. Thank you again!!

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