Accessibility / Spoonie Challenges / Writing journey

Now You Feel it, Now You Don’t: Am I disabled or not?

My body is twitchy. A tiny increase in pressure, a centimetre difference in a sidewalk slope, even a minuscule shift of someone’s buttocks on the sofa cushion beside mine can cause waves of pain to fire up my spine, sliding my bad hip out of place and burning through my thighs and calves. I wince and hear, “Oh did I hurt you?” or worse, I hear a sigh.

Living with intermittent chronic pain is not easy for the sufferer or their loved ones, particularly when you’re not “visibly” disabled. It’s even less understandable when your small motion beside me is excruciating today, and I will barely notice it tomorrow. When you walk toward me, I might feel the floor flexing slightly, or it might feel like a jackhammer pounding up each vertebra.

On a bad night, my husband rolls over in bed, and I struggle to rearrange my limbs quickly into the least painful position before I fully wake up. On a good night, I barely notice and make the minor adjustments necessary without waking. 

I can feel you dropping a book on a table on another floor. And that tiny reverberation awakens pain in my hip or neck. Except on the days when it doesn’t.

I have a lot of pain triggers. Barometric pressure. A new pair of shoes. Jeans fitting too snugly, a bra sliding out of position, overexertion, an overly enthusiastic hug, sitting for too long, not sitting enough. Or nothing at all. Some days I just don’t have the spoons to risk doing anything that might set off two or more days of coping with pain.

I watch a lot of TV (while knitting because I have to do something), and my legs are in continual motion. First one ankle crossed over the knee, then the other, then crossed at the ankles, then mid-calf on a knee, than the other. The movement reminds my hips what normal is supposed to feel like and keeps the bad hip from sliding out of position, a painless process until I stand and discover it has migrated to the bad place where the pain lives. 

I can walk for hours, albeit slowly, in the woods on the wonderfully springy and resilient ground, but 20 minutes on a hard city sidewalk will linger in my hips and lower spine for hours. Unless it’s a good day and I feel nothing except the welcome tiredness of exertion.

I love writing but I almost stopped completely because sitting at a computer for more than an hour caused my shoulders and neck to hurt along with both of my hips. To my children’s chagrin, I’ve replaced our shared computer space with the stand-up desk my chiropractor suggested. They have chairs in front of it but I never use one. That three-hour window of pain free writing was definitely worth rearranging the office and the financial investment.

ID: Stand-up desk in office space with laptops and monitors, and two stools as a sitting option.

Am I really disabled if I’m not in pain 24/7? 

I don’t use prescription meds. I don’t need a cane or a walker or other mobility device. I don’t look disabled. I’m only intermittently grumpy with pain. I write while dancing in front of my desk and singing along to Panic! at the Disco or Adele, revelling in the ability to work for more than a few minutes at a time. How can I be disabled if I can do this?

But…

I organize my life around pain avoidance. I wear one of two different back braces to help me cope with demanding tasks, like being physically active for a three-day writing convention. Sometimes, like when I’m sitting in a canoe, I wear both. Just in case. I carry three different types of pain meds with me at all times. 

It’s been suggested a few times that I just stop doing the things that hurt. If only it were that easy! You think it’s frustrating that you don’t know what triggers my pain? Try living in this defective meat shell that loves walking one day and can’t do it the next, that sits comfortably today and next week wants to lie down and whimper. It would sure make my life easier if I knew what caused my pain.

I’m thrilled when winter ends and the torrential rains of spring appear. My aches will increase for a few weeks while the barometer bounces up and down, but ah… bliss is just ahead! 

Summer. Warmth to soak into my arthritic hips and deflated cervical discs, taking away the continuous pain of winter. The short weeks of summer will blur together; walks in the woods with husband and teenaged children; bike rides, wonderfully smooth motion that keeps me exercising without jarring my hypersensitive spine too much.

Then late September and the bouncing barometer is back for October and November storms. And the deepening lines on my face will redraw me into a woman trying not to wince when her child hugs her. Because even a single touch can hurt some days.

I just wish I knew which days.


Carolyn Charron

Carolyn Charron is a speculative fiction writer with short stories in three Flame Tree Publishing anthologies (Supernatural Horror, Dystopia & Utopia, and Murder & Mayhem), online in The Saturday Evening Post, and in Nothing Without Us (Fall of 2019).

On the editor’s side of her desk, she reads slush for Apex and Lightspeed magazines and has been a juror for Speculative Literature Foundation grants. She spends far too much time on Facebook and not enough on her blog or Twitter. She lives in Toronto with her family and is currently working on a Canadian historical trilogy combining a lesbian blacksmith, magical clockworks, and a menopausal pirate.

You can follow Carolyn on Facebook, Twitter, and her blog.

4 thoughts on “Now You Feel it, Now You Don’t: Am I disabled or not?

  1. Dear Carolyn, I just read your story about whether or not you are disabled, and I would have to say you sure are! I’m wondering if you have been diagnosed with a specific type of arthritis. I have Ankylosing Spondylosis and, at 29, couldn’t walk across the room without such bad pain in my lower back and hips that tears immediately fell from my eyes. Fortunately I had been referred to a Rheumatologist because of a recent Iritis diagnosis from my eye doctor, and the Rheumatologist’s tests revealed AS. He put me on a drug called Tolectin (NSAID) and within 30 minutes I walked pain free! The drug company stopped making the dose I was on so I was switched to the drug I’m currently on called Tiaprofenic Acid (or Surgam) 300 mg., twice daily. It not only helps my lower back (hips are artificial since I was 36 so I don’t know if it would have helped them!), but also the arthritis elsewhere in my body. Perhaps it can help you too? Just take it after a meal on a full stomach, and don’t lie down for at least 20 minutes afterwards. I hope something can help you because chronic pain (I’m now on Dilaudid (Hydromorphone) and Tylenol 3 for multiple other pain problems) can ruin someone’s life. My migraines were so frequent I was seriously considering suicide. Best of luck finding a medication or perhaps a Biologic like Remicade, Humira, or one of many others that put my Crohn’s disease into remission.
    Judy Williams

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  2. Thank you for you comment. I have osteo-arthritis as well as degenerative disc disease and multiple fusions from scoliosis surgery. I’ve been seeing doctors to manage it for years. I have a good system in place. 🙂

    Like

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