When you wake up one day and learn your entire world has changed in the blink of an eye, it’s difficult. It’s difficult to accept. Difficult to deal with. You mourn, you cry, you curse, you scream, you research, you make a plan, you pitch the plan, then you make a new plan, and every day, you think “it gets easier,” but you aren’t sure when. So you wait, and you wait. And you wait some more. Then you cry some more, curse some more, begin grieving all over again, and remind yourself it gets better… eventually.

After 17 months, I’m still going through this process. If it sounds like I’m talking about the unexpected death of a loved one, you’re close. Unfortunately, that unexpected death was my own. I may not have physically died, but parts of me did. And until you’ve gone through this, you can’t know, you can’t truly understand what it’s like to wake up every day and wonder when does the mourning end? When can I take off the black veil and be me again? Oh, yeah, I can’t. That person died.

They were replaced by this crippled, pain riddled body that doesn’t smile very often anymore. Doesn’t want to feel anymore, emotionally or mentally or physically. You never know what’s going to trigger this spiral back into the murky depths of loss, depression, anger, hate, and disgust.

For me, it was a doctor’s appointment with J. On the morning of 21 February, J and I arrived at his appointment to get the stitches taken out after his surgery. I was sitting in the lobby, waiting. J was talking to someone he knew. I heard this shaky voice talking loudly. A woman’s voice. I turned to look, because she said “They call it the suicide disease.”

As I watched, this frail, little old lady was saying these words to someone I presumed was her daughter. I’m not good at guessing ages, but I’d say she was 70s or 80s. I am intimately familiar with that disease. I turned in my chair and said “are you here for CRPS?” I asked. Both women looked surprised. The older woman said “Yes, I’m seeing Dr. Wonderful, I was just diagnosed. Last winter, I fell and broke my arm and now it hurts more than it ever did when it was broken. Are you familiar with it?”

It was my turn for my voice to shake. “Yes, I was diagnosed with it in my hip last year, but I’ve had it in my right arm for 25 years.”

“Does it get better?” Her companion asked. Does it get better? No. You have good days and bad days and the bad days outnumber the good. That’s why there’s a 98% suicide rate for sufferers with CRPS within 10 years of symptoms starting. She was there to get a referral to a specialist, they were hoping to send this older lady into remission with ketamine treatments and she was seeing Dr. Wonderful to get the referrals to the specialist in St. Louis that does ketamine treatments.

But you can’t tell someone “No, it doesn’t get better.” It’s a battle to wake up everyday and get out of bed and know that within 10 or 15 minutes of your day starting, you’ll be ready to cut off body parts. That you’ll never get a good night’s sleep again as the pain wakes you up, sometimes crying, sometimes screaming because the pain has gotten so bad while you had your eyes closed.

You can’t tell them that sometimes, when you close your eyes as the last pain pill of the day kicks in, you hope you don’t wake up in the morning. Or that the treatments suck almost as bad as the disease itself. You’re going to have needles stuck into you, you’re going to have nerves numbed and that process is going to make you yelp or whimper or cry… I’ve even heard people scream as the needle found the right nerve and I’ve clenched my jaws so tight while they dug for that awful nerve that I broke a tooth, but I didn’t scream and no one saw the tears that leaked out.

And if you are lucky, you’ll get some relief from the needles, but it won’t be pain free, it will only be less pain. You can’t tell them that the epidurals hurt like hell and may or not work and even those, won’t make you pain free. It will just take the edge off the pain for a couple of hours… Unless you’re unlucky and you’re like me and those nerves never went numb after the digging of the needle in my back and the finding of the nerve that shot pain from an area near my right kidney down to my toes.

Just like you can’t tell them, that maybe not today or tomorrow or next week, but eventually, they are going to hurt themselves again. It may not be a major injury like a broken arm, it may just be a small cut from a thorn or the slip of a knife during vegetable chopping or accidentally burning yourself on a hot oven and then the pain will spread to the other arm. Or a leg. An ankle. A foot. A shoulder. Your spine. Or worse, you’ll stand up wrong and tear the cartilage in your hip joint and then, there it is in your hip. Then the other hip, because it’s hard not to limp when it feels like your hip is broken, but you force yourself not to because it puts stress on the opposite hip and you know that’s just this disease waiting for you to make a wrong move.

What words adequately describe a neuropathic twitch that isn’t exactly painful, but is a little more intense than discomfort? Or a muscle spasm that makes you feel like your body is trying to rip itself to pieces? Or that if the alternative treatments with the needles and nerve blocks don’t work, she gets to look forward to having a spinal stimulator put in or a pain pump and that if she is forced to rely on oral opiates, her life will suddenly revolve around when she can take her next pill. Or tell her, if you don’t have high blood pressure and problems with tachycardia now, it’s probably only a matter of time. Or that she may slowly begin to feel isolated and bitter?

Or that all those people mean well when they tell you that you just need to move more or try this diet or try this treatment, but they don’t and can’t understand, not really. Just like you will slowly learn to dread these phrases “I have lupus”, “I have rheumatoid arthritis”, or “I have fibromyalgia” and that once in a while she may want to scream in their faces “Then consider yourself lucky!”

Nor can you find the words to explain “Yes, CRPS is neurological, but there’s not another neurological disease like it on the planet. There’s not another pain disease on the planet like it. If there was lupus, rheumatoid arthritis, fibromyalgia would be nicknamed “the suicide disease” too. And they too would have a 98% suicide rate for sufferers within 10 years of the onset of symptoms.

Just like you can’t tell a stranger “try marijuana, try CBD oil, try the opiates, try the physical therapy, beg for the ketamine, change your diet, try the torturous needles and if any of them brings your pain down from ‘I wish I would die to maybe I can get through today’ then use it to the maximum benefit to you regardless of what anyone else says or thinks.”

And the entire time, I’m sitting there pleading with the universe that this appointment goes fast, I haven’t taken my morning pill yet, because I didn’t want J’s doctor to look at me and wonder if I needed an intervention. Because doctors can tell and this doctor has never treated me, he doesn’t know my hip always feels like it’s been pummeled with a sledgehammer. I look “fine” unless you pay very close attention. I have a slight limp that I can’t shake, but it isn’t so pronounced that everyone immediately notices it, even doctors don’t usually notice it until they’ve seen me a half dozen times or so.

Does it get better? Eventually. I don’t know how long that takes, I’m still waiting for eventually to become now.

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