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When I 'Overdo' Things in Life With Complex Regional Pain Syndrome

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One of the biggest struggles I face is this: I overdo things.

With complex regional pain syndrome (CRPS), I am exhausted by the weeks and months without a break from relentless pain and new problems. I spent 10 weeks on crutches last spring, followed by three to four months of compromised mobility, hobbling and limping to every destination.

I was only a few months beyond recovering from knee surgery when I developed terrible tendonitis in my elbows and hands. I had trouble holding the hairdryer and walking the dog. My fingers couldn’t grip well and they ached like hell whenever I typed or used my phone. I really got worried when I started having involuntary tremors in my hands.

I’ve been out of work for five months this go ’round. I really never imagined I would move out to LA just to be struggling to pay a ridiculous amount of rent with disability income. But, this isn’t the first time I was blindsided and had the rug pulled out from under me by this disease.

In 2008, after two solid years of doctor appointments, lab tests, imaging, and procedures, I was given the diagnosis of Lyme disease and CRPS, but not before I’d had an unsuccessful, unnecessary, bilateral knee arthroscopy. It took more than a year for me to recover from that surgery, but I did recover. I told everyone I was 100 percent better. I wanted nothing to do with being disabled or pitied for my health condition. I didn’t want to see myself as inadequate. I’ve always been self-sufficient. Being vulnerable and asking for help are not my strong suits.

I suppose I was unrealistic when I moved here; I really thought I’d kicked this thing.

In 2014, I was diagnosed with interstitial cystitis, a painful, neuroinflammatory disorder of the bladder. I was in the worst pain imaginable. It felt like a urinary tract infection, but was not helped with antibiotics or traditional UTI therapies. Anyone who’s ever had a UTI can vouch for the sheer misery of it. I was living with that severe pain every day for months on end.

Nothing really helped it, I just learned to cope. I agreed to weekly procedures, a bladder instillation of lidocaine, heparain and sodium bicarbonate. This painful instillation was supposed to calm the irritated epithelial cells that lined my bladder. These cells were aggravated by the chemicals in food, stress hormones and chemical processes.

The instillation did little to help and required a catheter three days a week for six weeks. I had to follow a strict, new diet that excluded coffee, chocolate, alcohol, seasonings, spices, tomato, and carbonation, and most other orally ingested substances I enjoyed. I couldn’t tell if it was just time or the instillations, but eventually I felt a little improvement in my pain. I still had an annoying issue with retention, but I was happy to be in less pain, so I accepted it and learned to manage.

After about 18 months, I slowly started reincorporating things I’d been desperately missing. Every once in a while, I’d have my vanilla bean creme frappuccino with one shot of espresso. If that worked out well, I’d buy myself one or two a week, until my bladder spoke up, reminding me I didn’t have the privilege of just having coffee whenever I wanted. Frustrated, I would just skip it altogether for a few months.

I felt better around the holidays last year. Since Christmas happens to be my birthday, I gave myself permission to have a glass of red wine, hoping to be able to finish a whole bottle during the celebrations that week.

I had that glass of wine on the 23rd of December. By Christmas Day, I was again in agony.

I didn’t pick up another glass of red wine for months.

Black or white. That’s how I think. All or nothing. Amazing or awful.

Take running, for example. I have a chronic pain condition that is triggered by painful stimuli. I had knee surgery this year, and though I recovered well, I know I am not supposed to be running or doing exercises with impact.

Just because I know it, doesn’t mean I believe it.

I know all about CRPS, I understand the pathophysiology, meaning how it actually changes my biology. I know how and why I got it.

But I still don’t believe I can’t beat it.

Running is the evidence of that. I don’t respect my limitations. Rather I hate them, and I challenge them, usually to my detriment. Once my body has finally cut me some slack, my brain decides to do the opposite.

“Work harder, you slug,” I hear in my mind.

Sometimes I feel like my body hates me. It’s kicking my ass and I can’t keep up with its demands and the pain it causes me. I tell myself I should rest, I should take it easy and be true to myself by not forcing things.

Sometimes I feel like I have control over my body. I can whip it into submission, and it does what I need it to do. Even then, I’m walking on eggshells. I pray to God not to take mobility and freedom away from me. I love walks, jogs and hikes. Nothing makes me feel better. I need the space to clear my mind and my body needs the feel-good hormones to cope with my life.

When I am feeling strong, I like to challenge myself and set goals to crush them. I need to be consistent to progress. Walking around the neighborhood a couple nights a week after dinner is completely different than committing to a gym program, locking in the days and times, working with a trainer, and leaving drenched in sweat and feeling like a million bucks.

Again, it’s all or nothing.

I am coming to recognize this pattern in myself and the ways in which it has contributed to the emotional and physical rollercoaster of CRPS. I need exercise. I need it more than I need medication. It keeps me sane, happy and fit. But every time I make the choice to run, jump, twist, or otherwise push my body past the point that I am confident it can maintain, I am choosing to potentially rob myself of a daily dose of sanity.

A fine line exists between a personal challenge and pushing past the breaking point. A fine line also exists between the freedom of mobility and the reality that I could send myself into a downward spiral that could last days, weeks or months.

I get completely overwhelmed with feelings of frustration, anger and defeat. Every time I have a flare, I think about how much I hate my body and my limitations. I haven’t learned to love myself in sickness and in health, for better or worse.

I see my sick self as pathetic and lazy. I hate that self more than I ever knew. I hate that my kids can repeat my phrases about what hurts and why, rolling their eyes, so tired of hearing about it.

You’re just a bother to people,” the voice in my head repeats when I complain about pain. It makes me want to isolate. When constantly trying to avoid an outward expression of pain, options in a social environment are limited.

The therapist’s suggestion for my all-or-nothing thinking is to learn “pacing.” The idea is to maintain a level of activity that does not push beyond that vexing threshold which inevitably leads to injury or pain.

Here’s my cycle: I think I feel better, overwork myself to the point of injury, I have to stop exercising and promptly depressive symptoms set in. Once that happens, I begin to awfulize, thinking I am getting worse and becoming angry about life in general. This triggers a boatload of emotions, everything from the anger about being a single mom to hating my job and wondering if I will ever “amount to anything.”

My CRPS lives at the junction of emotional stress and physical injury. Neurotransmitters win the day and I find myself back on a heating pad, binge-watching Netflix or typing away at my computer.

But I get it. I need to pace myself. Accepting this painful reality is brutal. I look in the mirror and I see a strong, healthy, capable woman. Mentally, I could run marathons; physically, I can only walk around the block a couple of times.

This discordance is what troubles me. I can’t reconcile the two. Bewildered, my inner warfare persists.

The answer to my question is simple, but not easy. I should appreciate what I have and focus on what I can do.

I will do the best I can to honor my limits, being careful to also honor my spirit’s longing to be well. The scale will always lean a little heavier in one direction or the other, but I’m getting closer to balance, even if just for today.

This story originally appeared on Incidental Essayist.

Getty image by Bernard Bodo.

Originally published: June 1, 2020
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