When Your Typical Pain Level Is 'Annoying, but Bearable'

I was aggravated today. My pain level is way up and that always irks me. I’ve been trying to keep it together, but that’s not an easy task. It started after dinner, on Tuesday evening. We had finished eating and started catching up on school stuff. My left hand, which was resting on the arm of the chair, fingers slightly bent, began to spasm. My fingers felt like they were being pulled further in, toward my palm. I quickly stretched out my fingers and tried to counteract the spasms. It sort of worked, but my hand felt weird. Disconnected. Almost a run-over, flat but very painful sensation. My skin hurt. The electric shocks ran from my wrist to my fingertips. It scared me. All I could do was monitor my symptoms for the rest of the night.

Wednesday wasn’t much better. The day passed with the same pain, the same numb, disconnected feeling. It’s a bizarre description, but it’s all I have. I spent the evening alternately using my finger stretch bands and a tub of therapy putty. That night, I nearly woke my husband up because the pain was so excruciating. I have no idea what time I finally fell asleep. After more than two hours of non-stop electric shock pains shooting from my elbow to my fingertips, I lost track of time. Yesterday started as a good day. My daughter was off for a citywide professional development day. We went for a walk and had breakfast together. It was so nice. But my hand was acting up the entire time. In the early afternoon, the cold in my fingers became so extreme I had to wear gloves. My skin hurt so much I had to wear long sleeves.

 

Later on, the phone rang. It was my pain management doctor’s office. They called to reschedule my upcoming appointment. I was convinced I yelled at the receptionist. My daughter reassured me I didn’t. This is the third reschedule in as many months. So I said no. I explained why I needed to see my doctor, not a nurse practitioner I’ve never met. The appointment was originally scheduled for Wednesday. She ended up moving me to Monday. So that was a victory. I’ll take one whenever I can. After I finally climbed into bed, my pain was annoying but bearable. That sums up most of my RSD-related issues, on most days. Annoying but bearable. But then RSD breaks the rules in the cruelest ways, changing the game constantly.

People with chronic illnesses have to make sacrifices and concessions every day. Missing special events, giving up jobs, wearing certain shoes, trying to find clothing that doesn’t hurt. These are things others can take for granted. We can’t.

As we adapt to life with RSD (reflex sympathetic dystrophy syndrome), more and more control is taken from us. How far we can walk. How much sleep we get. Will taking a shower be too painful? Getting a haircut because having longer hair is too painful to deal with, too difficult to manage. (That’s honestly why I cut my hair a few months back. Washing it became so uncomfortable for my hands and arms. It was just easier to cut it shorter.) You name it. It’s unfair and it’s heartbreaking. But we do what we need to do to survive. We do what must be done to keep any control possible. I’m at a loss as to how this hand/arm thing will play out. I’ve accepted the annoying but bearable aspects of my life. There wasn’t much choice involved. But the really bad days are not OK. I’ll forever resent them.

This may sound like I’m just complaining, but try placing yourself in the situation of any patient with a chronic illness. Try to imagine feeling like you’re being shocked nonstop for hours on end. Or that you’ve got a sunburn that never goes away. It’s ugly stuff. Monday can’t come fast enough. (I never thought I’d write that). We’ll see what the doctor says.

Follow this journey on Pain in the BECK.

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Thinkstock photo via kimberrywood.