[This post is part of my Medical Conditions Series.]

It feels like my left testicle is being squeezed and yanked out of place. (And that is not an entirely inaccurate description of what has actually happened.) And yes, it feels just as miserble as it sounds. The pain varies in intensity, but it never goes away or even dips below excruxiating. What started as an occasional mild discomfort after a surgery I had when I was 10 gradually grew over the years into an intense, disabling neuralgia. I’ve had various surgeries over the years in an attempt to deal with it, and each helped a bit for a little while, but then the pain would return even worse than before. Our best guess is that a nerve (or several) got caught in some scar tissue and is getting pinched increasingly harder as the scar tissue hardens over time. Doctors are somewhat reluctant to try more surgery for fear of creating more scar tissue; I am considerably more reluctant than the doctors at this point.

The pain makes any sort of activity difficult. Lying down and resting is tolerable. I can sit for a few minutes without difficulty, but after 30 min the pain will ramp up and will continue getting worse until I lie down and rest. Standing is worse–anything longer than 5 minutes will ramp the pain. I can walk (more like limp) short distances, but anything longer than a block will be slow, painful, and exhausting. Around the house, I’ll shuffle from room to room; outside the house, I generally use a wheelchair. Stairs are very difficult and I have to take them slowly. Running and jumping are technically possible, but I pay a heavy price for them over the course of the following weeks so I studiously avoid them.

It takes an enormous amount of energy to fight off the pain; I am easily exhausted. I typically spend half of my day sleeping, and the other half resting or reading while lying down. The pain makes it very hard to concentrate and my meds fog my brain as well, so I’ve had to abandon both work and school. What little energy I do have, I spend on taking care of my kids and (what remains of) my health.

Sustainably, I can do activities and interact with people for an hour or two each day. On any given day I can do more, but it will cost me–my pain will ramp up as the activity goes on and I will need extra rest over the next few days (or weeks if over-do it). If I’m careful and plan ahead, I can get extra rest in the days before an activity and then splurge for an extra-long activity without the aftermath becoming too severe, but I can only pull that off once a month or so.