The Cave

Coming out of a flare from any one of my chronic diseases is a bit like emerging from a cave. The light blinds you at first, but then, when you can see everything clearly and reengage with all of the colors of the world, there is a bit of euphoria and a sense of indestructibility.

With at least three chronic illnesses battering my body, I’ve been spending most of the last two years in the cave. Sometimes I can sit at the mouth of the cave, watching the world go by and knowing that if I had just a little more strength, I could join everyone in the sun. Other days, I’m burrowed so deep in the cave that I barely remember the existence of the sun.

The past two weeks, I’ve been stuck in the back of that cave. It started with the pain. Not the normal pain that I feel every day now in my hips, the pain that can’t be treated and is a constant reminder that I will never be well. No, this pain was much worse. It was everywhere, for one thing. Next to the ever present companion of hip pain, the most frequent pain comes from my shoulders and knees. My back aches often in the morning, but that is common for everyone my age, so I don’t even count that pain. If I type for too long, I develop little carpal tunnel pains in my finger joints and wrists. But last week? Last week, the middle of my hands hurt. The pads of my palms were so sore that holding a pen was difficult. My chest began to hurt so that I had to go without even a sports bra in order to breathe without pain.

Pain is awful, of course, but I can take pain. I live in pain every day, and you just get through it. A little more pain wouldn’t have knocked me down so far alone. What really gets me is the exhaustion.

Did you know that there is a point at which your body and mind become so exhausted that they begin to fight sleep? I first experienced this phenomenon when my oldest son was a baby. The child has always been a grazer — he can snack all day long and completely ignore regular meal times even now. As a baby, there was a phase where he would only sleep two hours at a time, waking us for food all night long. My husband was working, so the job fell to me. At some point, I became completely overwhelmed by the lack of sleep. I remember crying on the couch one night as my husband played video games in the wee hours of the morning. He had volunteered to take over the feeds for the weekend so I could sleep, but I couldn’t rest. I wanted to jump out of my own skin.

I think this time the exhaustion began because the pain was keeping me awake. When I hit a point where I was completely unable to sleep with the pain, it pushed me over the line into exhaustion. I was then unable to sleep each night until 3 or 4 a.m. During this time, I also began to lose my appetite. The smell of food began to make me nauseous, and I could no longer make dinner for my family. Instead, I hid in my upstairs bedroom until the odors faded and I could come downstairs for a small snack of a granola bar or some nuts and cheese.

Finally, my body hit the breaking point and I was able to sleep. And sleep. And sleep. I was sleeping 12 hours a night or more and in the morning, my body felt like lead. Keeping my eyes open became an insurmountable hurdle. When I did wake, every little movement was a strain on my resources. Taking a shower was an ordeal, and afterward I would need to sit on my bedroom floor wrapped in my robe and with a towel on my head waiting for the energy recharge so I could get my limbs to put on my clothes. I began to stop getting out of bed entirely. One or two sorties down to the kitchen to take medication or grab a drink were all I could manage.

Today, waking up was hard. I still had heavy eyelids that kept closing on me two hours after I wanted to get up. But once I was up, I felt pretty good. The pain was manageable. I was able to get through the shower without leaning on the wall. It felt like a small miracle. I still have the shakes from not eating, and I didn’t finish all of my chicken at dinner. But I did make dinner without feeling sick, and I’ll be able to clean up the mess I made after a little rest.

Tomorrow, I may be cowering back down in the darkness, but today I will enjoy the sun.