I often struggle to explain what chronic pain really feels like. Yesterday, my husband came up with this wonderful analogy for me, from everything I have talked to him about. I think this works, as long as the reader is a person who hates the feeling of wet shoes/feet as much as we do!
Chronic pain is like going through school everyday with wet socks and shoes, like if you had to walk through a puddle on the way. So you are forced to walk all day everyday in those squeaky shoes that embarrassingly spout water out the front, while your feet feel soggy and icky. After a while, you stop noticing the wetness, but you know they are still wet because you squeak when you walk and the water still comes out the front of your shoes. You look at your feet – and they look an unhealthy shade of pale, the skin all wrinkly from being soaked all day, and you have that soggy, icky, wet smell about you. After a few days, you will probably start developing some nasty foot fungus from never being dry. All you want is one day with dry feet. But you know the next day on your way to school, you will have to walk through that puddle again.
That wrinkly, unhealthy, icky hypothetical foot has been me, recently, as I have been flaring nearly every day for several weeks. The gnawing pain has been so ingrained that I am not even sure I can put a number on it. The exhaustion when I crash could be mistaken for the smell of death upon me. All I want to do is curl up in my snail-ball of tears, let out the pain, frustration and anguish over losing so much that was dear to me to this unending beast. But crying takes some serious energy – energy that I don’t have to spare. The only way I can describe my existence is that it’s like I have a massive worm that is inside of me, and it is eating me alive from the inside – body, mind and soul.
Pain is always a part of life. But when the pain is acute and lasts for a short amount of time, it means something when one goes “ouch” from time to time. I feel like I don’t even have that luxury now. If I had to vocalize my pain now, it would be a long low “ow” moan that is a never-ending background score, with occasionally louder higher-pitched “ouch-es”. But that would also take way more energy than what I have to spare. So I settle for contorted faces and/or unhappy cat moans when things feel out of the new-ordinary.
Though fibromyalgia has given me the unique ability to empathize with others when they are in pain, sometimes I cannot help but feel some envy towards those whose pain will eventually heal and pass. People can sympathize with them when they voice their pain because it is an isolated/recurrent but brief event in their lives. In a few days/weeks, they will feel better and go back to being normal. Their energy level is often also largely unaffected throughout the episode.
But with a chronic illness, people eventually tire of hearing your painful notes and you never go back to being normal. When the energy flags, it is hard to explain why you cannot pop a couple more pain pills and be on the go; because you have been on pain pills while you have been going, and now this is the end of the line for you. At best, people are awkward around you when you express your pain or fatigue. At worst, they openly criticize you or blame you for faking it. So those with chronic pain end up internalizing it, and further isolating themselves in the prison that is their body and brain.
At least I am lucky in that I am not completely isolated. I have friends who are kind to me. Perhaps some can even take a stab at what I might be going through from time to time. I am eternally grateful for a husband who I feel lives inside my head, so he knows exactly how I feel. He tirelessly cares for me, listens to me, and his support is everything I am rebuilding my life on.
What I am rebuilding my life into, however, I am not sure. And I am also not sure I have totally escaped my own mental prison. Those are perhaps the subtler, more indirect effects of chronic pain. More on that in Part II!