My Trons Hurt


My trons hurt.

I did too much for this chronically ill, disabled, always-struggling body of mine. Thus, I ache EVERYWHERE, from my scalp to my toes.

Saying my “trons” (electrons) hurt has become one of the many ways I communicate to my husband that I will be, quite reluctantly, spending the day on the couch, could lose the ability to speak at any moment, and will most likely need help getting up the stairs and into bed later.

My hair hurts. The space between my toes is irritating me. My bones, joints, muscles, digestive system, and everything else aches. My skin is alive and everything touching it is registered. The seams in my clothes are painful. The strands of hair touching my face tickle and can only be relieved by scratching my skin where they’ve touched. I’m nauseous, my eyes are burning, and my head feels slightly like I’m under water.

The best way to deal with this is to rest — I hate resting and I’m not very good at it. I’m a person of activity, movement, drive, persistence, determination — stuck in a body that bends in ways it shouldn’t, shuts down to the point that taking a breath is exhausting, resembles a stroke victim whenever it feels like it, and fails me in more ways than is socially acceptable to speak about.

The other best ways to deal with this silly body is to have a good sense of humor (thus the “trons”) and to live thankfully.

For instance, I’m thankful I have this computer to speak into, a cuddly puppy on the couch next to me, my dear friend Harry Potter keeping me company on the tele, and a large supply of coffee always at the ready. I’m thankful that I have a loving husband who will laugh along with me, will help me up the stairs later today, and understands that I’m doing the best I can with what energy I can muster. I’m thankful to have family and friends I can call, when I’m able to talk, who love me in spite of the fact that I may not be able to communicate with them for weeks on end. I’m thankful that on my good days my legs and arms and ability to swallow function decently well. I’m thankful that my mom taught me at an early age the hard truth about life not being fair and that it pays to have a good sense of humor.

So … what did I do yesterday that is now consigning me to this couch? I did a bit of laundry, cooked one meal, and emptied the dishwasher. And today I did myself in by daring to take a shower — where I skipped the unnecessary steps of conditioning my hair or shaving my legs. (Confession — I’ve given up shaving my legs because taking a shower, even with a shower chair, is so exhausting that I frequently need a nap afterward.)

So … be thankful when your trons don’t hurt, when your legs work, when your eyes aren’t going wonky, when your skin isn’t crying out, when you have the ability to speak, when the skin between your toes isn’t a conscious thought, when your scalp isn’t in pain, when your body isn’t failing you in socially-unacceptable ways. Be thankful for the little things, the things you take for granted, the things you don’t think to be thankful for.

I used to be able — able to do so many things I’m no longer able to do. My life has become very small, very uncluttered, very …. different from what I expected, dreamed of, hoped for, and from what it used to be.

BUT … that’s not a terrible thing. There’s much I’ve learned because my body fails in a number of ways.

However, as my trons hurt and I’m incredibly fatigued, that will have to be a topic for another day. I’ll even let you in on why I’ve “disappeared” from life this past year, given up social media, failed to update this blog in quite a long time, and am being very careful in whom I let into my small world.

With that said, thanks for reading this far. I hope you are able to find something to laugh about today, something to be thankful for in spite of whatever trials you are facing, and something that makes you reflect on what you may be learning because of what you’re going through.

May you find joy in the midst of pain.

Till next time,



About licijoymanship

I'm a work in progress--much like this blog. So expect this "about me" to change as I do ;-) I'm an energetic person by nature living in a body that lacks energy. I'm a person of movement struggling with a body that fails to move in the ways I want it to. I'm a person who loves to be social who lives a fairly secluded life, quite reluctantly, on this couch. Living with chronic, incurable, and rare medical conditions can be discouraging and lonely. When we share our stories and listen to the stories of others, we gain valuable insights that can bring encouragement on the darkest days, ideas for new treatment options, and primarily, feel a little less alone in our struggles. My life isn't following my Plan A, my Plan B, my Plan C, or probably even my Plan X. But it's my life and I'm trying to live it the best I can while struggling with Chronic Intractable Migraine, Familial Hemiplegic Migraine, the effects of two posterior fossa decompression surgeries for my Chiari Malformation, Postural Orthostatic Tachycardia Syndrome, PTSD, (likely) EDS, (undiagnosed) Chronic Fatigue, widespread pain, and some other yet unknown issue that has left a "pocket" in the artery that runs by my pituitary gland. It's lonely, discouraging, difficult, and the only way I get through it is with a good sense of humor, the practice of living thankfully, the ability to connect with other people, and the fur-babies who keep me getting out of bed one day at a time. Of great encouragement of course, is my loving, understanding, and patient husband. I'm the girl who loves to write and yet fails to do so for long periods of time. I intend to update this blog at least once a week, but with this failing body who knows if I'll be able to stick with it. And yes, I am a woman of deep faith, so if you stick with me here you may occasionally come across some of my thoughts on Scriptural topics, so feel free to skip those if you choose. My faith has helped to form my character and is part of who I am, but it's not the only thing in my life that people can relate to and find encouragement from. Just sayin'.

2 responses