I’ve been dealing with some health stuff for a while now. It should come as no surprise that I feel like poop the majority of the time. I put on a brave face and try to fake being okay, and I fool most people most of the time. It’s because people don’t believe me when I tell them how bad it is. They can’t see it, so it must not be real. A lot of chronic illnesses are like that.
Psoriatic arthritis is no joke. It hurts badly. It hurts my joints. It hurts the muscles around my joints. It makes me so tired that it’s hard to function. The meds make me even more tired, and nauseous, to boot. I am constantly dizzy and the room often spins. The psoriasis is out of control. The last round of meds gave me nephrotoxicity (that’s a fancy way of saying they were having toxic effects on my kidneys). I still haven’t stopped peeing blood and protein, and it’s been weeks. None of my meds are working to relieve the pain, but they’re adding to the fatigue. I have painkillers, but they aren’t strong enough to combat how bad this gets when I’ve run out of spoons, and I can’t take them every day, because I’ve seen firsthand what that can do to people, and refuse to become one of them.
My spoons are very, very few at the moment, and there is always too much that needs done. I run at a constant spoon deficit. I am now familiar with the feeling of completely running out in the middle of something, and having to sit down. And that’s it. I’m done for the day. I literally cannot do more. Sometimes it is everything I can do to make it to bed. Sometimes I sleep in the recliner. I have to triage and weigh every task I need to do by whether I have the energy to do it and all the other things I need to do. I did too much this week, and now I’m paying for it. (If you’re unfamiliar with the Spoon Theory check out that link. It’s a wonderful read, and I’ll be referencing it often.)
I went on a long walk with two of my kiddos today. It’s a gorgeous fall day, and I couldn’t resist going outside to enjoy it. We walked through the woods in the surrounding neighborhoods, roughly two miles. It was a wonderful walk. But when I got home and sat down, I realized I was shaking from head to toe and it hurt to breathe, and I couldn’t figure out why. Now I’m lying in bed, because my spoons are gone. Totally gone. I overspent. I’m trying to rest to get another spoon or two so that I can make dinner and watch a movie with my wonderful little family later. We may be ordering pizza instead.
There are buttons and there are batteries. The pain and nausea and dizziness and fatigue and OCD and anxiety are the buttons that get pressed to drain the battery that is me. Something constantly presses them. Every activity presses a button, or all of them at once. And every press of the button drains the battery a little more, until the battery is empty and can no longer function without recharging. And the recharging time for me is very slow if I let my battery get totally empty.
I just want one day where the pain doesn’t overwhelm me. Where the fatigue doesn’t crush me. Where I can drive a car without worry that I will have a vertigo attack and crash. Where I am free to do what I truly want to do. Where I have the energy to do what I truly want to do. There is so much in this world that I want to experience. I’m pushing as hard as I can to get back to the point where I can do those things. My extensive medicines, my physical therapy, the endless doctor appointments, the yoga, the walking, the Tylenol and Ibuprofen, the heating pads, the cupping. All of these things I accept and do because I want to get better. Oh my god, I want to get better so badly. Yet these things that are supposed to be for healing require spoons, too. Some days it feels like the medical world eats most of my spoons. I’m trying harder to let it all go. To relax into it. To allow myself to trust the doctors I’ve invested my health in. But it’s hard. Ever since the trauma after the appendectomy, it is so incredibly difficult to trust doctors to do what is in the best interests of my health. I had my new incision ripped open and cleaned out without any anesthetic, even though I was sobbing and saying “NO” repeatedly. After a trauma like that, mistrust in the medical profession runs deep in my psyche. But I’m trying very hard to relax and trust. These doctors are not that doctor. I have to trust that they are trying to help me.
And, honestly, I feel that things will get better soon. With or without medical intervention, I’m working to get myself back in shape to a point where my body can do the things I want and need it to do. Even with the spoon crash afterwards, I’m proud of myself for the walk today. I did something I deeply desired. I did something.
There is hope.
There is always hope.
Keep moving towards it.