This post is a bit of a continuation of yesterday's post, in case you haven't read that yet. I know before that I mentioned a whether or not a medication is "holding" for me. I don't know if I've ever explained that...
When I say a medication is "holding," that means that it lasts as long as it is supposed to and is doing what it should do at its peak level. So for instance, when I use a valium suppository at night, if it "holds," that means I wake up with little-to-no pain in the morning. That makes it much easier for me to get "ahead" of the pain, keep it under control, and need fewer pain medications throughout the day. This past week, I felt like the valium was no longer holding because when I woke up, I felt pain immediately. That means I need to take my pain meds in bed and stay lying down until the pain goes away or I'm going to be dealing with pain all day.
As far as getting ahead of the pain, I also don't know if I've explained that either. Pain meds work best if taken at the first onset of pain, before it gets really bad. At this point, I can judge a twinge of pain pretty quickly and decide if it warrants a half of a pain pill or a whole one and if it is going to be a good day or a bad day. Now, if the valium holds, I take a half of a pill in the morning and then another later if I feel that "twinge." Sometimes I don't feel it for most of the day and that's why I've been able to steadily decrease my pain meds since beginning the valium. Sometimes I try to push past what I know is the beginning of pain and I know I will pay for it later. Later it will just hit and I will need to not sit or stand and take pain meds. I believe this is inherent in all pain meds. They work better and faster on lesser pain. As it grows, it takes longer, which means you're enduring more pain and it's hard to stop. That landed me in the emergency room quite a few times at the beginning of my illness before I was diagnosed because an IV is fast-acting and can sometimes do what regular pain killers can't. (This of course was before I was managing pain with the correct medication and correct lifestyle and schedule).
For instance, at my family birthday party I stayed longer than I knew I should because I was enjoying myself (thanks family!), but when the pain stopped being a twinge and started being pain that makes me want to double over, I knew I had to leave. And I could not leave fast enough. It's hard, because there's no good way to communicate all I just said to you in a word or less but sometimes that's what it needs to be. I know that it looks weird because my pain is internal, I'm not wearing a cast or anything so I can be looking completely fine, and then say "I have to leave RIGHT THIS SECOND" and people may not understand why. I mean, I look the same as I did a second ago. Unfortunately, how I felt changed rapidly and the only way I can even think to show it would be something akin to flopping around on the floor yelling "Ow, Ow, Ow" and that would not be all that helpful for anyone. I have a disease that is mostly invisible but I am able to manage it. I just need everyone to trust that I will manage it and that I like having fun and will do so as long as I am able, but telling me you don't want me to leave or wish I could stay longer is not gonna stop me from bolting to the door! Sometimes not being able to leave fast enough or wondering about people's reactions when I feel the need to leave makes me consider about whether or not I should even attend something. Over the years I have felt judged if I don't stay long enough, if I don't say proper good-byes, and I have heard afterwards comments like "Well, she liked like she was feeling okay." That's what's hard. It feels hurtful that someone would think I was not being truthful about not feeling good or would think that I'm just over-reacting to what should be manageable discomfort.
For now, a proper schedule is what saves me. If I schedule things correctly (ie. waking, medication times, hormone shot times, getting ready for bed, going to sleep) I can maintain things pretty well. It's not my old life, it's a different life. I constantly think about staying ahead of pain, making sure medications are holding the way they should, and how something is going to make me feel. It has almost become an equation in my head by now. I can add up the pain I can manage (or spoons) vs the activity and whichever side is heavier will determine whether I attend or not. It's gotten easier than it should be. I simply know what my body can handle. My body doesn't know if it's Christmas or birthdays or even just a visit. I wake up, I assess, and then I do the math.
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