As the years pass by and I am still a chronic pain patient, I wish I could say that I have become more stoic about pain. Rather, I feel like I have become more and more apprehensive about any type of malaise, to the point where as soon as I start to feel worse than normal, I flood with fear in addition to whatever other symptoms I am experiencing.
What is funny to me is that around other people, invariably if the topic of pain comes up, the other person will almost always say, “…but my pain is nowhere near as bad as yours…” Now I have no idea if that is true or not. Pain is one of those things that is impossible to measure. It’s very subjective, and at the end of the day, who’s to say whether one type of pain trumps another or one person’s “toughness” is more than someone else’s? All I know is that pain hurts. Being in pain is a pain. It’s a drain on your life and your resources on every level, and if you have pain, you suffer. It could be that my pain is really mild and I am just a big baby. Maybe I just talk about it more than other people. But the bottom line is that I am in a place with it right now that I need to get out of.
For the last few months, I have been reading lots of chronic pain blogs and books. I was looking for camaraderie, but I also wanted to see if there were any answers out there that I had overlooked. Maybe someone else had new ideas that I could benefit from. As much as I want to just accept that my circumstances are permanent, there will probably always be a part of me that can’t settle with not hoping for a miracle cure. It’s a tough balance to live in the present and not spend all my time chasing medical interventions, but still keeping my brain plugged into the developments out there that could really help me one day. But all of this reading has made me feel very anxious. Instead of feeling better that there are so many other people out there suffering along with me, I have started reliving my medical procedures and hospital stays right along with the people I am reading about. With each crash I am having in real life, I have dozens of voices in the back of my mind reinforcing that this type of situation is desperate and awful. Yes, I know it’s time to quit reading, but the problem is that I can’t quit being sick.
So laying in bed feeling horrible isn’t just horrible because it objectively is, it’s horrible because I know it will be like this for multiple days, because I know there are no medications I can take to make it better, because I know I don’t have a doctor who really understands what I am going through- and even if I did they couldn’t help me anyway. Instead of toughening me up toward pain, every spike weakens my resources for dealing with the next assault. Sometimes I have time to catch my breath between crashes, and sometimes they overwhelm me and drown me like waves in a stormy sea. Sometimes I feel like there are sharks in the waves in addition to the choppy water. Sometimes I feel like I can’t catch a break.
On the other hand, I am so blessed that I have many more resources than lots of other people with chronic conditions. I have a supportive family, with wonderful kids who help a lot and an amazing husband who always wants to do what he can to take pressure off me and make me feel better (a Sisyphean task if ever there was one). We can afford to order certain things online so I don’t have to go out to stores, and we can get convenience items that make life easier (I am currently feeling very spoiled that I have a canister of lysol wipes in every room). I have friends who drive carpool for me every single day (yes, this is a recurring theme that driving is a big trigger for some of my symptoms). I want to focus on gratitude, but I am too bogged down by PTSD.
So, what’s a chronic sicko to do? The fact that I am tormented mentally is not the same as saying that my pain is mental, although many people confuse these two premises. I am terrible at mind games like meditation or relaxation, but I am always open to trying something that I haven’t heard about before. Someone on an older post mentioned massage (maybe MelissaJoanne?), but I’ve gone a few times and it just made me sore- so if you know about this modality, what should I be asking for that I’m not? If you know of books or websites or blogs that you find uplifting, please let me know; I’m not at saturation point yet with information. And if you can pick up on something I am missing, please bring it to my attention. One of the things I am most grateful for in my life is all of you, who are always there, having my back, being great resources, and staying strong for me when I am crumbling.
Right now I’m holding my own, but I would love for you all to weigh in on this one before I crash again.
If you comment on this post, hug yourself for me! 🙂