Pain: The physical feeling caused by disease, injury or something that hurts the body.
We have all experienced pain in some form or another in our lifetimes. If the world is kind, we hope that it is only a temporary and brief experience. And even if we don’t get a say in how long the pain lasts, at least we get to cling to the hope that it will eventually lapse so that we can then switch gears to healing instead of hurting. But what happens when the pain not only has no end date, but also has an imminent promise of getting worse? Then what?
I mentioned last year the medical issues that were overwhelming my husband and me (yep, we got married!). We didn’t have concrete answers in regards to his nerve condition back then, so we were still able to see a glimmer of hope for improvement. The possibility of pain relief was still at least obtainable in our hopeful minds because questions weren’t yet answered. Unfortunately and fortunately (it’s a mixed-bag of emotions, here), we now have that definitive diagnosis of Complex Regional Pain Syndrome. After yet another foot surgery in an attempt to improve his walking situation, James came out of it with seemingly more chronic, daily pain. So here’s what we’ve learned in the last few months that we didn’t know or weren’t told before:
1.) CRPS is not only incurable, but has a 90% chance of worsening and spreading to other parts of the body after time.
2.) There is no medicine on the market as of yet that successfully manages CRPS pain or guarantees any long-term relief. The medicines that doctors typically go for are prescribed on a strictly trial-and-error basis. Some possible treatments can also be super risky.
3.) Forcing yourself to push through the pain is the only way to try and mitigate or slow down the risks of the condition spreading (they think), but the minute you allow yourself to rest is when the pain can get its most excruciating.
4.) Doctors won’t let you just cut your foot off and call it a day if the idea of living your life in constant pain doesn’t appeal to you.
5.) The experts and specialists don’t really have good answers for you because they don’t understand it either.
6.) BUT James doesn’t NEED to use crutches or a foot cast anymore… if he can stand the pain.
So now what? My husband has an invisible disease that nobody fully understands and it has not only become the focal topic of our lives, but it also determines the majority of our actions and choices. We don’t realize how important and integral walking and standing are until the act of doing either incurs unbearable pain. Or participating in a conversation and suddenly being wracked with disorienting and distracting pain, unable to pay enough attention to really “be” where you are. I would never wish this condition on my worst enemy, yet I have to sit idly by watching the person I love the most living with it. That’s a type of pain I never expected I’d have to live with for myself either. For the rest of our lives.
I love my husband. I fully recognize that this awful situation is not something he brought on himself, and I have never and will never blame him for it. But it is certainly something I never could’ve prepared for, mentally or emotionally. I have moments of agonizing helplessness and guilt when I find that I have no offers of advice or suggestions to give James in order to alleviate the pain. I often find myself at a loss for words simply because I know nothing I say can stop him from hurting. That is a type of emotional pain I didn’t even know existed. There are so many different facets of pain, and I’m uncovering a whole slew of them lately. Whether we’re together or apart, I’m constantly worried about his comfort level, wanting to protect him from any possible dangers that could increase his pain, but also trying to take care of myself as well. I morphed into caretaker mode because nobody wants to watch their loved ones suffer – we want to help. But I found that as I desperately tried to find ways to help, usually without success, I was letting the worry consume me so much that I stopped caring about my own well being. Even still, I struggle to find a balance between looking after my husband and looking after myself. I wonder, is this how first-time mothers feel as well – scared and unsure? Although, at least they can learn how to fix and/or improve things to encourage better quality of life for their children, right? Or they can ask professionals who can help too. I feel like this situation is so unique that there isn’t any one thing or person I can turn to for help, and it’s not something that sits well with me. Especially with the thought of the pain spreading. What happens if the pain becomes so intense down the road that he can no longer move, work, live a joyful life? How do I deal with that then? Then I remember that speculating what could happen later doesn’t help the now, so I try and drop it. But as with most things, that’s easier said than done.
I have gained a whole new respect and admiration for individuals with disabilities (seen or unseen). For those of you fighting off illnesses, caring for loved ones who are unable to care for themselves, living with pain – I salute you. You are far stronger people than I am, and I aspire to achieve the same strength. You don’t receive enough credit for the effort you put into creating and living a good life despite any real or imagined shortcomings you’ve been dealt. You face obstacles not with fear or defeat, but with determination. We are only given one life in this wicked world, so no matter what, we have to learn how to love it. Even if it hurts.
I’m learning as I go, and despite the agony we both feel sometimes, I’m so happy James and I have each other for support. And I will do whatever I can to help raise awareness and fund research projects so that debilitating, inhibiting, invisible medical conditions like CRPS can be eradicated. I can’t do everything.. but I can do something.
That’s the thing about pain. It demands to be felt.