Hi there.
Miss me much?
I've been...surviving.
Yeah, sorry. That's it. Not great. Not even good or okay. Surviving. Sounds about right.
And, yeah, I said I'm “sorry.” But I have no need to be sorry. What am I sorry about? Not sorry that I can't and won't answer the standard greeting of "How's it going! How are you doing?!" with the expected "Great! Everything's great!". I'm not great and I'm allowed to express that. I am.
Not that I want to bring everyone around me down and halt a conversation from moving forward with a long detailed explanation of why I'm not, in fact, great. I guess I tell most people that I’m “hanging in there.” But, to people who know me and whom I consider friends or family - therefore they are already aware that I'm not feeling so great anyway - I feel safe and allowed to give at least a small update on how I really feel and what's going on with me.
And, yes, dear Reader. I feel like we're friends. I feel like you care. Otherwise, you wouldn't be reading this. Right? Right.
So, yeah. No. I'm not great. I'm surviving. I live with chronic back pain. Pain so bad that it radiates down my legs. Pain so bad that, even though I can't feel below my knees because of my Spina Bifida, I do in fact feel this pain that radiates from my back all the way down to my feet. Of course, it's much tempered. Below my knees it's just enough pain to notice, not really be bothered by. But I notice it. And that bothers me.
Even at night, sleeping. If I want to roll over, I now wake up from the extreme pain I feel in the movement I'm trying to make. And often my legs even go numb, so that I have to lift and turn myself with my hands. It's an ordeal. And then I'm awake. Trying to figure out which position is the least of all the evils. Left side? Right side? Back? Who knows. Every time it seems to be different.
Sliding out of bed in the morning hurts. Getting up hurts. Walking hurts. Sitting hurts... but not as much. Sitting is best. As long as it's a good, supportive seat. The chair I'm sitting in now, at our computer, is not great. It always makes my left leg go numb. But I want to write and I'd much rather do it at the desktop than typing with one finger on my small phone. Anyway, I hear Sweetie finishing up what she's doing and so I suspect she'll be wanting to take over this space. Soon enough I'll be kicked out and have to settle in to another seat that’s not so comfortable in its own way. Hmph.
Yeah. So I hurt. All the time. It used to be that I had to earn the pain and/or numbness. Walk a few aisles in the grocery store. (AISLE, by the way, is my go to starting word for Wordle. Lots of vowels and common consonants. I've not failed yet at getting the word. You're welcome.) Hike a bit in the woods (easy path, of course) with Sweetie and Hubby. Stand in one place for a long time. Something! But now? Nothing. I literally have to do nothing before my body reminds me, loudly and relentlessly, that I am in pain.
And these memories of walking, hiking, standing... they're from not all that long ago, in the grand scheme of things. 4 years ago? Maybe even 3? And standing! Standing, man. I was the queen of standing in one place. In a time long ago and far away, admittedly, I worked in retail at a large, well known bookstore. And whenever I was assigned to the registers, I was a happy camper. I could stand there all shift long. Walking around behind the counter to retrieve orders for customers. Whatever needed to be done. No problem.
If I was assigned to the info desk, then I wasn’t so thrilled. Then I had to potentially walk around the store, directing customers to their chosen books. That got me tired and, eventually, in a bit of pain. Maybe. I don’t remember. But I definitely remember that I much preferred the registers.
Anyway. What was I talking about? Oh yeah. Pain.
What is it like to be in pain All. The. Time.? Let me see if I can come up with some adjectives…
Exhausting. Depressing. Maddening. Overwhelming. Hopeless. Sad.
And yet, I am generally a happy, positive person. Or at least I used to be much more so than I am now (stupid pain!) And, as I think about my one chosen word for this year - RESILIENCE - I’m trying to think of some other positive adjectives and phrases that have come out of this experience.
Determination. Mental Strength. Acceptance.
It’s a short list, but there it is.
I’ve tried to research others who have written essays on chronic pain. Maybe I didn’t search enough, but I didn’t find much of anything. I specifically remember once listening to the author John Green talk about the aloneness that punctuates chronic pain. I can’t for the life of me find that audio or reading again. But I remember how good it was at defining chronic pain. It basically acknowledged how personal pain is. No one can feel the pain you’re feeling. No one can know exactly what you’re going through. Pain is as deeply personal as it is deeply felt. And one person’s ability to manage aches, twinges, and/or chronic raging pain is very different from anyone else’s ability to manage the same.
I, for instance, believe myself to be able to withstand pain very well. Heck, I’ve been in one form of pain or another for going on two decades now. I’m a pro! And nary a complaint has anyone ever heard from me. Much. Ask me how I am a few years ago and, yes, I was great! You betcha! Couldn’t be better. All the while I was just past experiencing the worst pain ever after accompanying Hubby at the grocery store. Mindset was much more “that was then, this is now”, meaning, sure I was in pain. But it’s over now and forgotten. Moving right along!
But now. Oof. There’s no escaping it. And I complain more. At least to Hubby, anyway. But others see it too and understand. What’s so maddening is that I don’t know what to do about it. I’ve tried it all. Physical therapy (I hate it. I won’t do it at home). Chiropractic (is it doing anything really? It doesn’t seem to be doing a darn thing. And maybe it’s even harming me). Cold laser therapy (huge wast of money). Nerve stimulator placement (well, I tried for that, but we all remember how that turned out.) Acupuncture (oh, how some of those needles stung! And again, no relief felt). Meds (no med, prescribed or store bought has given me anything more than a mild relief). I’ve even recently been to several appointments with a urologist to see if I could resolve any issues in that department so that I could revisit the idea of the nerve stimulator. Crickets… Anyway. The list goes on. All done in a valiant attempt to avoid major back surgery.
And so. Here we are. No resolution. Still in pain. Getting worse all the time. I don’t know whether to sit more and rest, since sitting feels like the least painful thing I can do. Or if moving more is the way to go. Sure, it hurts to move, but being active seems like it should keep me strong and ultimately be beneficial to the whole situation. I don’t know.
To move, or not to move. That is the question. I want to keep moving! I do keep moving. Sure, I now own my own wheelchair for use when we three go on adventures so I no longer have to walk. I’m grateful to have this and enjoy the freedom it gives me whenever I use it. BUT. I am not about to transition to using it all the time. I’m still walking. I’m still capable of getting around in small spaces, taking care of my needs. I’m good to go.
Honestly, I feel like if I start using the wheelchair more regularly, that I’ll never get up. That will be it. I’m done for. And that’s not the life I want to lead. Not yet. I’ve got some good days left in me still before I sit down.
So. Where are we, then? What can I possibly do? Well let me tell ya.
I’m going to move forward with having back surgery. And in my case that means detethering surgery. The very thing I’ve been saying I absolutely want to avoid. Yet here we are. And I’m excited. Well, as excited as I can be to go in for major back surgery that’s known to be risky at best.
But at this point, as far as I can figure, it’s the only option I’ve got.
I was excited about the nerve stimulator surgery. But they don’t want to have me. Fine. And at this point I’ve realized that I don’t want to mask the pain anyway. It’s much better to fix something than hide it. Anyway, my main reason for not having the surgery was because I don’t want to lose any of my abilities. But you know what? I’m already losing my abilities, as in I can’t walk without crutches now. I used to be able to walk around the house without a cane or anything. But now I cannot function without the crutches. So, given that, if the surgery effects me so that I need to use crutches from now on, at least I’ll use them pain-free. Or if I’m put in a wheelchair for the rest of my life, I’ll at least be there without pain. And that sounds just fine to me.
So what’s the next step? I’ve already spoken with my PCP and she’s put in the referral to the neurosurgeon. That appointment is made for later this month. I presume she (Yes! A female neurosurgeon! I love it!) will want me to have updated MRIs done. Once those are done and reviewed, I’d guess it’d be go time. Except that I presume this is considered an elective surgery. So I don’t know, given these Covid times we live in, when I’ll actually have this done. I’m hoping sooner rather than later, but we’ll see.
And that’s it. I’ve made the decision and I’m looking forward to the other side.
The day when I will no longer just survive. But a life where I will thrive!
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