Sunday, January 01, 2023

Can You Hear Me Now?

Testing. Testing.

Is this mic on?

Yeah? Great.

So, listen up.

Every year, for the last several years, I've picked a Word of the Year that I intend to stick by, as I believe it will lead me to all good growth and change. Usually it's a word that encompasses something I need to work on. To make better in or for myself. Something that just says, "this year, it's all about X for me."  A kind of one word resolution, if you will. 

Usually this word will just hit me sometime in early to mid December. No struggling to figure out what it's going to be. No "making" a word fit. It just always does. Fit. Without question. It just is there, and that's that.

And so it was this year. No hours of contemplation. No worrying that this year I wouldn't think of a word. No trying on different words to see how they felt. Nope. It just came to me, just like it always does. 

For this year, my word is VOICE. 

As in, I want to learn to use my voice. Out loud. I know I am very comfortable with writing, and with all my practice there, I dare say I've gotten pretty good at it. Yeah, my written voice has a strong game. But my speaking voice, that is an entirely different story.  

I am the youngest child in my family and the only girl. My three older brothers have always been there to protect me. I am physically disabled, so my parents have always been there for me, to hear whatever the doctors have to say, to make decisions about various procedures and healthcare paths for me as I grew up, and to all around take care of me. They have helped me along whenever I've been confronted by people needing to know, or just plain wondering, what my deal is. 

For much of my life, I've sat there quietly as others work out just how things will be for me. Sure, I'd talk a lot at home about what it was I wanted or how I felt (teachers constantly telling my parents that I'm so quiet in school, leaving my parents to wonder why the same talkative kid they sent in wasn’t the same one who showed up in the classroom), but when it came down to sharing info, telling about decisions made, etc., it was always my parents verbal say-so while I quietly sat by.

“Of course your parents took care of you, spoke for you, and made major decisions for you”, you’re probably saying. That’s what parents do! They’re not going to let a little kid take on all that. Kids can’t and shouldn’t have to deal with all the big grown up decision making, obviously. “You got it no different than any other kid”, you’re saying. And you’re right, in a way. Maybe it was just the elevated number of doctors appointments I had compared to the typical kid. The sheer number of times I found myself in serious situations where really big medical decisions had to be made for me… or how often I found myself in new situations with new people having to learn about me and how to take care of me… my parents were constantly looking after my needs while I learned to sit back, not worrying about it, and to show up and everything will be just fine. 

So. Yeah. I grew up very well taken care of and very, very quiet in school. All through school, including college. Really shy, really quiet when I did speak, easily embarrassed, did not like attention drawn to me at all. The whole nine yards.

And now, Hubby and I, and Sweetie when home from college, live with my aging parents who are both now hard of hearing. Both should be wearing hearing aids. Both don't always do that. And I'm naturally quiet when I speak, even if I don't think so myself or am trying not to be. So, whenever I do say something, my parents often can't hear me and need me to repeat. Or they do hear me occasionally, but it seems to be mostly at the times when I make a not terribly interesting side comment to something said on TV or whatever. That is, nothing of any real importance, but they heard me say something, so they ask me to repeat, which feels incredibly dumb to me to have to say again, loudly, something that really doesn't matter at all in the first place. Or Dad has commented more than a few times, after I tell them both something that, "I don't know what it is... something about your voice... I can never hear what you say. I can hear you're saying something, but I can't make out the words." Yeah. I just love knowing, over and over, that something I really can't help much about myself is making communicating with my Dad ineffective. Or, with my mom, I'll happen to make a bunch of noise, not even intending to, as I walk by, either with the clank of my crutches, or me saying something at normal-for-me-volume-level to someone else, or me banging around something accidentally...whatever... and my mom doesn't even bat an eye, look up, acknowledge that any sort of commotion is going on at all right now. I walk right by without notice despite any noise I'm making, vocally or otherwise, and she just doesn't hear. So, given all this... I mostly just don't talk a lot to them. Hubby and I work opposite shifts, Sweetie is away at school. I keep to myself and quietly do my own quiet thing. 

Yada, yada, yada... to this day... and lately, I've been noticing more and more...others still speak for me. Which has largely been just fine with me. Or friends and family just know that I'll give a brief answer without much exposition, even when you might expect there'd be some. And that seems fine for everyone, because that's how they know me to be. But, the thing is, I am noticing it more and more. How I'll bring up a family anecdote and intend to tell the whole thing, but Hubby or Sweetie will say, "oh, yeah!..." and go on with the rest of the story, as I listen along, entertained, along with everyone else. Fine. Whatever. Other people are better story tellers than I am anyway. Go on. Tell it...

The tricky thing is that, sometimes I really do want help when I'm asked a pointed question. Especially dealing with anything to do with my surgery and continuing healing and rehabilitation from said procedure. It honestly is tough for me to see in person all the people who know about my surgery and are rooting for me and have, I think, been thinking that surgery = instantly improved me, with no more pain, no more need for crutches, etc. etc. And that... just hasn't been the case. I'm still working on exercises every day, new pains that are showing up, remaining old pain, a lot of what the outside world would still see as the same as how things were for me before. And it's difficult for me to put hope and relief into my voice, with my verbal explanations of just how things are for me now, explained well and with ease. So, with that, for example, I eagerly look to Hubby to help me tell others just how things are for me right now. After all, he (and Sweetie) from the outside looking at me can and have observed positive changes that I'm just not always in a brain space to realize all the time. So, yes. Please help me with this. Speak for me, because I can't verbally communicate all the positivity that this surgery has provided me when I know there is also so much more to work on and strive for.

And, not for nothing, but... we have our Sweetie who's on the autism spectrum, has ADHD, and has a touch of anxiety to boot. Because of who she is, she very often (read: almost always) thinks that whatever she's thinking and feeling about whatever is something Hubby and I just automatically know. And this is most definitely not the case. No matter how often we tell her we can not possibly know what she's thinking unless she tells us, even if she comes to understand that for this time around, the next time will happen. And I'll inevitably presume out loud that she must be feeling such and such way, but of course, she's not. So, Sweetie being Sweetie, she'll probably snap at me that I'm totally wrong and that "obviously" she's feeling or meant or whatever this instead. And so... all that over and over kinda makes a person not want to presume out loud anything about anyone. And so, I tend to stay quiet. I'm a decent listener. I'm just not a great giver of advice or other soothing comforting conversation. (To be clear, I never really have been. This is not Sweetie's "fault" by any means. I love who Sweetie is and do not deny her being her, whatever that may mean. It's just that I don't get much practice being an effective soothing, comforting speaker around her terribly often. And so my quiet ways continue.)

And so! Things are about to change! 

Watch out world. I'm going to start using my voice. I may not do it well. I may still even ask for help. It's going to take me some time to get good at it. But my aim this year is to get better at it. Speaking up. Contributing to family conversations. Relaying stories. Speaking my mind on various issues. Saying how I'm feeling. Saying what I need. What I want. What I think. Never mind the discomfort it may bring to myself or others. I have opinions and stories and things to say. And y'all gonna start hearing them. Not just hear it in my writing, but IRL. No more quiet me. At least that's my goal. It won't be overnight. I'm sure I'll fall back into my "regular" quiet ways from time to time. I may think, after some trial and error, that this wasn't such a good idea after all.

But. It. Is.

Everybody has a right to speak their mind. Everyone's voice deserves to be heard. 

I've been quiet waaaaayyy too long.

It's time you heard my voice. Out loud.

Do you hear me now? Good. 

Sunday, October 02, 2022

The Core Principle

Have you seen Selma Blair on this current season of DWTS?! Talk about someone who is working on overcoming the physical challenges in their life. Selma has Multiple Sclerosis, leaving her with occasional slurred speech, the need to often walk with the support of a cane, and weak muscle control, especially in her legs and arms. And yet, she's saying YES to DWTS, getting out there every week to give it her all. At the time of this writing, the season is just starting, so she's only had 2 week's worth of performances. But, man, have those performances been awesome! She is doing great and, for as much as I'm not thrilled with some of the changes that have happened to DWTS over the last few years or so, I am very happy to watch every week to cheer her on and watch her abilities take command over whatever physical challenges she may deal with. Truly inspiring. 


As for me, about 2 months out from my last post, and 3 months out from my surgery this summer, I'm happy to report that I am doing great too. Especially these last 2 weeks or so, I and my physical therapist are really starting to see some big strides in my strength and general abilities. Specifically, I've brought my walking stick with me to a couple of sessions. The first time was maybe 2 or more weeks ago? Just to give it a shot and see how I can manage beginning to walk again with this, instead of the forearm crutches that I had to resort to about a year and a half prior to my surgery. The pain in my back and legs was getting too great and, it was thought by my chiropractor, that the way forearm crutches would force me to stand and walk (leaning forward a bit) would help to ease the pain. This was because the way I was walking with my walking stick was to increasingly lean back farther from the stick, belly out. The more I hurt, the more I walked in this weird way, trying to escape the pain, but in reality only making it worse. Long story short, the forearm crutches are basically better for me, do force me to walk either straighter or at least leaning forward, not back, and basically give me more support all around.

But, I am stubborn and want to get back to my walking stick. I told this to my therapist from the get go. She didn't see any reason why, with a little work and practice, I couldn’t do this. So I brought it to PT.

That first attempt there (yes, I had tried a few attempts at home even before this) was... not so great. She had me walking in a skinny hallway with a support bar along one wall. And, with that bar being so easily accessible, I kept reaching for it even though I didn't want to. And my right leg, which has always been my more dominant leg, was now the weaker. After taking a step with the left leg, the right was just dragging itself through to finish the step. As you can imagine, it just wasn't pretty. Or useful. Or at all correct.

So she gave me some different exercises, on top of what I already do, and I focused on strengthening my legs more, lifting that right leg, and making considerable "steps" towards improving my steps, so to speak.

Well, this past Thursday I brought my walking stick back to therapy and tried again, this time asking if I could try in a not-so-cramped hallway without a safety bar for added support. Sure! Lots of hallways I could pick from. So I picked, and I steadied and readied  myself, and I went! Picking up my right leg to complete a step! Sure, it's still not the prettiest thing ever. I still depend more on my left leg, and kinda kick my right leg through. But I engage my core, I don't twist my torso (unless, as seen in other tries, I’m tiring out) to try to force things to happen, and I make, literally, good strides. My therapist was so impressed with the improvement from the first try with her. She was smiling from ear to ear and told me that was "so good!" She told me I gave her goosebumps with how well I did. Wow! Am I feeling good about things now!

This weekend, I've been practicing more at home with my stick a bit. Not 100%. Not even near that. But sometimes. Just giving it a go, if I have to go down to the bathroom, say. It's good. It's feeling better and better. It's coming along, step by step.

I have also learned first hand the importance of engaging my core for another basic life motion - standing up. Last weekend at church, when we all stood up for the first song, I stood in my old usual way. The bad way. Basically pushing my belly out, arching my back inward, and forcing myself into a standing position. And that hurt! Not a sharp pain. But a really sore, tight pain that hung on as I stood there singing. But then! For the next song we stood to sing for, I remembered to engage my core, pretending to bring my belly button back to my spine. And that was just fine! I stood up pain-free, no problem at all. Huh! I understood right then, if I hadn't already, how very important it is to use your core in making motions with your body. Everything is truly connected and I really got how well things can work if only you use the correct muscles to do what needs doing. And ever since then, every time I stand up, I engage these same muscles and stand up much, much more easily and considerably less painfully. Yee haw! 

Oh! And Poi! Poi, man. (Speaking of church) we were at our church's annual end-of-summer retreat early in September and learned the beginning moves of this beautiful circus art. Hubby really enjoyed himself and got into the whole thing. I did what I could sitting, and eventually stood with one crutch, twirling poi with the free hand. I could tell right away that this was definitely an exercise that engages one's core. And I told our friend/teacher as much, saying that this really seemed like a fun exercise I could incorporate into my physical therapy exercises. It could help me improve the very things I need to work on, like quad strength, core muscles, and balance. She said, absolutely! Yes, poi could really do wonders for me. So I’ve been practicing, now standing with no crutches and twirling poi in both hands. I can only do it for a very few minutes right now, but that will increase with practice. I also think I’m going to invest in her circus arts book for kids, as well as some other poi-specific beginner videos and lessons. Why not have a little fun while also making my body stronger and more able to conquer the tasks that need conquering?

Another improvement I'm seeing is that I can now walk small distances without my leg braces. For instance, after a bath to the bedroom. Since my pain has increased, pre-surgury, I've had to resort to crawling when not wearing my braces, or even with my braces, but without access to my crutches. The pain was too great and my legs had become so weak that I was no longer able to hold myself up comfortably to get myself where I was trying to go. So I crawled. But this week, after a bath, I gave it a shot to walk the (very short) distance from the bathroom to the bedroom. With the support of the wall, of course (I don't, and won't really ever, have good balance without my braces, considering I can't feel below my knees or access my muscles there.) And I did it! No problem! Wow. That felt really good too. What an improvement! Yeah. Not that I ever make a practice of walking without my braces. But in those instances when it's the end of the day and I have to go a short distance without them, it appears that I can now make this happen by walking,  just like I did before.

And. lastly, Hubby and I went to Target maybe a week or so ago, to pick up some things to include in a care package for Sweetie (she's off at college! And loving it! And doing so well!) Typically, since the vast increase in pain I've had to manage, (all of these changes I've mentioned to my lifestyle due to pain, BTW, have taken place pretty much over the last 3 years I'd say) I turned to riding the provided electronic riding cart at this store. But this time, Hubby said I was going to walk! "But, the things we need are in the far opposite corner of the store!" I said. "You can do it," he said. "And we can sit and rest if you need." And so, I did it! I got to the aisles we were after, helped pick out the items we wanted, and then started heading back to the checkout. It was on this journey back that I knew I really did want to sit and rest a bit, which we did. And then I let Hubby handle the checkout line, while I sat to the side again. But I did it! And at no point did I feel winded or in lingering pain.

In fact, that "not feeling winded" thing? That's new too. Previous to surgery, I either, A) wouldn't walk at all, preferring to break out my wheelchair we bought during this time of increasing pain, or B) I would walk, but feel incredibly "riled up", tired, heart racing, and generally winded after the experience. But now? Nope. I'm good. I'll walk whatever distance, sit down when I get where I'm going, and feel totally fine from "all that exertion." Building up my stamina, baby! Getting so strong.

So! That's it, I think. I'm doing great. Sure, I still have pains. But they are different, less, and tell me more about how much I'm pushing my strengthening body in a good way, rather than stressing my damaged body in a bad way. 

PT is still on, for now. But my large chunk of sessions they gave me at first is all used up, and now I have been given a couple of smaller chunks of sessions, after which I have to have a re-eval. My therapist then submits all sorts of documentation, proving that I'm making great improvement with therapy, so therefore I should continue therapy! But not so much improvement that the insurance just says, "Great! Then she's done, then, and doesn't need anymore stinking sessions." Insurance is very stingy, is what I'm saying. But we'll see. 

Even when I can't go back to therapy anymore, though, I will still do my exercises at home everyday and continue to push myself to get stronger and stronger still. I feel the determination now and I will prove to myself that I can get better. I just have to put in the work. (I think my PT sessions historically, all with the goal of decreasing my increasing pain, have always left me feeling like the improvement wasn't coming fast enough, or I had just given up that there even was improvement to be had at all, that I was always just going to be in pain forever, it was inevitable, so why even bother. Well now, after a specific successful surgery to fix this specific problem, I do believe I can and will improve! So there!)

I'm movin'. I'm groovin'. Faster and stronger every day. I can. I will. Just watch me. 

Sunday, July 24, 2022

So You Think You Can…

I am fascinated by the mind/body connection. I listen, enthralled, to stories of people whose bodies have betrayed them in one way or another. Either through disease, or accident, or whatever trauma has taken control of their lives and their physical well-being. Intrigued to find out how practices such as hypnosis, or visualization, can aid 10-fold in the physical healing of a body. Yes, do the physical therapy. Do the physical work it takes to make your body physically stronger than it once was. But also take the time to literally see yourself doing what it is you want to get back to doing. It makes a world of difference.

You’ve heard about that study where a group of students were asked to come to the gym and take a number of basketball free throws? As a group, having not really been particularly sporty, nor having had any practice, they only did fairly well at this task. Then they were divided into 3 groups.

The first group was sent away and told not to do anything towards improvement in this for 30 days. No practicing, no nothing. The second group was told that they needed to practice for 30 minutes a day, every day, for the 30 days. And the third group was told to take the time every day to only visualize themselves back at the gym, taking - and making - the shot. No actual practicing. Just the visualization exercise. 

Well, at the end of the 30 days, when tested again, the group who did nothing was just as successful- or not - as they were before. No improvement. But both the group who practiced, and the group who just visualized, increased their success at making baskets by virtually the same percentage! 

Visualization works. I'm tellin' you.

I am also completely in love with watching shows featuring dancers. Especially So You Think You Can Dance and, to a lesser degree in recent years, Dancing With The Stars. Man! The human body is just so fascinating! What a person can learn to do in a week, or less, of intense training and practice. It’s just incredible. SYTYCD does start with contestants already trained in particular styles of dance, yes. But then those dancers are asked to perform in styles completely unfamiliar to them. A tap dancer told to learn the waltz? A crumper performing a modern dance piece? Week after week these dancers train and learn and practice and then perform. Moving their bodies in beautiful ways, just as if they’ve done this their whole lives. 

I’m not trying to discredit the hours upon hours they put in, working their butts off to get to that final performance. But they do only have a week to get there. That’s it. And somehow, every week, they arrive at their performances in beautiful, awe inspiring fashion. 

What I’m saying - the human body is an amazing, complex piece of machinery, able to do so much more than even its keeper might ever think possible. Whether through hard physical practice, hypnosis, or visualization - or all of this together - a person can break through so much pain, stiffness, and physical struggles to ultimately come out movin’ and groovin like the sleekest of top notch dancers, runners, basketball players, or whatever physical prowess it is you have your mind set upon achieving. 

So how does this relate to me? Hello there! Please let me introduce myself. You may think you already know me. I’m Amy! Of course! Yes, this is true. But now I’m post-surgery Amy. You may be more familiar with my pre-surgery persona. 

I gotta admit, I thought my pre and post surgery selves would be instantly and wondrously vastly different from each other. Most noticeably in the area of pain vs. no pain. Two totally separate people! And I thought that pre-pre surgery self, capable of easy movement with little-to-no-pain-or-numbness, would thunder back to me like an avalanche. Just like giving birth. It hurts like hell, but as soon as it’s over, it’s forgotten. Replaced by baby snuggles and love. The same for me, right? Surgery = get up and start getting on with my life. No more leg or back pain. That chapter is over! Time to start getting back to living pain-free.

Uhhh… well, not so much. Alas. My legs still hurt: My back hurts if I sit in the wrong way in the wrong chair, for too long. Getting up from a seated position is still the worst, although maybe slightly better. It all still feels much the same as before, honestly.

But, I’ve learned something.

I’m doing Physical Therapy now and, in going through those motions, I now see how incredibly weak my legs have become. And, more interesting still, I see how much weaker my right leg is compared to my left. My right leg has always been my stronger, more dominant leg! What the heck happened to get to this point, where it is plainly presenting as weaker than my left?! 

I’ll tell you what happened. My pre surgery back pain increasingly got worse and worse, encouraging me to walk and move less and less. My main goal in life, increasingly so over the last 3+ years, was to get myself from one chair to the next. That’s it. So of course my legs got weaker and weaker. My quads, which is all I used to have to keep me moving, are now shot. Now it’s my upper leg muscles on the insides of my legs that are doing all the work. So, fine. This is a main goal of PT. Build up my quads again. Get me back to 3+ years ago Amy as best we can. 

Still. It’s a bit disconcerting, disappointing and dissatisfying to experience all this when I thought for sure this surgery was “the answer” to all my woes. I know the surgery was a success. My surgeon did, in fact, detether my spinal cord, freeing it up to hang loosely as it should. It no longer stretches or pulls or causes me pain in this way. So any remaining pain comes from something else. Like weak muscles. Weak muscles can be built up. That is what my focus is now. 

Historically, I have hated PT. I’m fine to do the exercises when I go, but I’ve been terrible about doing the at-home regimen. And the last time I went, a few years back, even though I liked the therapist herself, she just had me repeat with her what I was supposed to be doing at home. Nothing really extra. But now, I really love my therapist and see that she is pushing me hard during our sessions, in conjunction with the different things I’m doing at home. And I am doing my at home exercises every day as she has laid out the plan. Plus! She is taking time each session (twice a week) to massage my lower back, particularly with the goal of keeping scar tissue in motion. Not settling in one big, spine-tethering clump. This is my favorite part of our sessions. Afterwards, my back feels much less pained for several hours. So much so, that I tend to forget to get up every 30-45 minutes to walk around a bit. My mind isn’t on my back. I forget. But I do ultimately remember and get up to move as often as I can. "Motion is lotion", after all, as my physical therapy location likes to profess.

And by the way, I have noticed now that I generally do want to walk and move. As opposed to my before practice of moving from seat to seat. So, there’s that. 

I’m also interested in this whole mind/body thing, taking the time to picture myself walking and moving easier, much more pain free. I personally have also had the experience of speaking out loud whatever I wish for, and having that come to fruition. Several times in my life, I’ve spoken words out loud for what I want, and by and by, whatever that is I want, happens. So - I am speaking my goals. I am visualizing my movements, I am physically doing the exercises to get me to where I want to be. 

Whatever it takes. I’m there. I’m doing the work - in whatever form it takes. If I can think it, I can do it. That’s really been the way for me my whole like. Screw the doctor who saw my X-rays (but not me) 20+ years ago and just decided, “well, clearly she’s in a wheelchair.”! No, I’m not! I wasn’t then. And I only use one now when needed because of pain and, it turns out, weakness. But, excuse me sir, I can do whatever it is I want! Always have, always will. It may not be as effortlessly as for you. It may take me more time or practice or just having to do whatever thing in the way that works best for me. But I get it done. To watch me do a thing, one might think, “oh, if only she’d just let me do that for her, it would make it so much better for her.” But, no. I do things in the ways that would best for me. To do things the way I do them doesn’t feel challenging to me. It’s just the way. No big deal to me, even though others may perceive it as more challenging than necessary. We all do things the best way we know how. I’m just living my life. I’ll get what I want done. I promise. 

Anyway. Motion. Vision. Practice. Proclamations of goals desired. Adaptation. All of this working in conjunction. Whatever it takes to meet my goals, I’ll do it. I’m like the Little Engine That Could. I think I can, I think I can.

And I will.  

Monday, February 28, 2022

An Open Letter to…

I wrote the following the other day to a couple of old friends who happen to also be living with chronic pain. We 3 have recently kind of formed a little support group of sorts for each other as we deal with what it is we each live through. As I wrote this to them, I just typed. I didn’t read it back or self edit or anything. Now, for this blog post, I have taken that initial spewing of emotions and cultivated it into something more. Edits here, additions there, grammatical fixes everywhere. And now, I submit to you, the following…


I don’t know what I want or what I’m looking for. To never bring up my chronic pain publicly feels like I’m not being true to myself. Like I’m sparing others from having to take a second and remember that it’s not all rosy over here for me. Or, more probably, I feel like, yes, I actually have brought it up enough already. I should be mindful that it’s not all about me and no one has to keep hearing about it - they know already. God forbid I upset anyone else because I keep talking about how much my situation stinks. I wouldn’t want that. Of course. 

And that leads me to the realization that I really don’t want my writing to be all-pain-all-the-time because… what’s the point in that? It keeps me focused on it, and I get people to remember for a second what I’m dealing with, then they mindlessly (or genuinely, I don’t know) give me a “caring” or “sad” emoji before they continue scrolling on their merry way, soon to be distracted by a funny cat video 4 posts away? So what? 

No one gets it. No one could. Okay, not no one. My husband and daughter get it probably as best anyone could without being in my shoes directly. And I feel like you both get it, too, as you manage your own chronic pains and conditions. Anyone who’s lived with severe chronic pain knows what it’s like. But still. As I’ve said before, pain is a very personal experience. A very lonely, isolating experience. You know what it’s like for you. I know what it’s like for me.

Still, the fact remains… I fancy myself a writer and one of the best ways I know to get my emotions out and to put everything in order for myself is through the process of writing. It helps me. But I just, I guess, I also want to affect people with my writing as deeply as I can to let them know exactly what it is I’m trying to convey. And people everywhere with chronic pain - I want others to know. You are not alone in your solitary journey. To live vicariously through my words so my co-sufferers realize they’ve got a compadre in me. Or for those not in a similar situation, to know what it truly means to live this way.

This is not to say I want everyone to actually feel my pain. But just to understand enough about how this shift in my daily life experience has changed me and what it takes for me to get through a day. How I want to keep as active as I can, but how difficult it is for me to just stand up and walk down the hall. How when I say I’ve got chronic lower back pain, what I really mean more times than not is that it’s my legs that burn with searing, radiating pain. But that my legs also often go all pins and needles as my (literally) tethered nerves try to sort out exactly what’s going on after a big adjustment of position. How so much of my brain space is taken over by this situation I find myself in. There’s no escaping it. And therefore, because of all this, how so much of my brain space is absolutely not dedicated to interacting with people and their own problems (or joys), their passionately felt soap box speeches, their rhetorical questions that yet still seem like an answer is in hot demand. 

Or even just polite, casual conversation. To gather with and be amongst friends and chime in on a conversation about whatever. My brain isn’t there. I’m exhausted. Happy to be amongst friends, of course! But simply not able to contribute meaningfully to any friendly banter going on. Everything else seems so trivial and like someone else’s thing to deal with. Not mine. I’ve got my own thing and it’s just about all I can handle, thank you very much. And, no, I don’t want to talk about it either. I don’t know what I want, like I said at the start of this whole thing. 

And the funny thing is, it’s not that I’m even consciously thinking about my pain, my pain at any given moment. I honestly don’t feel like I’m sitting around feeling sorry for myself all that often. Especially at work. I love my job and my coworkers, and my chair there is as comfortable as I can get. I’m on the phone all day and my mind is distracted. But at home on weekends and evenings, all I’m really able to do these days is sit around. What else do you expect me to do but think about it? So when I get to writing and considering why I am the way that I am… this is what I come up with. 

Anyway… I also don’t wish for others to only “get” the bad parts of what I’m dealing with. As someone who likes to write, I of course want others to be affected by my words no matter what my subject matter and the emotions surrounding it. I want to evoke all emotions as they apply to whatever I’m writing about. It’s just that, right now, this is the big news for me and what I don’t necessarily want to focus on in my writing, but what is choosing me as its writer. 

Phew! I’ve been wanting to blog about this, and tried to with my last post earlier this month. But I don’t think I did justice then to what I want to convey, nor do I feel like I could ever do justice to it. How do I choose just the right words and put them in just the exactly right order to make my readers understand what I want to say…to feel what I’m feeling… All of it?! The frustration, the anger, the bitter sweet nostalgia for all I used to do and no longer can? The way I feel so incredibly disabled in a way that I never have before, even though - to the outside world - I have been disabled all my life? But that label has never stopped me before, you see. I’ve walked, jumped rope, skied, shot hoops, hiked, traveled both by myself and with others, attempted roller skating, ran, driven (and still drive a regular automatic transmission), carried a pregnancy, given birth, raised a child, and on and on and on. My being disabled by Spina Bifida has very rarely, if at all, resulted in my feeling disabled.

But now. Now! I am the very picture of disabled. I am quite literally not able - sidelined, hampered - from doing physical activity of almost any kind. Even just standing in one place. Even just getting out of bed, or rolling over while I’m still in bed. Anything I do causes or exacerbates pain. Period.

Sitting or resting is the closest I can get towards pain free. But I assure you, it is not pain free. Getting up from a seated position is probably the activity that causes the most pain, followed by an ease up of said pain as I walk it off a bit. But continue that walking activity too much (like, 2 +/- minutes) and the pain and leg numbness ramps back up again. It just always is. And always keeps me down. Physically and mentally. Sigh

I’m sure this feeling of disabledness I am dealing with is a very large part of why I fight so much against it and against receiving help of any kind. Mind you, I do ask for help, and am asking for more and more of it every day. But please don’t ask me if I need help. No! I’ve got this. I’ll let you know if I need anything. But, please, let me be the judge of this. 

Okay. I’ve written enough here. I’m just going to hit “Send” and get it out there. I’m writing to you since I know you can relate. And I’m considering turning this into an actual blog post. But first and foremost, to you both. Before I do something dumb, hit a wrong key, and lose it all. Yeah. Okay. That’s it. Thanks for “listening.”


Editing to add, and sharing again today, June 16, 2022. Tomorrow is my spinal cord detethering surgery. One more day of pain. Then, of course, pain and discomfort of post surgery and a long recovery. But then, little by little, the feeling of relief. Finally. Literally intensifying for about 18 years. Last 3+ years being the absolute worst and something not able to be ignored. Thanks to all who have seen me through this and will be there through my recovery and beyond. I don’t have the words to thank you enough. I don’t have the brain space to write a whole new post. I just want to share this again. All this pain is soon to be gone, as I can only hope that surgery will go well and do the trick. Thank you all again. It’s a long road ahead. Physical therapy to help me rebuild what I’ve lost, as much as it can be rebuilt. Here’s hoping. So grateful to and for you all. Overwhelmed that our community would even think to start a GoFundMe for us. And what an amazing outpouring we’ve seen already. Thank you all. We love you and feel so humbled to be among your beloved community.


Friday, February 04, 2022

I Will Survive. And Thrive!

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! 

Thursday, April 08, 2021

This is Me

I yelled at my chiropractor today. Like, really yelled. 

Now, I’m a quiet person, and those who know me are probably thinking I don’t even know how to yell. But I did. 

I didn’t yell in anger, mind you (well, kinda.) She was yelling at me... from literally 3 feet away, maybe... out of excitement... over my crutches. 

And I couldn’t take her volume, okay? 

I mean, I knew this was going to happen. It was the first time she’s seen me since I’ve started using the crutches and she all of a sudden realized I had this different mode of mobility (and she was the one to suggest them in the first place.) And, like it does when she’s excited about anything - her voice volume increased exponentially so that she could “properly” express how great I looked! Wow! Look at you! And everything so exciting and wonderful and amazing. And she’s standing right there, using her BIG outside voice, not across a large gymnasium or something, but right there, and I just found myself uncontrollably matching her volume level to let her know, “YOU’RE LOUD!” 

And then she quieted down. And I apologized. And life went on, we had a lovely conversation, I had my adjustment, and all is basically well.

Except that it’s several hours later and I still can’t believe I childishly yelled at my chiropractor like that.

But, man. I really can’t believe how incredibly LOUD she got/gets whenever she’s overly excited. 

And, really. Geez. From my perspective, me using the crutches is so completely not that amazing or wonderful or something that makes me feel (emotionally) great or anything. Sure, my pain is eased a bit, which is the whole point of using them. So, yah, yay. But, from my stance on things, I in no way feel less disabled even with my pain lessened. I actually feel more disabled when using them. 

Sure, my posture while walking is way better than it was than with just the walking stick. But I, as the person doing the walking, have never really felt like I’m walking in one particular way over another. I feel like just using the one, cool, wooden walking stick that Hubby lovingly crafted for me (anyone can use a walking stick, just because, ya know?)  just innately makes me look way less handicapped than I do clunking around with the 2 noisy, clanky, cold metal forearm crutches.

Even using regular under-the-armpit crutches wouldn’t make me feel so - other. People use regular crutches all the time when they hurt their legs or feet. It’s a temporary thing that will correct itself eventually. No big deal.

It’s just something about the forearm crutches, though, that indicates, “that person is disabled. Different. Other. Someone to be careful around. Someone to try to not stare at. Someone to try to act normal around, like ‘nothing to see here, folks.’ But they do wonder and stare and probably want to ask questions, but that would be rude, so they just continue trying to act normal and casual and like everything’s the same as it ever was, no big deal. 

But, really, it’s a pretty big deal to me. I feel like people I know who used to feel comfortable around me, now look at me wondering how to just be, like they used to. And for people who don’t know me at all, that just see this person maneuvering around with these clanky crutches, well... they’re stepping aside, giving me a wide berth, telling their kids not to stare, shushing their questions, trying to be as natural as the day is long, no big deal that an “other” is invading their space. 

Yeah. That’s how I feel. In a nutshell: like everyone is staring at me while trying to act like they’re not. Like everyone is trying to be careful around me, while trying to act like they’re not overly concerned. Trying to act casual and relaxed while clearly they’re at least a little uneasy in my presence.

And all that, to me, makes me feel invisible and other. People try to act like my presence (my crutches) is no big deal by just ignoring the fact that I’m there at all. Or smiling at me quietly while they don’t say the thing or ask the question of me that’s running through their head.

Or, on the other hand, I don’t need or want people to get overly excited for me and want nothing more than to talk at me about how amazing this is and isn’t it so wonderful?! Yeah. Also not great.  

I know. It’s complicated. A few people I know even really do make me feel totally fine and chill, like nothing’s changed at all. I’m so happy to have these people in my life.

And I know some people who know me who are reading this are absolutely thinking this is ridiculous and absolutely not true and all in my head and I should not now, not ever feel this way. Geez! Really, Amy! Get over yourself!

But it is how I feel. I’m the one with the disability. I’m the one with the diminishing abilities. I’m the one trying to adapt to using new aids to help me keep as active as I can. And this is the way I feel. This is the way using these particular crutches make me feel. It’s my truth, even if it’s totally unfounded to everyone else, totally not how anyone else is really perceiving me at all. It’s the way I feel. And to tell me to not feel this way, that I shouldn’t feel this way, that it’s ridiculous for me to feel this way - well, that’s just not fair of anyone else to say. No one else is me but me and I’m allowed to feel however I do. 

No one is going through the particular physical pain and the changes and the adjustments I’m going though but me. Sure, others in my little world have their own adaptations to make regarding my changes, and they have every right to feel however it is they feel about that for themselves. But I’m experiencing this in the one unique-to-me way that I am, the only way I can, and that’s that. I won’t apologize or agree that I should get over it or acknowledge yet that I’m making a mountain out of a molehill, or anything. This is how my world feels to me right now. It may very well change. I bet it will, with time. But for now, this is it and that’s that. Full stop. 

So when my chiropractor suggests I give forearm crutches a try and I tell her I used them years ago but I hated them... and she doesn’t even ask me why I hated them, but I can surmise that she thinks it’s just because they were too heavy or something... and then she gets way, way over-the-top excited (excited for me) to see me use them and look so good and, wow!, isn’t this so wonderful?!... well, really, it’s not. Not so exciting. Sure, yes, helpful for the pain (although now I have different pains, possibly worse, in my legs at times. But that’s a different story), for which I am very grateful. But otherwise? It’s a lot to unpack for me. It just is.

Anyway. I’m sorry I yelled at her. But it needed to be done. Not only to quiet her down, but to make myself be heard. 

I am grateful she listened to me. Thank you for listening, too.

Sunday, March 28, 2021

I’ve Been Cancelled

Hi there. Thought I’d check in. I know it’s been way too long. Wanted to say... well, not enough about hardly any of all the things swirling around in my head. 

But y’all deserve at least a bit of an update. I mean, if you’re a friend of mine on Facebook, you may recall that I’ve already reported this. But for anyone who happens to read this and hasn’t otherwise gotten the news...

I did not have my nerve stimulator trial. Nor will I have it, ever. 

I know, right? Shocking. This was not my decision. And I found out 2 days before I was to have the procedure that they were cancelling it. Why, you ask? Because I had - I have, I always have - a UTI. And that infection is likely to lead to infection where the leads are placed into the spine. Even if they treat and cure an infection right before the procedure is done, the next imminent infection will cause the same threat of infection in the area of the leads. And so on and so one.

And what makes this all the more maddening is that I told the doctor about my history with UTIs! Back in September when I was theoretically prepping for the procedure to happen in November. He said I would have to get bloodwork and a urine culture done ahead of the trial and he said jokingly, “So don’t get a UTI!” As he waggled his finger at me. Well, I told him, I always have a UTI! Like, literally always. A urologist told me semi recently that if I am ever randomly tested, it will always come back showing infection. It’s just who I am as someone with Spina Bifida. It’s common for us all in this community. the time, he was like, Oh. Well, maybe if we can get your PCP to sign off on this and approve you going forward, we can still do it. 

Okay. Good. Okay. 

But then here we were in real life and my test comes back showing a “raging” infection and even though my PCP did talk to the doc and try to move things along, he cancelled it. His nurse - the person I’d mostly been talking to these last few months - called to tell me so. And she said he (the doctor) definitely wants to talk to me and will be calling me himself to discuss what other options there are to look at for me. But, for now, he at least wanted her to call and say we’d have to cancel. Not just postpone, mind you. Cancel all together. Because if I’m always likely to have a UTI, there’s always likely to be a threat of infection at the procedure site. 

And here we are a couple weeks later, and he hasn’t called me yet. And I don’t expect he ever will. Done. This and all other options with him are done. He told me last June that the “only” option for my relief of pain was this nerve stimulator. So now that’s off the table. No other options with him. I’m not about to call him. I’m sure he won’t call me,

Maddening. Frustrating. Sad. Extremely Disappointing, depressing, and disheartening. Grrrrr.... 

But! My chiropractor (whom, honestly often makes me angry, herself, in various ways) had suggested something that’s turned out to be useful in the midst of this latest kerfuffle. She suggested I break out my old Canadian crutches (that I hardly ever used and hated so, so much), because they will force me to walk with a different/better posture than I currently do, thus taking pressure off of my back and legs.

Well, I couldn’t find my old crutches, but I ordered some new ones. And they are pretty sleek. And, oh my gosh, do they work! I’m feeling considerably less pain as I walk and, according to Swee and Hubby, I’m zooming around with them like I haven’t zoomed in ages (and unlike the Zooming we’ve all been doing way too much of in this pandemic lifestyle we’ve all gotten used to.) what a relief! Really helpful -more than I ever thought they’d be. 

So, there you are. I will not be cancelled! You can try to break me, but I will not be broken! I will always find a way. Get back up, dust myself off, and try try again. Something has got to work. There is always an answer. You just have to wade through a lot of crap, sometimes to get there. Crap and disappointment. Anger and frustration. But sometimes you need a bit of all that to finally push you to find the best answer you could possibly hope for. The best answer for you. Something will work, even when everything else doesn’t. Even when everyone else says no. You’ve just got to say yes yourself. It just takes one yes to get what you need. That’s it.

I’ve found a great answer for me. Maybe someday there will be an even better answer. But for now, this is my yes. This is my relief. This is what I’ve been waiting for this whole time, and I didn’t even know it. 

Who cares what I can’t do. I can do this. And it works for me. 

I’m back, baby. Zoom zoom...

Saturday, January 30, 2021

Help! I Need Somebody.

Uh, no I don’t. 

I am constantly being asked if I need help. Constantly. By my mother. Just her. Mostly around food prep and service. Not her saying, “let me know if you need help.” which I think I would take more kindly to. But, “Do you need help?” 

No. Maybe. I don’t know. But - I promise you - I’ll let you know. 

Dad asks me occasionally, but not nearly as much, and in much more tolerable ways. He asks or tells me specific things, like: “Do you want me to bring your tea in when it’s ready?” or “I will bring in your tea.” “Do you want me to carry that?”, or, “I cleared a path in the snow to your car and cleaned it off for you.” Or even, he might ask a more general question, like, “Can I help you with that?” but he’s asking about a specific task he sees me doing and possibly struggling with a bit. It’s not an all-encompassing, “Need any help?” called from somewhere else in the room by someone who doesn’t even see what I may or may not be doing. 

Most of the time - yeah, sure - some help would probably be nice. But I know what I can do on my own, and I ask for help with the things I need it for. And I usually ask Sweetie. Even if that means walking past my parents, into the other room, and interrupting her from whatever she’s doing. And 99% of the time, she is more than willing to help. She rarely, if ever, asks if I need the assistance. But when I ask her for it, she’s right there for me, no eye rolls, huffs, or whines about it. She might say (kinda usually does say), “Yes, in a minute.” But she finishes the thing she’s quickly doing and does as I’ve asked of her.  

And I think this is important. Super important. Sweetie has learned, by virtue of being my daughter, that some things are difficult for me. And so I need her to help me do them. Hubby obviously helps me out as well. A lot. But neither of them blindly ask me with every move I make if I need any help. Both he and Sweetie know I will ask them when I need them. They trust that I know myself and my boundaries well enough. I will ask. I do ask. Really, I will. 

Sweetie, though. Man. If Mom asks me if I need help, and it’s a situation where I actually do need help, I’ll usually say, “Sweetie will do it.” And Sweetie will be right there and, if Mom protests that, no, she can do it so that Sweetie doesn’t have to get up or stop whatever she’s doing, or whatever...Sweetie actually responds fiercely, “No! I’ll do it!” As if to say, “No. she asked me, she’s my mom. I will be the one to help her. Not you!” 

Or. Or! Mom will do her regularly scheduled ask of whether I need help or not (Seriously. It’s almost like a game at this point. I know she’s going to ask, and she knows I’m going to say no.) I’ll say no. But maybe now mom is actually near me and sees what I’m doing and probably feels that I really would be much better off if she just takes over. So she starts to do just that, or at least ask me again if I’m sure I don’t need help. It’s at this point that Sweetie will chime in with a stern, “She said no. She’s fine. Nana! She doesn’t need any help. Let her do it!” 

I know I should be mad at Sweetie for talking to her grandmother this way. I should tell Sweetie to watch her tone and just stay out of it. But usually? I’m actually kind of impressed with her for knowing me so well, trusting my abilities so well, trusting me so well, and having faith in me that I can do anything I set my mind to and, gosh darn it, wondering why in the world can’t others know the same about me?! 

I know. I know. My mom is my mom and she just doesn’t want me to do anything to exacerbate my pain. She knows I hurt. Probably knows I hurt much more than I let on. She wants to do whatever she can to ease any of this from my life. She’s a mom. She’s my mom. It’s what moms do. 

But, think of it from my point of view.

To me, I hardly ever move. I sit on the couch, get up to go to the bathroom throughout the day, then always right back to the couch. I feel bad about not moving much. I feel like my lack of movement is actually weakening my muscles and ultimately making me hurt more. It’s good for me to move as much as I can! So if lunch or dinner needs to be prepared, even though I’m in pain, I’ll go to the kitchen to make it happen. With Sweetie’s help most of the time, for dinners, anyway. Mind you, Hubby is the family chef. I’m never up and actually working on creating a meal. I’m putting existing food on plates to heat up - because Hubby is at work weekday nights and Sweetie and I need to eat. It’s never a huge chore to make food happen for us cuz it’s already ready already. But it’s enough of a thing to get me on my feet, working through the pain, and doing what I need to do to feed us. 

If I literally just sat on my butt all day, save for trips to the bathroom - which, honestly, that is pretty much my typical weekend anyway - with literally nothing else to do because everything is being done for me and/or brought to me - well, my muscles are just going to get weaker and weaker. My pain will get worse and worse. I will lose my abilities to do anything! And so, I need to continue to do what I can for myself. I need to push on. I need to, or I’ll literally lose all sense of myself. I’ll feel more helpless that I already do. I don’t need constant looking after, constant assistance. I am made to feel like I’m a fragile doll not able to take care of herself.  Let me be me, so I don’t feel like no one at all. 

Really. I do know my limits. I do. I do ask for help, from whomever is around at the time to do it. 

And, sure, the moving I do to complete a chore like dinner preparation is not the significant amount of moving that I need that would truly help me. Exercising would be much, much more helpful. And, with enough exercise, perhaps the other, more trivial moving around I do wouldn’t be nearly as painful. But, right now, I personally see any movement as good movement. I’m not an exerciser. I know I should be. But I’m not. I’ll work on changing this mindset. I know it would be beneficial. 

Anyway. That’s my rant of a post. Sorry. You probably won’t/don’t get what my big problem is, anyway. So what if I’m offered help a lot? That’s nice! People are looking out for me, not wanting me to do more than I should. Yeah. Okay. But it’s the blind asks, I think, that I’m truly upset by. You don’t even see what I’m doing, or you know that I just walked in the kitchen and haven’t had time to do anything yet, but you’re already asking if I need help. I don’t know! I just got here! I don’t know what I’m doing yet. I’ll let you know. I promise. 

And, at any rate, I’ve got my Sweetie to take care of me. My fierce defender. My confident girl who’s confident in me. 

I may not be able to do everything. I definitely know I shouldn’t even try to do everything. But with Sweetie’s help, together we can do anything.