“Since my rheumatoid arthritis diagnosis, I have definitely discovered many paths to wellness, but something is still missing. My body still has lot of room to heal, but I need to keep searching for the path that is perfect for my individual body. The one thing I have accepted while chasing each of these different paths is that what I am looking for may not come easily or with a lot of guidance. There will be many dead ends. That is why it is so important to continue to be patient, open minded, and most of all continue to nourish myself both physically and mentally. With time, the path that is perfect for my body will be discovered. For now, I will continue to enjoy the calm that comes with the familiar. ”
The joy that comes from waking up each morning not only rested, but with a body that is a tad bit stronger than just the night before, is completely indescribable. (This is a nice counterbalance to another thought that I carried around for the past few years, which is that there is no way to even begin to describe what living with chronic pain actually feels like.) Throw in increased energy levels, healthy weight loss, and a peaceful minds and things get…well, even better!
Which doesn’t mean than I’ve reconnected with the life that I love so much as a result of this pain having gone away, but that I have been able to do so precisely *because* I continue to experience this pain each and every day. Just like the football team coming on to the field, every morning I have to intentionally punch through that barrier of pain and immobility that seems to always be setting in. (I also can’t help from thinking about dust: 1. even the smallest amounts are quite noticeable, and 2. the more it builds up the worse things usually get.) For me, this hasn’t been a journey of “finding out what works.” (It has, and it hasn’t.) It’s been a slightly similar but critically different pursuit that I’ve been able to identify during all the years that I’ve lived with RA: it’s about tapping into the continually shifting set of coping mechanisms that allow me to not only live with the pain, but to go out and lead the life I love.
It’s about what works for me right *now*.
Because what works for me tomorrow might be different than what works for me yesterday…and what works for me today is definitely very different than what worked for me last year.
(As some wise souls have already so concisely stated: the only thing that is constant is change.)
And as much as I’ve been sharing about how the things that I’ve started doing over the past few months have helped me tremendously, I’ve not talked as much about an even higher principle that has helped me even more. While pushing myself to do just a little more today than I did yesterday is important, and while the need to keep moving is absolutely critical, it’s even *more* important to not push my body too far, or to push my body too quickly. (Wouldn’t doing so be, by definition, the meaning of “harm?”)
It’s about listening to my body.
Just like I had to do this past week, when I injured some tendons in my left knee while stepping off a chair. Or when I reached a point Sunday evening when my back tightened up so much that I had to literally had to turn to stove burner off, step away from what I was in the middle of cooking, and go do some gentle stretches for half an hour. (I don’t even want to imagine what might have happened had I decided that I’d just finish what I was cooking, and *then* go exercise.)
A few months ago, I went through a phase that was absolutely frightening. I had entered into what seemed to be an absolute free fall, no doubt partially related to the extreme Prednisone withdrawal symptoms that I was experiencing at the time. There was much more at play, though–there was depression, there was my almost absolute immobility, there was my being away from home and, on many days, completely alone in a huge apartment in the hustle and bustle of Wall Street in lower Manhattan.
There was the fact that one afternoon, on those crowded sidewalks of New York City, and complete stranger came up to me and told me that I could do it, to not give up.
The thought of giving up never really entered my mind, though. (Although at one point I did admit to a close friend that I wasn’t exactly sure how I could keep pulling myself forward.) The friends who encircled me while I was away from my Home (with the capital “H”)–friends dating back to my high school and college times–were able to seen not only what I was going through personally, but there was also able to see the many challenges that seemed to appear with each new day.
The difficulty of not being able to digest food without considerable amounts of pain. The inability to focus in on text on the computer screen, words on the television screen, or signs in the subway station, even though I had just increased my eyeglass prescription a few weeks earlier. (The inability, for minutes on end, to even be able to see anything, as the inflammation reached the cornea of my eye.) The extreme sensitivity to smell that allowed me to identify what detergents had been used to clean the interiors of crowded elevators, SoHo restaurants, and three-level deep subway platforms. Losing the ability to control my body temps. Sudden skin rashes. Nasal allergies. Losing my sense of taste. And the list goes on, and on.
During this time, those around me often repeated the same statement: they were amazed with my ability to keep moving forward, and with my ability to stay so positive, despite all of the major challenges that I was facing. How was I able to stay so determined, many of them asked. How was I able to stomp on and over every obstacle that seemed to fall in my path?
My response was often one of that I didn’t have a choice. I had to do it; there was no other way. (Looking back I now realize that I absolutely had a choice. I could have gotten stuck, or more emotionally depressed. I could have focused on the negatives, instead of the positives. I had many options on how I handled the challenges in front of me, but I’m glad that the only ones that I was willing to take into consideration at that time were the ones that could–and eventually, would–lead me forward, to a better place.)
During my RA “career,” I have previously dealt with severe depression and suicidal thoughts. While I know that depression did play a part in what I recently encountered, I also know that what happened a few short months ago was so much more; it was something so frightening that even my prior brush with suicidal feelings, in the years following my diagnosis, pales in comparison.
You see, earlier this year I reached a point where my body started telling me that it was giving up.
I reached a point where even when I started listening to what my body was telling me, even when I started making as many changes as I could to help my body that was pleading for help, things just continued to worsen. The fear of what was happening to my body was quickly becoming just as paralyzing as my underlying disease. (This experience was, in fact, much more frightening than my previous bout with suicidal thoughts. Yes, at that time, my mind seemed to be giving up–no doubt a scary situation to find oneself in–but now it was my body that was giving up!)
And even though I could not yet see any improvement, I had to stay confident in the knowledge that I had tapped into a new awareness of what it meant to listen to my body.
I continue to listen to my body, as best I can, and you know what?
My body is no longer telling me that it wants to give up.
My body is thanking me. It’s also telling me that it wants to do more than it’s ever done before.
And this is why, at this moment, I am doing well. Not because the pain is gone, or because I am in remission, but because I have learned that my highest priority, from here on out, is to continue to listen to my body, as much as I possibly can.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Funny How It Hurts! A humorous guide to living with Rheumatoid Arthritis
by Donna Barton
Funny How It Hurts is a humorous collection of poems to create awareness for Rheumatoid Arthritis. With powerful and inspiring words, humor and whimsical drawings, this book resonates with anyone who deals with chronic pain. The author’s humorous renditions of day to day living with RA are an inspiration to all ages.
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