chronic illness · chronic pain · writings

the good day

So I haven’t really told many people about this but things have been really tough lately with my pain and I think I need this reminder.

Maybe you do too.

A few months ago (June 22 to be exact) I woke up and my body felt “different”. I don’t know how to explain it but my usual morning awful pain wasn’t quite SO terrible. My best friend had spent the weekend with me at my mom’s and while she got up to go to the bathroom, I said to myself “Try to walk. See if you can.” To my utmost surprise that when I placed both feet FLAT on the floor (something I cannot do because of how terribly painful it is) I could actually tolerate the weight of my body. I took a step. And I took another step.

I walked. I f****ing walked.

I screamed for my mom to come up stairs and showed her my walking skills and I thought she was about to start sobbing. I would’ve cried too had I not been utterly in shock.

I kept waiting for it stop. My brain couldn’t comprehend how this could be happening especially when I hadn’t done anything dramatically different treatment-wise. My foot and leg by no means felt “normal” so I still had to take my usual meds but I walked all over the house. I walked to get a cup of coffee, I walked to go to the bathroom, I walked out to the porch to drink our coffee and talk.

Anywhere I wanted to go, I did.

I cannot tell you what it was like to have this body, this body I remembered having but haven’t had in awhile. It was so weird and exciting and strange. What in the world had made my nervous system to ease up enough  to allow me to walk?! Every hour that passed I kept waiting and waiting for things to change. I was too wary to think this was how things would be because I have had my heart broken too many times when it comes to my health. I have been sick a long time and I did not want to be completely devastated if this bizarre change of events changed.

My mom kept telling me to slow down but I didn’t want to ask anyone for ANYTHING. If I needed water, I wanted to get it. If I needed something upstairs I wanted to climb every step and then go back down without having to slide down on my bum. I even was able to go in my mom’s pool and lay on a float. Me!!!!

I wanted to shout it to the heavens and post on Facebook and instagram but I held myself back. I have found that when people haven’t experienced lengthy illnesses when something goes “right”, people can assume that you are “cured” or will continue to stay better. Sometimes that happens but a lot of times it may not continue. As I have mentioned before, chronic illness isn’t linear and people can take a step or two forward and then swift fall back 7 steps. I worried if this “good day” didn’t continue after I told everyone, that I would feel sheepish and embarrassed when things went back to my usual not so fun normal.

It was however so exciting and special that my mom, my dad, and my best friend got to see me be “me” again. The bittersweet part was that Sean wasn’t there. I wanted him to see me walking more than anyone.

I walked my ass all over the place from 8 am until  I went upstairs to take a shower without my shower chair. I wanted no reminder of the life I have been leading.  Standing there under the water my pain began to creep WAY up and by the time I was out I was miserable and needing my wheelchair. I could tell my parents were both upset but I assured them how great it was and that maybe it would happen again.

It hasn’t.

Some days I think about that day. What was the equation that made that happen? How can I make it happen again?

I don’t know why my body did that or how to get it back.

I wish I did.

That day however was an amazing day for so many reasons and the most important reason is that it showed me it was possible. It IS possible for me to walk again. It IS possible for me to not have my pain make me feel like I wish I was dead on a daily basis. It IS possible for my body to act “right”.

Days like today its hard to imagine. Im in a lot of pain, sweating profusely, and dreading trying to leave my bed to go to the bathroom. Its hard to comprehend that THIS body could be THAT body.

That good day showed me otherwise.

I hold on to the hope that another one will come my way. If you are reading this and you are ill, please hold on to that belief too.



4 thoughts on “the good day

  1. What a surprising gift you got that day. I know all about the non-linearity of chronic pain. Some days, I can walk fairly well without a cane. Some days, I have to crawl to get to the bathroom. (We all know the frustration of having to go to the bathroom when you can’t even move without agony.) Some days, I use my mobility scooter for everything out of the house. Other days I can walk a few blocks without a huge pain spike. But, alas, I never have miracle days like the one you had. I used to hold out hope but I found that kind of hope made me feel like my life was on hold, as I waited to “get better.” Now I just try to live the best life I can as I am now.

    1. I think its a delicate balance of accepting your life as it is right now while not completely giving up on yourself. Of course there are people with certain illnesses that just will never be “their old self” and thats hard but I think you have to come to a place of acceptance with that. I find myself doing my best to accept my life in the wheelchair and in the enormous amount of pain I am in on a daily basis but I also push to not completely give up on getting any better. The miracle day was nice to have. I haven’t had one since then but it was SO nice to walk again. Im sorry you are suffering too. You have a fantastic attitude.

      1. There’s really no chance of my getting better in the sense of being “normal” again, so hanging on to that hope is just… not being honest with myself. I can improve some, though. After the wedding, for instance, I’m going to get a treadmill, and practice my walking in the safety of my home to see if I can learn to walk better. Many years ago, when I was more fresh to chronic pain disability, I heard a radio interview with former Olympian who had lost a limb and she said something that I still carry with me. She said that when she became disabled, she had to give up her old dreams, but that she had to replace them with new ones. Giving up on ever being who I once was is not the same thing as giving up altogether. It’s just healthy realism. I have new dreams now, new ways to look forward to my future with excitement, even in all this pain.

  2. That’s wonderfully amazing! Take it as a sign that you are doing all the right things and taking the best care of yourself. It’s hard not to want to do everything and anything when a good day comes, especially when they’re so rare. But keep it slow, build it up and see where it takes you 🙂 it’ll happen again. Have faith in that and keep up your self-care. You are amazing!

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