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My Favorite Memories

“My favorite childhood memory is my back not hurting.” –Amber Myers (@spondymom)

I recently came across this quote from an ankylosing spondylitis (AS) patient, Amber Myers, who posted on Instagram about her favorite memory as a child before she had arthritis and chronic pain.

My favorite memories before RA and chronic pain

I can’t remember if this “favorite childhood memory” theme was a ‘thing’ that was going on when it was posted and if other people were also posting their favorite pre-pain/illness memories. When I happened to see the post, via the #chroniclife hashtag, I just grabbed a quick screenshot of it on my phone because I knew it was something that I wanted to think about more. What are some of my favorite pre-RA memories? Do I have any?

In no particular order, here are a few of my favorite memories of life before RA and chronic pain:

Not taking pills every day. And of course not getting I.V. infusions and injections of RA medications. If I stop and think really hard about it, I can still remember what it was like to not have to take pills every day. Nothing. No meds. There was nothing that I needed to take! I could wake up, pain-free, and be able to eat breakfast and start my day without having to gulp down a handful of drugs. This amazes me when I think about all of the numerous and different pills I’ve had to choke down every day for the last 22 years. It would be such a relief to be pill and drug-free again.

Energy! Did I used to have energy? Do I remember it? Yes, I did have energy before I got RA, and a lot of it. It’s difficult to remember and conjure up now, however, because of how little of it I currently have. I’ve struggled for many years against fatigue, exhaustion, lethargy, and apathy as a result of having RA. During those pre-RA years, I was a healthy and active kid who possessed endless amounts of energy. But once I got RA, at the tender age of 18, that energy quickly vanished and intractable pain and disability took over my life.

A healthy weight and body. Before I got RA, I was never overweight and never struggled with my weight. I wasn’t rail-thin or skinny, but my weight was in a healthy and normal range. Of course there were things I didn’t like about my body back then, like any typical teenage girl, but in general I didn’t really struggle with weight or my body image. As a kid, I was also quite physically active: playing several different sports and enjoying doing things outdoors.

Fast forward to living with RA for some years and significant weight gain due to medications (prednisone), physical inactivity, and illness. Suddenly, while I was still very young, my weight started to become a problem, increasing at an alarming rate as the years passed. And, frustratingly, there wasn’t much I could do about it.

Today, I am still overweight, despite trying very hard to lose the pounds needed to get back to my old, pre-RA self. Or closer to it, anyway. I would love so much to get back to feeling good in my body and in my clothes and better about myself overall. I can still remember how this feels, even if it seems like it’s unfairly and impossibly out of reach.

Freedom. “Freedom” isn’t one specific childhood memory, of course. But it encompasses the feeling of being free from all of the constraints, limitations, obstacles, and burdens RA and chronic pain can put upon a person. Before I got RA, I was “free” from all of the tedious and exhausting healthcare responsibilities that came with getting the disease: doctor visits, medical appointments, tests, procedures, surgeries, communication with nurses, phone calls, phone tag, pharmacy visits, MyChart messages, medical questions, and the list goes on. So much of my time is taken up by these things. It’s daunting and overwhelming. And I miss having the freedom to not have to worry about any of it.

There’s also the pre-RA freedom of being able to do so much more in life. Before RA, I could play softball and basketball and go on long bike rides. I could take a walk around the neighborhood or the mall without my feet and ankles being in excruciating pain. I could draw or paint for hours, my fingers remaining normal and not painfully swollen up like sausages.

Getting “lost” playing the piano for long stretches of time was something else I loved to do. I could also go to festivals and fairs and concerts and take trips where I had to stand or walk a lot and there was no problem with this. There was no pain! The freedom and carefreeness I had in my life before RA is now incredible to think about. Of course, I took it all for granted, and who wouldn’t? Who would think that they’d get struck with a painful chronic illness at age 18? Not me.

But yes, freedom. I miss it so much and in so many ways. Every single day. I don’t think I’ll ever forget how wonderful that freedom was.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • btcavanaugh1720
    2 months ago

    Thank you for this reminder. I miss not having fatigue. It colors every part of life.

  • Cynthia Ventura moderator
    2 months ago

    Like you Angela, my list would be extensive and mirror yours in many ways. I too miss a body with few limitations, no chronic pain and endless energy.

    What I think I miss the most though is how social I once was. How many friends and colleagues I once had. I loved having cookouts and holiday parties or parties for no reason, just to get together with friends and have a good time. Cooking and baking has always been a big part of my ancestry and identity. I tried to continue my active social life after diagnosis but little by little I realized it wasn’t possible. I no longer had the energy, my feet and hands ached all the time, my knees gave out, my laughter was hollow, my happy face was no longer as happy. I couldn’t fake it. My joie de verve had dug itself a hole, slithered in and buried itself under a ton of rocks.

    Though I’ve regained my smile and my laughter is even more heartfelt than before I miss that other Cynthia. That happy, carefree thrower of parties and bbqs. Baker of custom made and decorated birthday cakes. She hadn’t a real care in the world. She just enjoyed her life, her friendships and bringing a little bit of joy into other people’s lives. That’s what I miss most.

  • Lawrence 'rick' Phillips moderator
    2 months ago

    My favorite memory was backpacking in the west. Wow, what great fun. It was hot, dry, dusty, the pack was heavy and it was fantastic for a 16 and 17 year young man. I never worked so hard, had so much fun and felt so alive.

    Oh and it did not involve shots when I was 16 and it did not matter much when I was 17.

    Oh and just as good, 3 day train trips across the country by myself. Yeah now we are talking fun.

  • Daniel Malito moderator
    2 months ago

    @angela People ask me if I’d go back and not have RA, and I often say I have no idea, I don’t remember what it was like to not have it, we’ve been roommates for so long. Plus I was so young, who knows what it was really like? It’s difficult when it was always there, but it also has it’s upside. I don’t think of it as not freedom, though, because I get to do so many other things I never could if I didn’t have RA. It’s a trade off, I feel, like every other single thing about RA. I do miss some of things I could do without pain, though, that’s a universal thing with long-term RA patients I think. I feel you. Great post, Ang, keep on keepin’ on, DPM

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