person's face with missing pieces shaped like puzzle pieces

Being Whole With Ankylosing Spondylitis

I have to admit that I rarely feel whole. I know my body is physically whole; in fact, I am in better health today than I was twenty years ago. In the past ten years, I lost 160 pounds, and I have more stamina and more good days than I have had since I was diagnosed with ankylosing spondylitis (AS) and rheumatoid arthritis (RA).

My joints are still swollen, and my hands still hurt. I sleep oddly if at all, and each day seems like a struggle. It is not that I cannot do those things. I can play with the grandchildren, I can pedal my bicycle, I can walk on the treadmill, but all the time I am doing it I know, I will pay tomorrow. I will be sore and stiff, and I drag like a man who has not slept for a year. It is that second day that causes the issue.

How would it feel to not worry?

Now do not think I am feeling sorry for myself. I like my life. It is arranged comfortably; I live in a safe house; we manage our bills well. I love my wife, sons, their partners, and grandchildren. But I wonder, how would it feel not to worry about tomorrow? There was a time I did not worry about how I would feel tomorrow. A time I would hike 12 miles in the thin mountain air, sleep on the ground, rise early and do it once again the next day, and the next and the next. I once hiked like that for 25 days. I was 17, healthy, and feeling fantastic. Heck, I was even newly diagnosed with diabetes that summer, and all that hiking while using insulin. I felt whole, accomplished even.

Measuring myself

I do not feel that way anymore. Maybe that is okay. Perhaps at 63, it is okay that I can no longer do that. But I still miss it, and I still measure myself against that 17-year-old. I think most men my age measure themselves against their younger self.

What I cannot get my head around is how AS and RA impact that measurement. I know I have to account for it. I have to say yes, this was my younger self but without AS and RA. But how can I say that what I do today is what I should be able to do? I cannot even decide if I should account for it. Maybe I should say forget it, arthritis is a thing, to overcome, fight against, something to say I will not ever account for.

Stumbling blocks

But when I muster all that bravado, I seem to get those little stumbling blocks in my path.  I take methotrexate, and I miss a day. I have a slight flare, and I miss a week. I lay still to sleep through the night, and I miss the morning. In those times, I say, I am not whole. I can never be that 17 year old ever again. Heck, I cannot even approximate what that was.

Seeking new benchmarks

So I need a new benchmark. I need to find a new way of approximating my success. Success with three chronic diseases. Success based on what I can do, not on what I used to do. I suppose I will look for that for the rest of my life—a new benchmark to measure against. I think my therapist would say I need to stop looking for benchmarks. Instead, live for the possibilities of today. Not the could have, should have, might have of yesterday. I think, however, that measurement is part of me. It is as ingrained as my DNA. It is who I am, and for better or worse, that has worked well for me over the years. Even if today, it is no longer especially useful.

Letting go? - Ah, no

So can I let it go? Can I call myself whole today? Well maybe. My wife, Sheryl, advises me often that I must do that. She said the other day; you have accomplished a lot in your life and career. You can stop measuring yourself. Just live. Well, I have to say on my 63rd birthday I am not there yet, and since I am not, I do not yet feel whole. But I am trying.  I may not be whole today, but I am ready to keep trying.

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

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

Join the conversation

or create an account to comment.