A Stop on the Long Road

I finally found my stride. Everything is great (or as great as it could be). My body is holding up, my joints aren’t screaming, my energy is good, and I’m sleeping well.

Sounds like I finally, after almost 30 years, have gotten ahead of this whole Spondylitis thing.

Let’s bake a cake and celebrate!

The next morning...

“What is going on? Ouch!”

Axial spondyloarthritis is unpredictable and can strike at any time

An absolutely amazing stretch of good feelings can be ruined by a single flare of symptoms.

And, while I cannot tell you how to avoid these flares, I can share a few of the ways I don’t let these stops totally ruin my journey.

It’s not your fault

It’s the breakthrough moment in the film “Good Will Hunting” when the therapist played by the late, great Robin Williams tells the abused genius, Matt Damon, that the abuse he grew up with is not his fault.

Damon says “I know.”

But, Williams insists and says again “It’s not your fault.”

Once again Damon says “I know.”

And, this continues until, in a violent outburst, Damon finally lets go and truly understands he didn’t do anything to deserve his pain.

While our struggle with Spondylitis is a little different, we still hold on to the guilt that our pain is our fault.

“I shouldn’t have done that.” “I shouldn’t have eaten that.” “I should have said ‘no.’” We think we know the trigger that sets off our pain, and fully believe it is our fault. We feel guilty that we allowed a moment of weakness, to let us forget the limits set out by our condition, and we made it mad.

No, you didn’t. AxSpA and AS do not have a set of rules written in a holy book that dictate how you should proceed with it and what sacrifices you need to make to keep it happy.

It is going to do what it wants, no matter what we might have done

You needed to clean the house, walk the dog, go to work, and buy food. We have to do these things to survive in a happy home. If shortly after you do one of these activities, you experience a flare, it does not mean you shouldn’t have done it.

If I have learned anything from living with ankylosing spondylitis, it is that flares are unpredictable and are not connected to cause and effect. Your pain is not your fault. It was probably going to happen anyway. The human mind loves a puzzle and the cause of our symptoms needs to be solved. The fact that it happened after going grocery shopping, does not mean that is what caused it.

Maybe the Moon passed through Gemini causing a solar flare that changed the air pressure, and that is what made you hurt.

You did nothing to deserve this.

You can’t be blamed for living your life

Enjoy the ride

I know I just said you can’t blame yourself for your flares.

But, you probably already said “Yeah, but I know I’m not supposed to do xyz...”

It’s true, whether it is eating a chocolate cake when you know sugar is a trigger for you, or playing tag with your kids when you know your body isn’t built for running anymore, there are times you hurt, and you know why you hurt.

Once again, don’t blame yourself!

Did eating cake or playing tag make you happy?

If the answer is “yes” then forget about the rest.

Mental pain often goes hand in hand with physical pain. I’ve written plenty about how physical pain can affect mental pain. But, it also goes the other direction. Mental joy can affect physical joy. When you are brain happy, your body very well might feel that happiness as well.

Then if you hurt the next day (or even hour), cycle back to part one and remember, it is not your fault. You risked a little physical pain in order to boost your mental state.

When we live painful lives like we do, we need to be willing to take that risk, because the main idea is...

You’re only on this road once

This is the life you were given. Sure, it might seem a little unfair when you see people running ultra marathons and your genetics decided getting up from your chair would be a struggle. Believe me, I get it, I thought I was on that ultra marathon path, and finding out I was on a different path was upsetting.

But, I learned to accept it. I looked at the road I was on and I started looking for the interesting stops placed on my route. This does not mean I don’t still wish, from time to time, that I was on a different road and I find some of the pit stops aren’t all they were cracked up to be. But, I keep traveling.

YOLO!

I’m sure nobody chose the Spondylitis highway, but we are on a set track. So, travel safely, and enjoy the places you go, and the people you meet.

Especially the people you meet. We have the greatest community in the world full of lifetime friends who feel like family.

Flares are just a stop on the long road of life.