What is Involved When We Prepare to Go Out with Psoriatic Arthritis?

I think one of the most important lessons I’ve learned in recent years is that as much as we might sometimes want to, we can’t just stop living. Yes, everything we “used” to do has to be sorted out in order of importance and priority.

Life becomes defined by a different reality- one where fatigue, pain, and medications get to call all the shots. I’ve wrestled with this reality so very much over the years and as difficult as it might feel, we simply can’t just stop living.

We can learn to look at it a little differently. To continue living, we need to do things a little differently.

Plan, prepare and support for the next outing

So, to really illustrate my point, I’d like to take you behind the scenes with me at my latest attempt to not just breathe in and out but to actually enjoy my life, despite my PsA. And I’ll tell you this, with the right amount of planning, prep, and support from family and friends, it really is possible to capture these moments.

We don’t have to cast to the side all those fun things that we used to do that now just feel energy-draining and overwhelming.

Fearing the psoriatic arthritis flare

I recently had the opportunity to attend (with my darling hubby) a 20’s themed dinner dance. Now the pre-diagnosis me wouldn’t have given this dinner a second thought. I would have been all in, not only attending but planning and prepping it as well. But not anymore.

In fact, my first response was to totally second guess if I could even do it. Tickets weren’t cheap and I was so afraid of an ill-timed flare and worried about “wasting” the money and not even being able to even go. Not to mention managing the tonnage of oppressive guilt that would have come with that!

Working through the pain and fatigue of PsA

So how did I pull it off? Well, it was done with calculated and careful planning. No “last minute” throwing it together here. Nope, when you live with PsA, that just doesn’t work at all.

I don’t think people truly realize how many aspects of everyday life have to change because of PsA. There are things that most people don’t give a second thought to that we now have to figure out how to make them “work” around our pain and fatigue.

The gift of online shopping

It all started with figuring out what to wear. Having truly embraced a KonMari/Minimalist approach to life, I knew I didn’t have a 20’s glam dress leftover after all my purging. And as I don’t do things like this very often anymore, I figured I’d splurge a little on something new and glitzy to wear.

But the thought of going out, store to store, trying on dress after dress just seemed like the worst way to spend my limited energy.

So like any smart PsA patient, I went shopping from the comfort of my sofa and had several great options shipped right to my house where I could try them on, little by little, as I had the energy to do so. This is just one of the things that in the past, I wouldn’t have given a second thought to.

The effect on nails and joints from PsA

Next up, I had to consider my nails. Most people would suggest having a manicure and pedicure. And sure, once again pre-diagnosis me would have jumped at the suggestion. But not anymore, what used to be an amazing excuse to pamper myself now is just a distant, painful memory.

Getting a manicure is now insanely and sadly so very painful for me. My nails are a mess and my joints just can’t be handled in any sort of rough way. But at the same time, since my disease progression, my hands lack the dexterity needed to do anything resembling a decent job.

Sure, I could have just passed it off and decided to just let that particular aspect go. But my daughters would have none of it. Armed with some beautiful colors they got to work. And sure, it may not have looked like I’d just stepped out of the nail spa, my girls worked with so much care and love that it brought tears to my eyes.

Prioritize rest

Of course, I couldn’t plan anything. I told my family that chores just won’t be getting done and they were going to just have to live with that. So, I rested. I fed my body with healthy foods and plenty of water. I did gentle yoga to stave off any stress-induced flares and just generally pulled out all the stops.

Prep had to take place in stages; I couldn’t shower, shave, and fix my hair all in one go like I used to. Each part of the process had to take place separately. First, a bath to shave. Then a rest. Then a shower and a rest. Dry my hair and rest. Do my makeup and rest. Do my hair and rest.

And finally, get dressed. All of this, just to get out the door and start the evening.

What it really takes to prepare for outings

In many aspects, a simple story like this wouldn’t warrant a second thought. People may shrug their (I’m sure perfectly pain-free) shoulders and call it no big deal. But those of us with PsA, we know so much better. We know that there is so much that no one else would even have to consider that we have to give extensive thought and planning for.

This is why I thought it was so very important to share this “behind-the-scenes” look at what it takes for us to actually have a night out. So that people might actually “get it” and understand just a small glimpse into our life.