How Psoriatic Arthritis Changed What Busy Looked Like

The outside world often assumes that living with an autoimmune disease like psoriatic arthritis is a life of leisure. Some recognize that there are medical appointments to contend with, but there are some who also believe that we do nothing between those visits.

In my defense, I have a very busy and full life.

What a busy life looks like with PsA

Healthy friends and family will never understand what it is like to lose days and weeks of a month to illness. Those who work get the weekends off - I do not.

I work at keeping my body as happy as possible 24/7. But there is nothing fun about having my body scream out in pain. Another misconception is that flare days are fun days. Here are some explanations for what busy with psoriatic arthritis looks like.

It takes up so much time!

Managing a chronic illness takes up so much time. How is that time consumed, you may ask? Let's break it down.

• Days and nights are spent managing and tracking symptoms.
• Pain, while constant, does fluctuate and must be monitored. If not, it will spiral out of control.
• There are treatments to administer. Whether a monthly, weekly, or daily treatment, each takes time and focus from the day.
• Never-ending doctor appointments and tests.
• Energy levels change and must be monitored to avoid injury or physical burnout.
• Trying to find something to help me sleep when pain or insomnia keeps me awake.
• Fatigue is not the same as being tired and cannot be fixed with a nap. Instead, it forces my body to rest and robs me of the time I need to be busy doing what the rest of the world expects of me.
• Brain fog makes me work harder at remembering what I should be doing or how to do something even though I have done it a million times.

The impact on daily life

But it is more than dealing with psoriatic arthritis itself. It is also being busy doing the following...

• Figuring out how to modify the activities I love and sometimes having to realize that not everything can be modified.
• It’s psyching myself up to leave the house knowing that I will most likely return home in pain and be the recipient of rude stares and glares for using a mobility aid.
• Pain while away from home isn’t my only concern. I also have to consider the pain I will experience after I have returned.
• It is scheduling vacations or social visits with psoriatic arthritis. I try to tread carefully beforehand to prevent a flare on the day of. And then have to clear my schedule afterward to give my body time to recover.
• Psoriatic arthritis adds a layer of difficulty to family trips. I have to plan enough to entertain everyone else but not too much that I flare in bed for the remainder of the vacation.

Keeping my mind busy

I don't know how many times it has to be said. Psoriatic arthritis is so much more than joint pain. Managing the emotional toll of this condition also keeps my mind busy.

• I have to allow myself to feel anger over living with pain and limitations while not letting them define my life.
• Depression and anxiety are always lingering and must also be dealt with 24/7.
• Busy with PsA is finally accepting a new way of living and feeling proud for finding my new groove, only to be made to feel like a failure when the disease progresses.
• Reminding myself not to let the suggestions of friends and family, no matter how well-intentioned, cure my body take away from my progress.

What this means for me

Living with psoriatic arthritis and other debilitating chronic illnesses often feels selfish. But it is because I am busy dealing with all these PsA factors that I can give and spend time with others.

What are some other ways PsA keeps you busy?