Redefining Rest With Psoriatic Arthritis
Psoriatic Arthritis, two words that for most of us have changed the way we live our daily lives. We have made adaptations and sacrifices by the dozen to be able to live a life that is more comfortable.
Our lives became quilts interwoven with pain, frustration, and complexity. There is nothing that is simple about any of this. Nothing at all, there are always add-ons and today’s is one of my most annoying.
The impact of pain and fatigue
Fatigue and pain are two things that come hand in hand when you have psoriatic arthritis. They are also ever-present in other autoimmune conditions. They make daily life near impossible for some and for others they are a mere hindrance.
There are lucky few who do not experience one or either of these symptoms. For those of us who do, we know that they can ruin a day in a few seconds. Leaving us bed-bound for days on end.
What does rest look like?
Logically, what do you do when you are tired? You rest. That is really the only solution to this problem. Let’s say though that you are really tired, you spend the day resting and laying down. You do all the things that your brain tells you will make you feel better, and you even manage an afternoon nap.
However, at the end of this rest day, you are in more pain than when you started. Every joint in your body aches, you feel totally exhausted and your fatigue has stepped it up a notch. It makes no logical sense, but here we are. These rest days have been known to throw me into a flare. How ridiculous is this?
Just last week, I had dared to have a movie day while staying in bed with my feet up. This left me with a sciatica flare, doubled over and doubling up my pain medications just to walk. This is what one does when you are so tired you cannot stay up and your body hurts. Well, not me anymore.
Creating a rest day routine
So I have had to redefine what a rest day is for me. More than anything I would just like to sleep it away or watch movies, read books, and nap. However, if I do this, I will not be able to walk that night.
My pain levels will be up and my mood will be down. What is the solution? I had to relook and reframe my rest days. They now have a manual and it is most effective.
- Get up early
- Make breakfast, start the house chores
- Open the house, just be still and awake for a while
- When you feel a new set of tired in the morning, crawl back onto bed with an alarm set for 2 hours
- Wake up, shower and dress
Allow yourself to have a slow day. Make a good meal, watch a movie, sitting up, and not laying down. Do small things around the house and just generally keep busy.
Find things that allow us to cope better
From there I make sure to stay busy at a slow pace. I make sure I do not have another nap, but rather an early bedtime. I am very lucky to have a little girl who mostly understands and is willing to adapt the activity to my capability on the day.
Battling these symptoms is so hard you guys, I know. We just got to find ways around the things that help us cope better.
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?