A Day In The Life With Psoriatic Arthritis Doesn't Cover It!
Living with psoriatic arthritis for as long as I have, you might think I would be keen on the idea of writing a day in the life type of post. But I am not. In fact, I despise them.
Understanding that every day is different
Of course, I want to share what it feels like to live with psoriatic arthritis. The reason I despise them is that they do not really describe what life is like with a painful and debilitating chronic illness.
No two days are alike
Being diagnosed with psoriasis and psoriatic arthritis changed my life. Gone were the days of waking up and going about my day without thinking about or experiencing pain. Also gone was the ability to predict what my body could do on any given day.
Some days start out great with little to no pain. Others begin with panic and fear that I will not have the strength to make it from my bed to the toilet which is only five feet away.
There are productive days where I can write a blog post, create images, a marketing plan, and schedule for it in addition to making dinner and doing a little housework. Then there are days when my brain fog is so thick that replying to questions with one or two-word responses is the best I can do.
Each flare is different. With some I feel like my bones are crumbling, my blood has been replaced with ice, and my skin is on fire. Areas including but not limited to my hips, shoulders, spine, sacrum, neck, hands, knees, feet, fingers, and toes may experience pain in various degrees.
Sometimes it is a minor ache. Other times I feel like an area is being stabbed repeatedly with a jagged and rusty knife.
Some flares are only physical pain, while others include or exist only of brain fog. With a flare with only physical pain, I can usually do something if I use a mobility aid. But no matter how great my body feels, I am completely useless when experiencing a brain fog only flare.
My best/average/worst days of January are not the same as June’s. Like the weather, my flares and daily pain levels change with the seasons.
Colder weather affects my joints more while heat triggers nerve pain. Humidity at different temperatures also has a different effect on my joints and tendons.
If that was not enough change to deal with, how my body reacts to those same seasons often changes from year to year. Relationships, mental health, finances, and everything in between has the ability to make living with my illnesses easier or harder.
Giving a false image
Sharing just one day gives a false image of what it is like to live with psoriatic arthritis. If we share a good day, people who do not have PsA think that it is a walk in the park. When we share an average day, the terror of our worst days is overlooked.
Lastly, when we only share the horror of the worst days, we remove hope of good days for the newly diagnosed and friends and family doubt the validity of our illness when they see us on a good day.
How do you feel about a day in life posts? Do you feel they provide an accurate representation of what it is like to live with psoriatic arthritis?
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?