A Week in the Life of a Flaring Psoriatic Arthritis Sufferer
Living with psoriatic arthritis can feel at times like a game of craps.
What does daily life look like when living with psoriatic arthritis?
Each day brings a new challenge or change of circumstance seemingly based on the throw of a metaphorical dice. This is my typical experience of living with psoriatic arthritis over a week.
*Alarm chimes* Monday - let’s see what you've got. I lost a couple of hours of sleep last night to that knee that wouldn’t stop throbbing. You’d think it wouldn’t hurt with no weight on it. How heavy are these bed sheets!?
At least I took it easy over the weekend. Monday also comes with a feeling of regret. I sacrificed my free time to be fit enough for work. *sigh*. As with every morning, quick self-health check. What hurts? What doesn’t but did yesterday? Have I lost any movement?
Apart from the knee, everything seems ok. Then I step out of bed and as per every morning, momentarily I completely forget about the heel pain. Most psoriatic arthritis sufferers will be familiar with plantar fasciitis at some point in their lives. My current flare of this has lasted almost 18 months and every day I step out of bed to the sensation of walking on broken glass. It eases as I use the tendons throughout the day but it bites me every single morning.
Fast forward to Monday evening and I’m exhausted. I have a desk job by design and every Monday I still feel like a teenager that’s just completed their first day of work experience. I’m beaten. By 8PM I’m struggling to stay awake on the sofa, by 1AM I’m finally asleep in bed thanks to disruption from the pain.
Mid-week breaking point
By Wednesday evening, I’m ready to cry. On the plus side, I know what I am working with at this stage of the week. A very painful right knee, sore neck, stiffness in my right hand and of course, those heels. However, by now, the dreaded fatigue has set in.
I have had numerous forms of arthritis since I was a child but it was only with psoriatic arthritis that I experienced chronic fatigue. It’s indescribable to somebody that’s not lived with it.
The way your body feels ten times heavier, the struggle to keep your eyes open or how the simplest task of changing the baby can feel like you are trying to accomplish it with a small car on your back. It’s exhausting.
At this point in the week, I am irritable, my patience is limited and my mood is flat. I’ve stopped doing the things I enjoy in the evenings and I am not getting to sleep until the small hours. I am a robot who’s only mission is to get through the work-week to pay the bills.
Friday. Goodness knows how I did that!?
Forty hours work and 65 tablets later, I’ve made it to Friday. I was supposed to go to the pub with friends tonight but I’ve picked up another chest infection from the biologics. I’ll have to cancel. I always have to cancel.
Anyway, no need to be disheartened, it’s Friday. A takeaway and a movie with the wife and no need to worry about how long the pain takes to control or when I get to sleep, its Saturday tomorrow.
It’s normally at this point my wife reminds me we have a one-year-old. I can’t even remember what a weekend lie-in feels like!
I love Saturday’s with my family. Becoming a parent was the best painkiller I ever discovered. It gives me focus and my fight to carry on. Becoming a parent with arthritis was what encouraged me to start writing.
Relax, it's the weekend
The possibilities - day trips, dinner with friends, catch a show? But wait, I should probably rest to ensure I get to do this all over again on Monday. *Screams*
What does ‘a week in the life of’ look like for you during a flare? What is your motivation and how do you manage?
Can you exercise with your PsA symptoms?