Ask The Advocate: How PsA Impacts Daily Life
Psoriatic arthritis can change how you live your life every single day. This condition is the center of the wheel that outreaches to all different aspects of life: physical and mental health, family, friends, and career.
Psoriatic arthritis and daily life
If you're looking for a community that understands, then look no further. Our amazing group of advocates answered a few questions to share their experiences and tips with the community. In this “Ask the Advocate” article, we asked them to share one real story where psoriatic arthritis interrupted and affected their daily lives.
Pain in my hands makes it harder to do daily tasks
Response from Jim Snedden
I was about to make spaghetti sauce. I grabbed the can opener to open the can of tomatoes. I couldn't turn it, as it hurt so bad. I kept at it. I cried it hurt so bad. Must have taken 20 minutes but felt like forever.
Feeling scared and in denial
Response from Alisha B
I remember being at the airport and experiencing pain in my knee but due to my age I was too scared to ask for assistance or a wheelchair. Luckily my PsA is not typically severe, but in moments when it has been I trick my mind into thinking maybe I did too much during exercise or that I need to slow down.
Sometimes I am in denial about what is really going on with my body. Last year I was experiencing really bad back pain in my lower back, which was preventing me from exercising and engaging in sports. I had to let my body rest until the inflammation went away. It took about 2 weeks for my body to calm down.
TMJ is painful and distracting
Response from Elizabeth Medeiros
There have been so many times psoriatic arthritis has interrupted things, but a flare in my TMJ totally flipped my daily life upside down. Arthritis in my jaw is usually active, but in my junior year of college, it flared for two and a half months. I woke up every morning at 2 A.M., feeling like my teeth were about to pop out of my head.
It wasn't just a struggle to talk and eat: the inflammation in my jaw irritated my neck, shoulders, and even facial muscles, so I was always so sore and stiff. It was an exhausting, draining time: I truly felt like I was dragging, and I was always in a fog.
Brain fog makes it hard to focus
All my classes assigned a lot of work that had to be done on the computer. Sitting in the computer lab for hours aggravated my condition a lot, and I struggled to concentrate because of the pain and brain fog. That semester, I learned an important lesson on putting away my Type A personality and perfectionism for the sake of my health. Most nights, homework got put away by 6 pm so I could rest. Accepting a few B's was less painful than forcing myself to sit at the computer long enough to get an A.
It also affected all my meals. Can you imagine a college student having to skip out on pizza? I often had to plan my day around what I was going to eat, and sometimes I couldn't even handle opening up my mouth enough to eat enough to feel satisfied. There were times I was very sluggish because the foods I was able to eat weren't very nutritious.
The only positive side was I discovered a love for Chinese hot pot. My boyfriend and I went at least once a week, and I enjoyed plenty of spicy broth, rice noodles, and flavorful yet mushy veggies. It inspired me to learn how to make my own hearty soups!
My social life hurts, which affects my mental health
Response from Joel Nelson
I guess I would say my current flare, that I have written heavily about. I was a rugby-playing cyclist and runner who was showing what could be achieved with arthritis when managed carefully. Then the treatment stopped working.
I am currently pretty much housebound, in and out of my day job subject to flares, in pain all day and night and unable to do the things I love. I have lost touch with friends through my inability to partake in hobbies and inevitably, depression follows.
The rollercoaster nature of arthritis, the unexpected flares and surprise remissions, make it a heart-breaking and disruptive disease to live with. You can’t plan for tomorrow and feel like you are always letting people down.
Find more about the impact of psoriatic arthritis on daily life
Learning more is as easy as signing up for our email list. Our collective voices have a huge impact, and we hope you will add your unique voice. The best part? Your journey living with psoriatic disease is all you need to get started!
This article was originally published on our sister rheumatic community, Psoriatic-Arthritis.com.
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