By Diane Talbert, a U.S. Pain Foundation advocate
I’m a “baby boomer,” and I’ve experienced psoriatic arthritis for over 25 years. It’s hard to explain what it’s like to be tired all the time or feel pain 24 hours a day. The absurd part is that it doesn’t even bother me anymore. I just take my pain pills and go about my day. There are times I do face daily challenges and I know I’m not alone with this.
I remember the good old days when I could just jump out of bed, move furniture, around or even walk a mile. This is not the case anymore: just pushing a grocery cart is a chore. I have learned to educate myself about my disease. I know I need plenty of rest and a healthy lifestyle. I need to drink plenty of water and eat healthy.
Just walking up a flight of stairs can be draining. I decided years ago to find things to make my life easier. When I worked in an office, they always had someone come around to adjust our chairs and our computer monitors to make them more ergonomic. I always thought this was a waste of money until I started working from home–I soon realized that how I was sitting was putting more stress on my body and causing me pain. I was able to have someone from my company adjust my equipment and bring me a lumbar pillow, which has really helped my back.
Have you ever considered what else you could do to make your everyday life easier? Small things can make a big difference. My parents are 85 and they have always had a raised toilet seat–after getting myself one, I can tell you: it’s a secret game-changer. Also invest a jar opener and some type of long-handle reaching device. Both items have come in handy for me more times than I can remember.
Another thing that has made my life so much better is that I had a digital thermostat put in. My body temperature is up and down all day. This device allows me the freedom to adjust my room temperature when I’m stuck in bed all day. I need to conserve my energy on days like this and to me it’s worth it at the end of the day. There is nothing like a piece of mind to keep us going from day to day.
I don’t like admitting this, but I have had to call and have my groceries delivered and someone to clean my home. But I have also realized that there is no shame in asking for help.
Another big help is restaurant delivery services. If you have a pet, have a dog walking service on call for the days when you just can’t do it. Whatever your interests and passions, the rise of the gig economy means it’s easier than ever to find help. Your body will love you for it, and it will greatly benefit your mental health.
At the same time, I know a lot of us don’t have money lying around to make our lives more comfortable in this way, but try and treat yourself when and how you can. When you are in daily pain you need to make things easier for yourself, especially in your home. I work from home now because of my illness, so I need to make my space as comfortable as possible. As I’ve gotten to a certain age, I’ve learned just how important it is to not waste the energy I have.
Diane Talbert is a blogger, patient advocate and speaker for psoriasis and psoriatic arthritis. She has had severe psoriasis since the age of 5. The psoriasis covered over 70% of her body for the first 40 years of her life. She has had psoriatic arthritis for 25 years, but was only diagnosed 12 years ago. Diane presently blogs for Creaky Joints, The Mighty, Medium, Health Union and Patient Rising. She has been featured in Arthritis Today, Everyday Health, Arthritis Foundation, BlackDoctor.org, New York Times, and Health Central. She has spoken in front of the FDA about living with psoriasis and psoriatic arthritis, and was asked to be on a panel with several dermatologists as a patient advocate. She goes to Capitol Hill yearly to lobby and frequently speaks at town hall meetings. Diane ran a support group in the Maryland, D.C., and Virginia area for 10 years. She is also a volunteer for several organizations and vows to help find a cure for psoriasis and psoriatic arthritis. She loves being a wife, mother and grandmother. She has a great husband (Alvin), who is her number one supporter. She has two sons and four grandchildren. Her oldest grandchild, Nikyla, is attending college at Alcorn State University and wants to become a dermatologist.