After receiving a diagnosis of axial and peripheral spondyloarthropathy (AxSpA and pSpA) 5 years ago, I made a vow to remain active as best I can. I have good and bad days with regard to my enthesitis and spine pain. Although it has taken a long time to admit and accept I have moderate restrictions in my ability to function physically, I have discovered some very useful items and services that greatly support me while dealing with my disabilities living life on life’s terms.
Disability plates and grocery shopping
Slowly, I am learning to ask for what I need. It gets a little easier as time passes on. In the past year and a half, I fought with the idea of asking my rheumatologist for a disabled placard and license plate. It would have made many things much easier on me having this sooner. At a recent appointment, I decided to finally ask. With no thought at all, he whipped out the form and signed it. He saw I was struggling, for one a hip that needed to be replaced, and agreed I was having issues with my mobility. Access to closer parking has helped immensely with my SpA battle and flares in the long run.
Since the pandemic began, I have given in to online grocery ordering and home delivery, taking the burden off loved ones. For a fee, a shopper will pick up groceries and personal items and have them delivered to my home on a pre-scheduled date and time. Current social distancing guidelines, my immunodeficient health status, and the inability to walk more than 15 minutes in a grocery store have convinced me to get help. I know walking is the best low-impact activity I can do to keep mobile, so this personal decision is temporary, but a marvelous novelty.
Medications and pain management
When it comes to managing my medications for SpA, I bought a pill organizer. It has 7 daily removable pill containers with 4 compartments in each - morning, noon, evening, and bedtime. The plethora of supplements and prescription drugs I currently take, I was having a hard time remembering which pill to take when. It’s essential when my brain fog kicks in, which has been pretty active lately. The removable daily pill boxes make it easy, too, to pull and place next to my bed at night so I don’t have to get up, possibly tripping over my 2 fur babies in the dark.
I find I have a good amount of nights I cannot sleep due to discomfort from inflammation. Combating miscellaneous aches and pains keeping me awake, I assembled a bin under my bed with a heating pad, massager, and TENS unit (with sticky pads and back up 9-volt batteries). Included are pain relievers, creams, and rubs. Instead of getting up and stumbling through the kitchen or bathroom at 2 a.m. looking for pills and an ice pack (I have about 5 in the freezer currently), I can lean over, grab the pain killers or therapy device, and lay my head back down. This makes sleep easier and quicker to attain. Admittedly, I do still have to traipse through the kitchen for an icepack when the aching gets bad enough, but putting a small freezer on the side of my bed is still on the table – ha!
Work and sleep comfort
I really do enjoy working, but since 2018, I haven’t been able to keep up the pace in that rat race. Fatigue hit hard and I took time off. Still not back in an office, I chose to be more creative and work from home. When in a flare, and my back and pelvis ache in my desk chair or at the counter, I transfer my work area to a more comfortable spot. I placed a portable desk with an extra power cord for my laptop next to my bedside table. Sometimes, I am just more comfortable in a different position, especially since we purchased a zero-gravity adjustable frame and mattress. It takes pressure off my lumbar spine and neck and distributes weight throughout my body. And, there are so many more advantages to zero gravity, not only pain relief – Greatest purchase ever!
Knowing how to help myself is a beneficial step toward remaining mobile and independent while managing my disabilities. I want to be able to continue to do things for myself in the future. Although spondyloarthritis has changed my life drastically, I continue to discover boundless ways to carry on, and mobility aids and devices afford me this comfort.
Resoures and products I love
- Handicap license plate
- Instacart Grocery Delivery
- Ezy Dose 7-day Pillbox
- PureRelief Deluxe Gray Heating Pad
- Shiatsu Back Shoulder and Neck Massager with Heat - Deep Tissue Kneading Back Massager for Neck, Shoulders, Foot, Legs - Electric Full Body Pillow Massage
- TENS 3000 3 Mode Analog TENS Unit with Timer
- FlexiKold Gel Neck Ice Pack w/Straps (23" X 8" X 5") - Reusable Cold Pack Compress (Therapy for Pain, Injuries of Neck, Lower Back, Shoulder, Wrap Around Knee, Shin, Foot, Calf) - 6301 Cold-Strap
- Laptop and Tablet Tray with Built-In Charger
- Member's Mark Twin XL Adjustable Base
- Tuft & Needle Mint Mattress XL
- Zero Gravity Advantages
Does reading AxSpA patient stories help you in your journey?