Good morning, fellow #spoonies and psoriatic brothers and psisters! I realize it has been quite some time since I last wrote for you and boy, do I have a lot to share! This week, I thought I’d share about my self-care game. I recently traveled from Dallas to Pittsburgh for the wedding of a very dear psister. The topic of this post jumped out at me while I was in my hotel room on the trip and then, again, at home, when I was in bed for two whole days trying to calm the inflammation in my body.
What does a pain and inflammation after a trip have to do with self-care? I quickly realized EVERYTHING. I have written posts in the past about how to make travel easier with a chronic illness here and here but this trip was different. You see, since moving to Dallas I have been on medical leave, so self-care is my full-time job. It was super evident to me on this trip when I realized all the facets of self-care I enjoy at home that I could not utilize on my trip. Hence, here is how I know my self-care game is on point. (Note: I realize not every patient can take advantage of my methods, so this is in no way a To Do List for anyone else.
1. Adjustable Bed: Last year we upgraded to an adjustable bed with pressure control. This has been incredibly helpful with my Psoriatic Arthritis (PsA), Ehlers-Danlos Hypermobility Syndrome (h-EDS) and my Postural Orthostatic Tachychardia Syndrome (POTS). No hotel provides these. Although the hotel bed was nice and firm and I brought my hard pillow from home, I found comfortable sleeping a challenge, as I could not get adequate relief for my neck or legs. I awoke unrested and still sore;
2. Seated Shower: I request a handicapped room with a seated shower in my hotel. This hotel did not have a built in shower bench, but a portable shower stool. This was helpful, but the bench was much lower than I am used to and required use of the handrails to sit and stand. Also, it was quite narrow, as it was in a tub, not an open shower stall, and shifting about on it to get everything washed was a bit of a safety risk. Also, there was only a standard wall-mounted shower head, making rinsing off a challenge. My husband and I gutted the master bathroom in our new home to make it more accessible for me, including a custom shower seat that is both tall and broad, with handheld shower head;
3. Bathroom Seating: I am used to having to bring the desk chair in hotel rooms to the bathroom mirror for tooth and face care, but this hotel had gorgeous antiques. A rolling desk chair is ideal, but the beautiful upholstered chair at my desk was heavy. It was taxing to my wrists and arm joints moving it several times per day;
4. Smart Home Devices: At home, I am good at setting timers for rest, naps and when it is time to leave, but we have smart devices to help me. Nearly every time I enter a hotel room, I catch myself saying “Alexa, turn on the living room” or “Alexa, set a timer for 20 minutes”. Taking the extra steps to set these on my phone nearly had me forgetting to set any alarms;
5. Personal Size Electric Fan: Because of my POTS, I frequently sweat after a shower, like, lots and lots. I keep a small fan in my bathroom to keep me dry as I apply my lotions, potions and apply makeup; and
6. Flexible Schedule: I have the luxury of an open schedule so that, should a nap be necessary, I can take one when I need to. This is not always possible when attending conferences, meetings, social events or even just visiting friends and family.
Arriving home to all my chronic illness creature comforts, it became obvious to me just how on point my self-care game is. I would love to hear about yours and welcome any suggestions you have to help me on my next adventure.
Bonus points if you can identify the bride from my trip!