We just celebrated Thanksgiving which means now we’re on a runaway train to Christmas and New Year’s, and thus the holidays are upon us. The holidays are a nice time to spend some quality time with family, eat lots of great food, exchange gifts, revel in the holly jolly spirit, etc. But one of the behind the scenes lifestyle challenges that always crops up this time of year for me is fitting my morning personal care schedule around holiday events.
As I’ve mentioned here and there in the past, I need assistance with a number of my personal cares every morning to get me fully ready for the day. Every other day my morning routine can take up to (or over) three hours; I call them my “long days.” Those long days are the ones that can be tricky to work around during the holidays. As much as possible I try to avoid having my long days on any major holiday so it doesn’t interfere with things. As many of my fellow quad peeps know, some of the “setbacks” that can occur from parts of our more invasive personal cares can be messy, embarrassing, and can require a decent amount of help getting squared away again. So that is why I am decidedly evasive about doing certain things on the major holidays.
Thanksgiving is relatively easy to work around. I sandwich my “long” days around it on Wednesday and Friday. The only hitch there is that my mom (who acts as my PCA when I’m home) is a part-time manager at Macy’s and sometimes works a Black Friday shift. So if her work shift is too early in the day then we either need to start earlier than usual or push things back until later in the day, the latter of which can get me off schedule a bit.
Working my long day personal care routine around Christmas is a little trickier because of Christmas and Christmas Eve being on back to back days. Therefore, with me having an every other day long day routine there is no choice but for one of those days to get hit. Stretching them out to every third day can be bad for my body. Typically, I choose to free up my Christmas morning so we always do my long day on Christmas Eve morning. Last year my mom couldn’t help me Christmas Eve so I had to have my regular Minneapolis PCA come in and then I drove home to Eau Claire after that. It was the first time in my life that I didn’t wake up at home on Christmas Eve.
The same goes for New Year’s Eve and New Year’s Day. I would much rather have fun New Year’s Eve and wake up more leisurely New Year’s Day morning. Not wanting to miss college football bowl games on account of regimented toilet time is a big motivator as well. Therefore, I almost always do my long days in the morning on New Year’s Eve.
I never do my long days on Easter morning either, since it will interfere with our Easter church service and noon family dinner. For the Fourth of July I almost always do the long morning routine on the morning of the 4th so I can stay up late and sleep in the next day and not worry about it. As for a few non-holidays, but nonetheless important dates in my life, I never do my long day routine on my birthday or the anniversary of my diving accident (July 12) because any potential setbacks on those days always feel extra frustrating.
A related issue to everything laid out above is the somewhat frequent lack of privacy that I experience doing my personal cares at home during the holidays. In general, my bedroom at home is private. It was designed to be a pseudo-apartment from the start, where I lived during my last year of high school and all through college. I have my own bathroom in there and a private ramped hallway that goes from my room to the garage (the only accessible entrance to my parent’s house). But it can also be a high traffic zone at times. There is a door that goes from my room to the back deck and my parents often use that to go into the backyard while I am sitting in the bathroom on the toilet with my boxers around my ankles. A lot of times my bedroom door gets left open, which increases my stress level a bit in case someone unexpectedly walks in and sees me in a very private, vulnerable, and embarrassing state.
The new lack of privacy wrinkle that has been interjected over the last few years comes a la my three year old niece and four year old nephew. Whenever they’re home they tear through the house with their play zone stretching from the basement, to the living room, to the kitchen, to my bedroom, to my ramp, which they love playing on. But my room often becomes the primary play zone because my childhood toy box is in there, which is a treasure trove of toys that ranges from G.I. Joe to toy guns to balls to toy cars and trucks. In fact, it’s gotten to the point where it’s very rare for me to have a toilet/shower routine that doesn’t involve them playing in my room right in front of the bathroom door. It’s fun and cute to watch them, but when they bend down to take a peek at my man undercarriage and ask, “Uncle Shawn are you pooping?!” it can be quite awkward. Or likewise, when they pull my shower curtain back to see what’s going on. Then I just spray them and it becomes a game. But still. When they get too closely curious my mom shoos them away.
Now I’d be lying if I said that having to jump through those kinds of limiting hoops around the holidays isn’t annoying, or makes me mad sometimes. But at the end of the day it’s just one of those “it is what is” things that a lot of us folks with disabilities need to coordinate in order to have an enjoyable holiday. Even if it means having a few pre-schoolers watch you go potty.
Happy Holidays Everyone!
How do you alter your personal care routine to accommodate for your holiday gatherings?
Photo Source: warrenski