I simultaneously love and fear the holidays. Holidays mean family, parties, friends, plans, schedules, decorations, lights, social obligations. Notice how that sentence derailed toward the end? The train shook itself off the railroad tracks and ended up careening off a cliff.
Social obligations can mean trials and tribulations for the chronically ill. Chronic pain is a form of chronic illness — sometimes invisible, which can make it all the more difficult. For those who are young, like me, it can be even harder. Not only are we supposed to be having fun, but we look totally normal. Why would we need to sit down, lie down, go to a quiet room, take a nap, or take some meds?
Spine problems are all-encompassing. A cervical injury can shoot up into the head, along the arms, and into the hands. A lumbar injury can cause tingling and numbness in the feet, and pain in the legs and hips. A thoracic injury affects the trunk of the body, burning around the ribs, up and down and everywhere. On a good day, I can smile and interact like a normal human being, though the pain buzzes in the background like a cluster of bees around my head. On a bad day, I have to ditch the crowd and lie down, floating on narcotics until I fall half-asleep. On a very bad day, I have to ignore humanity and stay home, trying to have nothing even touch my skin.
Handling the holidays can be difficult. Enjoying them takes preparation. For those of us with chronic problems, it makes sense to prioritize. As the incredibly wise Toni Bernhard said on her blog, “Turning Straw Into Gold,” try to find joy in what you are able to do. Mrs. Bernhard is a practicing Buddhist who used to work as a law professor before she came down with a mysterious illness. More than a decade later, she’s still sick and nobody can tell her why. Her Buddhist perspective has helped her learn to understand her limitations and shape her life in new ways.
I know that I’m scared for what the holidays will bring; I want to participate and spend time with my family, and the last thing I want to do is disappoint anyone. Husband and I will be traveling to Ohio so we can spend Christmas with his parents, brother, and many relatives.
I’ve never spent Christmas at their home, and I want to make sure I can do as much as possible with them. This means prioritizing. When I get there, I’ll have to lie down and recover. This will give me strength for activities later on in the day. I’ll be seeing “Mary Poppins” with his little cousins, which means 2.5 hours in a hard-backed theater chair. Afterward, I’ll need to rest again. It’s a juggling act, which by no means indicates that I won’t have a grand time when we flee to the Cleve. (That links to an especially grainy bootleg video of “30 Rock” and their amazing Cleveland segment.)
(Another side note: I love Ohio. It’s where I met Husband. We both went to college at Ohio University [NOT OHIO STATE UNIVERSITY, GO BOBCATS, SCREW THE BUCKEYES, though my cousin is currently a surgery resident at OSU — love you, Brittany]. Husband’s family still lives in Lakewood, Ohio, which is a suburb of Cleveland. The city is fantastic. The state is beautiful. Everyone should go there at one point of their lives. Cue end of public service announcement.)
My point is that with appropriate planning, holidays don’t need to be a source of stress for the chronically ill. Check out Toni Bernhard’s blog, since she’s far more intelligent than I am and has presumably already worked through any towering rage she might have regarding her situation. With any luck, someday I’ll find the perspective she has.
Here is my holiday game plan:
- Make sure I have enough meds to travel with.
- Bring my back brace, TENS unit, Cryoderm pain gel, and back rest for chairs.
- Pack my cervical pillow.
- Be prepared to say “no.”
That’s the kicker. Saying “no” is always so difficult, especially when you’re turning down people who just want you to have fun. But in order to make it through a holiday trip, you have to hold firm and take a break if you need to. Remember to maintain boundaries and protect yourself. Nobody knows your pain better than you do.