There’s something about living with chronic pain and chronic fatigue that triggers memories of my adolescence that I’d rather forget, especially that burbling resentment aimed at The Powers That Be.
Of course, during my teenage years, those Powers That Be were mostly my parents, who like almost all parents, imposed rules such as curfews and the need to ask permission before going out or taking on any new activities.
But these days, it’s not my parents, or God forbid, my husband, or even my 3-year-old daughter who is imposing these restrictions on me. It’s my illness, and the chronic pain and intense fatigue it causes.
Recently, a few good friends — who have made a point to stay in touch and visit me through the many months since I first fell ill — made plans for a Mommy’s Night Out. Because they understand my limitations, they made plans to pick me up and drive me to the patisserie we chose.
I’m unable to drive at night because of my need for pain medication. I can manage it in the mornings, although even then it’s a struggle on bad days, but by evening time, I’m always in enough pain that I have to reach for the bottle of Percoset.
We had a great time laughing and chatting over the most decadent of desserts. My three friends all had alcoholic beverages to complement their desserts, but I was perfectly happy with one of the best hot cocoas I’ve ever had.
Sadly, I began to feel my pain levels kicking in, and as a result, my energy levels fading. Hoping to postpone the inevitable, I popped a pain pill. Still, a little while later, I had to interrupt one of the best evenings I’ve had in the past year to say, “Sorry, guys. I really need to get home. I’m past my limit.”
As I did, I flashed back to when I was 17 and attending a holiday party for co-workers at the electronics store I worked at. I was the only high schooler in the group, and I was just mortified when I had to leave before the meal was over because it was a “school night” and I had a 10 p.m. curfew.
My co-workers, who were mostly in their mid-20s to 30s, laughed and teased me as I left. I cried as I drove myself home and got my first and only speeding ticket for driving 49 mph in a 35 mph zone. I was crying so hard when I was stopped that the cop felt sorry for me and tried to tell me I didn’t have to tell my parents, but of course I did.
Back to modern days, I felt a sullen resentment that evening as we filed out of the crowded patisserie and headed back to the minivan. This time it wasn’t my parents imposing a curfew on me, but the illness and chronic pain that I continue to resent with the intensity of a teenager.
As I approach the one-year anniversary of when I got sick, it hits home to me every day that my illness is much stricter than my parents ever were. And although I didn’t appreciate it properly when I was a teenager, at least my parents were reasonably consistent in enforcing their rules.
The problem with my illness, which doesn’t even have a definite diagnosis but appears to be an autoimmune disease, is that the limits are fluid and what was possible yesterday might not be possible today but maybe will be again next week. I’ve gotten pretty good at predicting what will exhaust me beyond my limits for days, but haven’t figured out a way to save my limited energy so I can do something later in the day or later in the week.
On a recent weekend, I had promised my daughter, Ellianna, that I’d accompany her and my husband, Scott, to Tot Shabbat, a synagogue service aimed at the under-5 crowd.
But Saturday morning came and I realized that if I went to Tot Shabbat, I wouldn’t have any more energy for the rest of the day. So I promised to rest while they were at services and accompany them that afternoon to Ellianna’s favorite museum.
But it didn’t work. By the time we finished lunch after they got home from Tot Shabbat, I could barely keep my eyes open and I needed another pain pill, so I sadly headed back to bed while they went out to play. What happened to that energy I “saved” by missing Tot Shabbat? Who knows. It certainly didn’t stick around for the afternoon.
I’m working on learning to accept and cope with these limitations imposed by chronic pain and chronic illness, but it’s all just baby steps. I have to keep reminding myself that I’m coping better than I did earlier in my illness and believe that things will get better.
In the meantime, I find encouragement in reading about others’ successes in mastering their illnesses and creating a life beyond their diagnoses, and I try to remain hopeful that one day I, too, will be able to do that.