Living with Chronic Pain and Chronic Fatigue: Coping in Baby Steps

By: Aviva Brandt, editor, Sick Momma

March 21st, 2008 • Living with Chronic PainPrint Print

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.

Aviva L. Brandt, a freelance writer and editor who worked for The Associated Press for 15 years, currently blogs at Sick Momma. She can be reached at aviva@ipns.com.



Comments

Greg Katz April 3rd, 2008

I think you exhibit tremendous courage. Thank you for sharing your struggle and the solutions you come up with to overcome the struggles. It sounds like you’re becoming more intimate with your body and the disease. As someone who also has an autoimmune disease (challenged for the past 30 years) you become much better at hearing your body whisper what it needs and then you can respond.

Keeping your friends and family in the loop by educating them will make the difficult times more understandable. For those who do not deal with medications, side effects and doctor visits it can be hard for them to have empathy and we certainly don’t need sympathy.

Your pilgrimage to wellness will be a lifelong journey and I’m grateful to bear witness to your process.

chatrooms December 22nd, 2009

Fantastic post! love your blog

Nathan B November 24th, 2013

Reading this is like reading a page from my life with subtle changes.  It’s very difficult to be out and social for long without being worn out and just, ‘done’ long before anyone else is ready to pack in.  I always feel like a killjoy so I just don’t go out most of the time.  I’ve even had my wife blame me for her lack of a social life.  I have never told her she can’t go out with her friends or stay at a party when I need to leave, but it is what it is.  Despite that, it still hurts to hear and it really sucks to have to always be the first person to leave a social function.  I feel your pain.

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