Abusing your "good days" with lupus - how not to fall into the trap!

This is my first Fall going to Aldi. Boy, do they know how to do it up!

At one point, I had pumpkin spice almonds, pumpkin caramel corn, maple peanut butter, pumpkin pie greek yogurt,  pumpkin chipotle pasta sauce, pumpkin goat cheese, pumpkin yogurt pretzels, and pumpkin spice soup in my cart. I went a little pumpkin 🎃 overboard! 

Once I came to my senses, and put a few things back (make that a couple, or was it just one?!) - I was reminded how easy it is to overdo, and how quickly one can feel overdue once we do too much. (You can thank my daughter Deirdre for the word play.  Her spelling lesson this week included these two homophones!) 

But remembering back, during many flare-filled weeks and months, day after day, I felt awful - in horrific pain, with swollen joints, experiencing absolute exhaustion.  

And then, behold, a day would come - sometimes out of nowhere, others because the medication had finally kicked in - when I felt half-way decent. I could actually take a shower without resting afterward. Or brushing my teeth didn't bring tears from the pain. I would delight in the symptom-reprieve, knowing, however, that it might not last. In fact, believing that it wouldn't,  I would make up my mind that this was the day to get things done. I was feeling good, the meds were in full force (usually the prednisone), and it was time to accomplish. 

But, oh, how quickly I would overdo it. Too much, too soon, and too quickly. It was such a pattern with me. I would set myself back for another few days - now not recovering from just the flare, but also how spent my body was. 

I wish I could say that it only took a couple of times of overdue-ness before I wised up. But I pushed for a long time. Like several years too long.

But then I stopped. I realized the goal was not to run myself into the ground on the "good  days - to run out of "spoons",  as they say in the spoonie community.  It was to actually pace myself, so that every day had the possibility of becoming a good day. And it worked. 

Giving myself room to breathe allowed for healing to take place. Or at least to begin. It wasn't two steps forward, one (or three) steps back, day after day. It was one consistent, deliberate baby step at a time. 

But those steps added up, and hours became days which became weeks where my disease was managed.  I actually could do more - maybe not at the pace I used to - but definitely with more predictability and constancy.  It became clear that the most efficient and effective route to living well was this one. 

Any thoughts on how easy it is to abuse your "good days"? Or maybe you have tricks for making sure you don't.  Share if you feel up to it!

Comments

Unknown said…
Hi Sara
We haven’t met but our husbands know each other. I look forward to meeting you soon! I work full time at a job that is stressful and high energy. I love what I do, but I push myself so hard at work that I come home beyond tired. I knew this couldn’t last, so I have cut my full time hours to 32- just enough to keep the benefits, and have taken a part time job that is much lower key for the remaining 8 hours a week. That helps. However, If I have any extra energy I find that I run around like a maniac trying to get everything done that has fallen by the wayside. This often backfires and makes me unable to do the simplest things. Reading your book and blog is helpful- I see that you feel what I feel, and that it is not unusual to be tired, nor is it a character defect.. I can give myself permission to rest. Health care providers have a culture of pushing through and never showing weakness, and it is hard not to get sucked in to that mindset.
I am off today, and I am having a lot of pain. I made a decision that I need to accept it, and listen to it, instead of feeling guilty about it. I just went for a walk. It was short, but it was outside in the fresh air. I also do Pilates, and that helps. What hurts today may be completely gone by tomorrow. I am lucky (like you) to have a supportive spouse!
Thanks for publishing your book and blog. It’s nice to hear about someone that gets it.
Hope
Anonymous said…
Hi Sara,

Thank you for this beautiful post. I was diagnosed lupus at the age of 13 and now it's 17 years, the fight is still on. Nowadays, I go to bed with lot of pain and wake up with a smile that is not so broad yet enough for my family to keep them motivated. Your posts empathize a lot, and now I start my day at work with a huge hope to end it painlessly. I know it's impossible when I'm crossing 30, but I have gathered this emotion that "Pain is in the mind", the psychological feeling which is helping me a lot to fight my lupus days.
Thanks for publishing your work and inspiring others.
Hope

NM
Sara Gorman said…
Hope - I, too, look forward to getting together! Thanks so much for sharing. To me, giving ourselves permission (to heal, to rest, to compromise) is a HUGE part of living well with lupus. I actually do a whole workshop on the concept of Permission! I realized quite some time ago that KNOWING the healthiest choice to make and actually allowing yourself to make it are two separate steps. :) So nice to hear a bit of your story, and see you taking monumental steps to improve your health. You will inspire others by sharing! Take care - SG
Sara Gorman said…
NM - Thanks so much for your comment! Pain is such a tricky thing. It has a sneaky way of infiltrating our whole being - mind and body. Allowing ourselves to recapture at least the emotional side of it has to be a step in the right direction! And I think the goal of a pain-free end to the day is a wise one. I know my decisions at this point of the day truly impact how I'm going to feel in 6 hours. I just have to remember that when I want to cut corners (i.e.overdo) mid-day! My sincere thanks for chiming in. Really appreciate your kind words!
Sara Gorman said…
NM - Thanks so much for your comment! Pain is such a tricky thing. It has a sneaky way of infiltrating our whole being - mind and body. Allowing ourselves to recapture at least the emotional side of it has to be a step in the right direction! And I think the goal of a pain-free end to the day is a wise one. I know my decisions at this point of the day truly impact how I'm going to feel in 6 hours. I just have to remember that when I want to cut corners (i.e.overdo) mid-day! My sincere thanks for chiming in. Really appreciate your kind words!

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