Family & Relationships

Making a Commitment While Living with Lupus

The reminders of just how limiting life with Lupus can be are all around. How can you forget when what others consider simple, everyday tasks become too painful or exhausting for you to do? You do get used to it, for the most part. Unfortunately, I have yet to get used to how it affects my ability to make a commitment to something I want to do. Be it committing to drink more water or deciding whether or not to commit to becoming part of an organization, I have to decide if it’s worth the effect it will have on my Lupus body, mind, and spirit….  **



One word to describe my Lupus body today:  Tired

Which habits and rituals did I practice to soothe my Lupus body?

  • Breathed fresh air
  • Stayed hydrated
  • Protected delicate skin
  • Smiled and laughed

More details about my physical symptoms:
Recently, I discovered a theory that autoimmune illnesses are possibly worsened by chronic dehydration. It’s found in the book entitled “Your Body’s Many Cries for Water” by F. Batmanghelidj, M.D. The book has been around for a while, and the advice about drinking water is certainly not new. But what got my attention were his ideas about how dehydration affects us on a cellular level and what the body does to conserve water, reactions that lead to chronic illness if not taken care of. So, on October 4th, I made the commitment to myself to start drinking 64 ounces of water, faithfully everyday. It wasn’t easy in the beginning, but I’ve been successful, thanks in part to my Waterlogged app for iPhone. So cool with its reminders that sound like water. (When Hubby hears it, he says, “Your phone is flushing!”) After just about one and a half months, I’ve begun noticing that my eyes aren’t so dry, and my skin looks better. Even some of my cysts are shrinking. Maybe it’s a coincidence, I don’t know. But, I’m hoping that it affects my muscles and joints in a positive way.  That’s the good news. The problem with drinking so much water, especially if I don’t start early in the day, is that I wake up multiple times throughout the night to empty my bladder. It’s like being pregnant again. It’s hard enough to get to sleep with all this pain, but then to have to get up, painfully walk to the bathroom, then try to get back to sleep. I’m tired enough already because of Lupus without adding another reason. I’m just going to have to adjust when I drink the water, and hope my body gets used to it.



One word to describe my Lupus mind today: Conundrum

Which habits and rituals did I practice to strengthen my Lupus mind?

  • Managed stress response
  • Managed expectations
  • Asked for and accepted help

More details and thoughts about how I’m feeling emotionally today:
On my mind tonight is how to respond to an invitation I received last week. I attended my first rotary (community volunteer organization) meeting last month, and I was so excited to be out and about again among professional people around my age. The meeting went great, and I guess I impressed them too because they actually invited me to join the club. As usual, though, I have to consider how I felt after the first meeting. And, it wasn’t good. I was exhausted physically from the simple task of walking to the banquet hall and back from my car; and I was exhausted emotionally by all the excitement of meeting new people and having to be so alert. (These meds I take are pretty strong, and people don’t realize how they affect your ability to interact.) So, I have no option but to be very careful about what I commit to. I feel like if I make the commitment to join, I’ll let them down when (not if) Lupus decides to prevent me from doing much; or if I decline, I’m not sure if I’ll ever have the chance to spend time among my peers again. It’s a conundrum for sure. Thanks, Lupus.



One word to describe my spirit today: Waiting

Which habits and rituals did I practice to nurture my Lupus spirit?

  • Meditated, prayed, visualized
  • Cultivated creativity
  • Enjoyed sacred space

Thoughts about my spiritual connection and spiritual lessons learned today:
When I’m not sure of the next correct or best course of action regarding an important decision, I turn up the volume on my meditation to try to “hear” the answers. The conundrum about my desire to step outside of my limited routine to commit to the rotary club versus the reality of my inability to keep up has got me waiting for answers. I guess I have to be patient, as usual. So, I wrote a bit today, tweaked my website, and painted a little to just be with me. That’s one commitment I can handle.



Today my meals were:

  • Breakfast: Chicken apple sausage, scrambled eggs (both organic)
  • Lunch: Homemade chicken broth, sliced turkey sandwich on gluten-free bread
  • Dinner: Fresh oven-baked salmon, dill and lemon rice, steamed broccoli
  • Snacks: Gala apple
  • Water: 68 ounces



At least one thing that I’m grateful for today:

  • A refrigerator full of wholesome food 🙂
  • Patience

**(This post is based on the format of the Lupus Diary that I developed for keeping track of how Lupus affects my body, mind, and spirit, I check-in here once a week to let you know about the more interesting days of my Lupus journey. To learn more about the Lupus Diary, how I developed it, and why I use it, click here.)

You Might Also Like