This is the third blog post to recreate my keynote speech given at the 2016 Sjögren’s Syndrome Foundation National Patient Conference April 8th and 9th in Seattle. You may want to read previous posts about the speech: Relapse to Reinvention and 10 Stages of Autoimmune Grief and Life. This post is intended to help you Define Your Autoimmune Stage Clearly.

If you are reading this article, you are probably living with an autoimmune disease or you love someone who does. One of the most important aspects of living well (or as well as you possibly can) when you have a chronic illness is to be very honest and very mindful with yourself. It’s the only way that I’ve found to be effective at managing the disease, avoiding as many relapses as possible, and living a fulfilling life.

I love the word “mindfulness”. In general, it means the honest recognition and acceptance of current thoughts and feelings with the goal of reaching a place of greater good. For autoimmune people, we also need to add being mindful about the past: what causes relapses, what helps us feel better, where do we get stuck, etc. There is much research on mindfulness and how to apply it as a meditative, psychological, or (even) business practice, but I am using the term more generally. I try and practice mindfulness so I can accurately recognize my autoimmune stage and either grow to a better state or maintain the great state I’m currently experiencing. Mindfulness may be the best tool to help define your autoimmune stage accurately.

As a person living with Sjögrens, mindfulness is a critical practice because I need to measure changes by inches — not miles — in order to define my autoimmune disease stage clearly and live as well as I possibly can. And this is where it can be challenging, especially for people who have not been managing their disease for very long.

Where Am I, Honestly, with my Autoimmune Disease?

When I say “Where am I, Honestly?”, I’m not only checking in with my denial system, but I’m also attempting to fine-tune my understanding of my symptoms, emotions, and history. This is a process of learning what is an “inch” measurement and what is a “mile” that needs greater clarification.

Here is an example of me measuring by a mile:

Q. How do I feel physically, today?

A. I feel OK. I can work a full day and if I stretch at lunch, I’ll be OK, I think.

Here are two examples of measuring by an inch:

Q. How is my inflammation today? My hands, hips and feet?

A. It’s moderate. Right hand is a bit more aggravated than left. Hips have moderate pain. I can prevent further inflammation by heating my hands in warm water every two hours at work and do hand and arm stretches every 30-60 minutes. I will need to stand and stretch throughout the day and take a 30 minute walk at lunch. History shows if I do this, I will work successfully today with limited pain and no additional aggravation tomorrow.

Q. How is my Dry Eye Today?

A. Pretty bad today. I need to set my timer to place eyedrops in every 30-60 minutes to keep extreme dryness at bay. Also apply warm compresses three times at work and in the evening. If I use gel tonight instead of drops, I should be able to get my dry eye back to moderate tomorrow or the next day.

The more detailed I am about how I really feel the better I manage my disease. Personally, I found this practice challenging because I’m actually a big-picture thinker and not a highly detailed person. But after practicing this level of detail for awhile, it has become second nature. I need to make sure I do this every few days, however, so I can stay mindful about my Sjögrens Syndrome.

Consider Duality to Define Your Autoimmune Stage Clearly

You may want to quickly review the graphic from last week’s post to remember my 10 stages of Autoimmune Grief and Life.

Living with an autoimmune disease isn’t a walk in the park, that’s for sure! It is a constant balancing act of trying not to push yourself too hard and cause a relapse, or not strive at all and leave opportunities on the floor.

The two biggest questions that I have in my Sjögrens life?

  • How do I EASE UP and not GIVE UP?
  • How do I STRIVE and not OVERDO?

When I started focusing on these questions, I started seeing the duality of my thoughts. I consider this another example of mindfulness and a practice of assessing my emotions and the impact of my actions. For example, if I strive a little bit at a time until I sense I am on the edge of causing a flare, I know to back off a little bit and then maintain that level of striving. It certainly depends on my disease activity at that point in time, but again, it is a process of measuring inch-by-inch so I can get the most out of life yet not cause a relapse.

Here are some other examples I presented in the speech:

  • ANGER as a motivator or debilitating (and may need help moving through it)
  • DEPRESSED emotionally or clinically (and need to seek medical support)
  • DENIAL helpful to get through the day or harmful (and in need of outside assistance)
  • SELF EMPATHY vs self pity (self pity usually doesn’t help me at all)
  • Am I using Sjögrens as an EXCUSE or is it an accurate assessment.

I hope these thoughts and personal experiences help you define your autoimmune stage. Once we define where we are, we can better understand how to move to a better place.

If you have any thoughts on how you assess and manage your autoimmune disease and life, please feel free to share!

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