Living with the complexities of Sjögrens is more than just managing our symptoms and physicians — it includes managing our emotions and expectations (our own and others). This is especially true when a Sjögrens relapse, or flare, hits.
If you’ve seen me speak or have read my blog before, you know that I think a lot about the emotional challenges we face living with a chronic illness. I’ve lived with Sjögrens for many years now; so why was I surprised when a relapse hit me last week and I had to miss a friend’s birthday party? It was a very special birthday for many reasons and I couldn’t even keep my eyes open to drive there. It’s been a long time since I was angry with “my Sjögrens”, and I immaturely crossed my arms and shouted: “Are you f&@%ing kidding me?”
Apparently, all my yoga, mindfulness and acceptance training was nowhere to be found! And it took me two days to find it. Here’s how…
Revisiting Grief During a Sjögrens Relapse
Grief is a natural and healthy process to go through when first diagnosed. There are five stages of grief (Kübler Ross) and I’ve further refined what I think grief looks like for a person diagnosed with an Autoimmune Disease. It is common to revisit a grief stage when a relapse hits, however, one generally becomes practiced at reducing the occurrences or length of grieving time when you’ve been living with the disease for many years. But even well-practiced patients can revisit grief when a relapse hits during an important event (as I did).
When this relapse hit, I had several emotions that included:
- Anger that I can’t control my relapses from hitting at important moments,
- Sadness that pain and fatigue limit my choices,
- Guilt because I have disappointed friends with a last-minute cancellation and let them down,
- Loneliness due to isolation. I plan my social events to be successful (as in I don’t plan a lot of them), so I can get lonely in between social events and especially lonely when I miss a planned event.
I am betting that these sound familiar to you.
Bouncing Back from a Relapse or Flare
Since my goal is to live well, it is important to me to get on top of my grief and my relapse! After years of practice I know what works for me. News Flash — “powering through” does NOT work!
The first line of defense is to get on top of my Sjögrens relapse and physical needs to reduce inflammation as quickly as possible. My goal is to get back to a reasonable state of functional health. My list includes:
- diet of lots of vegetables and proteins. I feel best and feel a big decrease in inflammation with no grains and no sugar in my diet. Since I really want comfort food at this time (carbs), this isn’t easy,
- gentle Yoga or Yoga Nidra,
- deep breathing,
When my emotions come into play as they did last week, I need to step up my game to move through my Sjögren’s relapse with:
- Meditation and getting centered,
- Focus on gratitude and specific things for which I’m grateful,
- Watch James Corden and Carpool Karaoke or comedies,
- Focus on Being MINDFUL, and RESPONDING to things and not REACTING (especially to my own thoughts),
- Listen to great music.
And when I start feeling a bit better with more energy:
- Do something creative (like play the piano),
- Call a FUN friend with a goal of laughter. This is usually my oldest friend Lynn, who does not like me to say “oldest”, and prefers me to say “the friend I’ve known the longest”.
So thank you for letting me vent and share. I, too, can get angry and sad at dealing with this disease. But I do try to be true to my two key life edicts (post diagnosis):
- How to live the most life I can while caring for myself, limiting relapses and achieving dreams and goals. It’s a fine balance of knowing how to hope, move forward, and measure risks and rewards of choices.
- When a relapse or emotional down turn occurs, how do I care for myself and motivate myself to get back up and start living my best life?
I hope I have given you a couple of new ideas to help you get back to your “new normal” when a Sjögrens relapse hits. Please comment and share your best tips so I, and others, can add to our portfolio of options!
You can also check out other tips on the Sjögren’s Syndrome Foundation website. Always our best source of accurate knowledge!