I have Sjogren’s…but it doesn’t have me

Sjogren's Syndrome - Like this color of purple.  Didn't know SS had a ribbon.April is Sjogren’s(pronounced “show-grins”) awareness month. I really had intended to skip writing about it since I am all too aware of Sjogren’s in my life. I didn’t really want to bring it to the surface or seem as if I’m looking for some sympathy. I’m not. Understanding? Yes, definitely.Please. (and maybe a fairy god-mother who swoops in and waves her wand to get all the housework done?)

lol! but, seriously, I do

I think its hard for most to understand anyone suffering from what’s called the “invisible illnesses” – the autoimmune disorders – because, for the most part, “you don’t look sick.”  I was diagnosed over a year ago today and I believe I’m managing as best I can. I know things could be so much worse. Sjogren’s is an autoimmune disease that is systematic. Its effects are unpredictable and can be varied for all who are plagued by it. I can’t always tell what I’m going to experience from one day to the next.

Sjogren's body symptoms

Actually, I was relieved when I first heard that this is what was causing some or most of the strange and miserable symptoms I’d been suffering with off and on for years. The fatigue that knocks me down, the painful ankles and wrists, the brain fog, the 8 months of bronchitis, the unsteadiness as if I were walking on a trampoline and the dry mouth that eventually caused me to battle thrush and throat problems.  I had a “name” to put to all the mystery and could finally start figuring out what to do from that point on. So, I researched. I read everything I could find. For a while it was discouraging until I found a book written by a doctor who’d been told her autoimmune disease was incurable and that her only hope was to treat the symptoms for the rest of her life. She didn’t accept this and began her own research. The results are in her book which changed my course. I’ll admit, it has not been easy. Change is hard, especially when it means giving up eating certain foods you’d always thought were healthy. I am now eating gluten-free.

The book I read that gave me more answers than any doctor ever tried.

Yet, there’s much more to it than that. I wish I could say that just by going gluten-free I’ve experienced total remission. But, I can’t. I’ve also discovered that my body has become very sensitive to stress. Or overworking. Or dairy…and sugar. I have to be diligent to watch for the signs my body gives me. Trust me, I pay much more attention to what I eat, do and how I think. I never understood how much stress affects a body until now. I’m frustrated that on any given day, my plans must be rearranged if fatigue decides to knock me flat. For a while, I had enjoyed life without the crushing exhaustion and it was great while it lasted. But, in my excitement at having a bit of normalcy back, I always tend to overdo. Perhaps that’s part of the problem. I overextend. I try to catch up.(Do we ever”catch up” in this life anyway?) I shouldn’t go manic crazy with the organizing and cleaning on my good days. I know better now(sort of) and am daily working on finding better ways to enjoy life and take care of my family without running  myself into an oblivion of weariness.

yes, on some days…

Here in the last couple of weeks, I’ve been struck with a different kind of crushing fatigue. I wake up feeling pretty good or what I’ve now learned to call reasonably “well.” I think that I’m going to have a pretty decent day and then out of nowhere, I get hit hard. The kind of horrible “stop you in your tracks” gotta lie down quick kinda fatigue. I have to go to plan B. Fortunately, I’ve learned that I need to have a plan B. I’ve also learned to give myself a break about it. I am not superwoman. Not even close anymore. I’ve learned when to say, “enough for today.” Sometimes I think my kids even enjoy me more on my “slower” paced days. Because those are the days I might have to forgo most strenuous housework and sit in the sun watching them play or read that extra chapter from the book they so love. It’s also the days, when we do more school work. Homeschooling them is relaxing for the most part, especially when they are enthusiastic. It brings us all closer – this wonderful home education journey…(that fact in and of itself? well, that’s another blog for another day)

I won’t say that I’m thankful for Sjogren’s. That would be ludicrous. But, I’m thankful for how I’ve learned to reassess what’s truly important. A spotless, perfectly clean house? Nope. Not even close. My children are far more important. I want to conserve what energy I have to teaching them, spending time with them and really knowing them. I never knew what it meant to “budget” my energy until now. I wish I didn’t have to. I truly do wish on some days I had some super pill that I could swallow that would dissolve all the fatigue and banish the plaguing physical symptoms of Sjogren’s. But, I don’t. I do, however, have the power of my Savior. I have drawn so much closer to Him – and desiring to live right in the center of His will for me…even in the midst of whatever I’m experiencing good, bad, or painful. I have leaned into His grace, rested on His promises and searched diligently to find the beautiful in every day. I may not understand why He allows this sickness, but I know who He is. I trust Him.

Matthew 11:28-29 - "Come to me all you who are weary and burdened, and I will give you rest... I am gentle and humble in heart, and you will find rest for your soul."

About Lisa Tompkins

child of God, writer, reader, daughter,sister, wife, mom of many, home-school teacher,pianist,singer, photographer, lover of life and really good coffee, and mixed media artist in the making
This entry was posted in autoimmune disease, current events, Difficult Matters, Gripes, Grumbles, Gratitude & Grace....., Housework, Homestead, & Home-schooling, Organized Ramblings....., Sjogren's Syndrome and tagged , , , , , , , . Bookmark the permalink.

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