And She’s Off..
Sjoggie-Mates..like many of you, I drag. I drag myself through my home; my workspace; my day and my life. Sjogren’s fatigue is like an unwelcome weight that has somehow been attached to my body. Once upon a time, there was a lively lady, not named SjoDry, with the energy of a puppy dog playing chase with it’s owner.
I bounced through my life with unstoppable energy and enthusiasm taking on anything and everything. I miss that me! I want that me back. Of course we have all heard the phrase, ‘change is difficult’. And it can be. But typically, change is just mildly uncomfortable. Like a job promotion that takes you away from a location you love and leaving your family and friends. Or a child going off to college. Changes that require one to make adjustments to a quickly adapted new normal. Not the life-altering change of Sjogren’s fatigue.
When trying to explain this kind of Sjogren’s fatigue to a doctor or someone else, a few words come to mind, such as: Molten lava; Pervasive and Encompassing. Sjogren’s fatigue has a depth that feels like you are being pulled under water with heavy weights on. It permeates the body in an intensity that most people will never experience, or can even comprehend for that matter.
In the past several months, I have experienced such a deep and overwhelming exhaustion, I wondered if I would ever see the old me again. I felt as if I was doing some kind of slow motion departure from life as I knew it..kind of like one of those scenes in (if memory serves) from Armageddon..where Bruce Willis floats off into the black abyss of space. Yes..Sjogren’s fatigue in my life, is reminiscent of moving through each day in a walking, unproductive coma.
I’m Leaking Vitamin D..
As is typical with SjoDry, another day, another diagnosis. This time it seems that SjoDry’s vitamin D level has once again taken a nose dive below normal. Vitamin D deficiency seems to frequently be paired with autoimmune diseases…no ‘a la carte’ here. Unlike the all encompassing Sjogren’s fatigue I have, the Vitamin D seems like a gradually acquired state, like I have a slow leak of Vitamin D somewhere in my body. And then boom..the compounded Sjogren’s and Vitamin D deficiency join forces in building a fatigue monster beyond description. My mind and body stay in a zombie state unable to focus or be productive. Not to mention the number it has been doing on my hair, skin and nails.
Enter Mega Doses Of Vitamin D
Sadly, we Sjoggies get so accustomed to trying to function at this level of Sjogren’s exhaustion, it can be difficult to recognize a condition like a Vitamin D deficiency. Unless we happen to have a blood test that alerts us to our declining D levels, we just write our state of condition off as another Sjogren’s flare.
It probably sounds odd to most folks when a Sjoggie gets happy over the confirmation of a diagnosis. But let’s face it, most of us have spent years trying to get confirmation of what is happening to us, and may still be without a diagnosis. So if one of our tests or docs confirm anything by blood test or otherwise, we are happy. It is definitive. What is even more pleasing is if the diagnosis comes with a cure/treatment. Vitamin D deficiency has treatment which happens to work fairly quickly.
A Rare Sighting
In the last two weeks, SjoDry has experienced a substantial improvement in energy, thanks to mega doses of liquid Vitamin D. So much so, that she & others who know her, have witnessed miracle moments of mind clarity, productivity, house cleaning and even meal preparation for two. These productive moments have brought with them a positive giddiness that SjoDry does not exhibit in her typical coma state. Hey, I recognize her..it’s the old me!
Clearly, Vitamin D deficiency can have a dramatic impact on one’s functioning. There may not be a cure for Sjogren’s, but there are solutions when our Vitamin D is out of whack. Perhaps, it is an illusion to think that SjoDry’s past several months of pure exhaustion was mostly caused by the vitamin deficiency or that she can maintain this satisfying level of productivity and energy…but for however long it lasts, SjoDry’s winning the drag race!
How’s your race going?
SjoDry and Cheering..