I stood there, in front of my open closet door, for what felt like five minutes. Why was I standing there. It was on the tip of my outstretched fingers. I woke up, got out of bed, and walked to my closet, but why?
This scene played out everyday for longer than it should have. Having an autoimmune disorder leaves you comfortable with “brain fog” as one of my friends puts it. You tend to get forgetful, you feel tired all the time. The list of random and weird symptoms more or less common in the AI world goes on and on. It means that I often let things go much longer than I should.
For months, maybe three or more, I stood in front of my closet at least once a day, unsure of what I was doing there. What was I going to grab? Was I going to change my clothes? Was I planning to shower and am grabbing a new shirt? Or was I going to work out and was intending to grab my yoga pants?
I repeated this process with standing up and entering new rooms. Picking up my phone or iPad, or even attempting to answer questions or remember tasks.
In short, for some reason, my brain stopped remembering.
The confusion and frustration was much more than I thought it could be. In a weird way, I now understand what it must feel like to have early stage Alzheimer’s. You know you need to remember, but you simply can’t. You know you were doing something, but you just can’t quiet get your brain to remember what.
It was frustrating to me, frustrating to my husband, and just all around stressful. I blamed the exhaustion and chronic fatigue. And finally, after months of lamenting how physically drained I was, how much more painful my knees were now that they felt bruised on the inside, and the constant inability to know what was going on finally led me to a doctors visit.
Of all the things I was prepared for, a Vitamin D deficiency wasn’t what I expected.
Depending on who you talk to, your low end of normal is 32 ng/ml and mine was just slightly below 14.
It can be lower. I have a friend who’s once got down to 9! But it’s definitely not something we think of when we, collectively as healthy adults, have exhaustion. And it never occurred to me that it might be a factor. I was lucky to have a doctor who checked just in case. And while I may not be cured of the “normal” Spoonie brain fog or chronic fatigue, maybe getting my levels normalized will help at least some of it.
The unusual lesson from all this is that it is so very easy for those of us who are chronically ill to always assume that anything new or worsening is just par for the course. And Seronegative Arthritis is not well studied so I often am left feeling that no one would know if it was normal anyway. But so many of us, no matter what the illness, have such similar symptoms, all of which are sort of non-descript, so it can be challenging to know when to actually worry.
I have started special supplements and am hoping to feel better soon. I still stood in front of my closet today for five minutes unsure of what had compelled me to approach in the first place. I have wandered around the house in loops trying to remember why I got up from the couch. And who knows, maybe I’ll always have that happen. But I’ve definitely begun learning that, in the autoimmune world, it’s better to tell your doctor and worry you are overreacting than it is to wait and learn the hard way that you aren’t.