This blog is intended to chronicle my experiences with Polymyositis, a chronic autoimmune disease that involves the body's own immune system attacking and inflaming its muscles, resulting in debilitating weakness and other complications. I hope to provide a resource for anybody looking to others' experiences with the disease.
... which is the 5-word summary of life with Autoimmune Disease. No, fuck that. AI doesn't deserve capitalization. It's not fair. I have been feeling symptoms since late Spring, and I'm finally starting to crack, mentally and physically. Not a flare, just a slow burn of symptoms that have ground me to a halt. Not a literal halt, work is fine and activities of daily living are intact. Symptoms started in late spring when I got injured (again) with IT band syndrome. I started getting Reynaud's hands in May (May?!). All of my hair fell out, and even small peach fuzz on my face. I have a lump in my throat that is noticeable when I swallow and talk (I don't know if that's thyroid or just some esophagus swelling). I have dry nose and a weird rash around the edges, and my lips are dry scales. My back tingles often. And all of that is livable. (Except the IT bands.)
This picture is dated May 1 on my phone. May!
But the mental effects are something like this:
1) I am not myself. I don't feel sick, but I also feel a distinct departure from my well and true self. AI is as much of a robbing of your identity as it is a disease.
2) With that, I transition to the sideline, the bench, of life. I have 2 parallel lives... the one that I should be living, that I would be living. And then the actual present. The one where I lay low, put things on hold, and wait for time to pass.
3) Not wanting to be around others is a hard thing to explain, but it's a palpable symptom. I don't know what it is, I just don't want to engage. It just isn't me out there. I can't explain it.
3) My own head is a chasm of emotion, self-pity, fear, and desperation. It's too big in there, too deep. I am completely self-obsessed. It's hard to think about anything else.
4) I'm not fatigued, like tired or sleepy. But there is a kind of fatigue present. Fatigued of AI, I guess.
I have to give up my spot as a pacer for the Memphis marathon soon. I haven't done it yet, I was trying to delay as long as possible with the hope that I might bounce from this in time. I'm trying to reconcile from being heartbroken over it, and then getting a grip on myself and putting it into proper perspective.