Subtlety is the word. For many people with tick-born illnesses, this describes the outward appearance and the difficulty in detecting that something is wrong or "off." I cannot claim that. Instead, it best describes changes and potential improvements in my situation. No great leap forward has appeared. My balance still is dysfunction to non-existent. I spin out. I fall down. I miss a chair. Perhaps these things occur less frequently, but they still happen. Does saying that I can stand in the shower while less frequently holding onto a railing or a wall sound like an accomplishment? Does reaching 125 moves on a Flash Pad memory game (albeit not consistently) sound like something of significance?
Welcome to my world.
Frankly, as much as I say about it, there is much I do not say. I keep a lot of it to myself. I don't think it is entirely sharable or knowable or easy to articulate. I don't really own it (it owns me, basically), but if I did, it would be one of the few things I currently own. And I cannot make "normal" the bottom line for me, largely because I am not in a "normal" situation. "Normal" people cannot understand. The person I used to be does not exist. She was a nice enough person, but not tough enough. She wanted to do things, believe in things or people. I don't. Since I cannot live that life or be that person anymore, I do not want to make plans or do things or generally talk to people. I don't see the point. I have nothing to say. I am essentially an ahistorical entity. Standing largely outside of chronological progress (and thus you recognize the embedded irony of my title), I am well aware that other people get new jobs, have kids, live. I am not part of that. I cannot hide from that reality, of course, but I do not need it constantly put under my nose, either. Living (if you can call it that) is frustrating enough given my obvious limitations -- as well as ones I do not commonly document. I prefer not to be bothered by what other "normal" people think I should be doing or by them telling me about what they're doing. It's better as an abstraction in the distance somewhere.
I suppose part of the problem of having to deal with my situation is my reluctance to say a great deal about the minutiae of my quotidian reality. First, it doesn't wholly translate. Second, certain people should not be told too much (e.g., my mother; am I sparing details or sparing myself from having to answer follow up on follow up questions and second guessing -- likely both). Third, it preserves a shred a dignity to tend toward stoicism, even if it's in my own mind. Fourth, subtlety is impressionistic. Should I keep a diary? I doubt I have the patience for it, or the desire to actually record this -- as if I will ever want to read it again. If I had the determination to write something lengthy and ongoing, it wouldn't be that.
It is possible that a lactose intolerance holds me back, based on my last LLMD visit. That is, I find a lot of gas and possible gas bloat in my digestive system. I will merely say that when this is added to being in a car, I often cannot get to a bathroom quick enough when I arrive someplace. Why? I am not having dairy as food. Apparently, some supplements, especially probiotics, originate from dairy sources. This is going to be tricky to find a reasonably priced source that has no dairy origin.
I did obtain a new ankle-foot orthodic (AFO) device. The spring loaded element behind the ankle seems to be very helpful in walking, though I think the weight on the device is a bit surprising. It's hard to fathom how a device that does not extend to the toes keeps the toes from scraping the ground when I walk but so far so good. I even get four physical therapy sessions to get comfortable using it. I also will have access to an outpatient facility to continue care when I'm done, versus being left to my own devices the rest of the year.
I even discovered the source of the computer duplication that caused my monthly prescription drug order to initially get rejected, causing me to have to call the insurer. Thought I finally got all my ducks in a row and I could just pursue improving my health. But no. When my Ob/Gyn referred me to a physical therapist who specifically would address the pelvic floor area, I had thought I had sent faxes and had coverage. Friday I learned otherwise. Blindsided. I do not see how I can have anything like a normal working existence without that being improved. My insurer does not indicate on its web site how to find someone who works with that. Seems I'm about to embark on another "adventure" with the insurance company. Nothing makes one a fan of single payer than going through this hell for months -- as well as hearing the stories of providers who endure the same thing, which is the insurer getting in the way of patients getting treatment and providers offering treatment.
My day in court over my SSDI claim finally comes in a few weeks. It's only been about 18 months since I applied and got two rounds of rejections on paper. A judge will have to tell me to my face (and the lawyer's) why I do not qualify. I would gladly take a provisional approval. I'll be glad to cease a claim when I get a job. I'm sure the "witness" they call (who has never met me) will say I can work. That's nice, but the evidence of it is sorely lacking. I've been working with the Division of Vocational Rehabilitation for over six months and still no job. I've done everything asked of me. Nothing happens.
Story of my life: nothing happens. Been that way for quite a while. It's Seinfeldian. It's frustrating. The blank rune stone is described as both "pregnant" and "empty." Yet the two resemble each other way too much for me to be sure if either accurately describe my situation.