I have been debating whether or not to delve into the more…serious aspects of my life/the components which make up my current self, but keep prying it off. Partly out of not wanting to “whine”, partly out of embarrassment, not wanting to seem somehow weak or whatever… I don’t want people’s pity, I have a seemingly genetic inability to accept or process any kind of “positive thinking” or silly “hang in there” type mantras, but it’s the sort of stuff which …ugh, whatever. I’m even already tired of hearing it and I haven’t really said/typed anything yet. Hmm…
Instead, here is the mini-version (despite it still being rather lengthy) of my situation, in chunks, starting about 5 years ago. Some may know parts of it, some know none. Perhaps I feel the need not only to lance the boil so to speak, but to also provide some exposition as to why I am how I am now. I’m doing it in sections due to my apparent inability to stay focused on constructing coherent sentences for any period of time, so if there appear to be sudden textual mood swings either inter- or intra-section, that’s why.
I’m sure parts of this have already been written, if not the entire thing; chalk it up to my desire to just get it done so at least I know it sad been done, as well as having it as a reference to compensate for my selectively HORRIBLE memory nowadays. Who knows when I’ll need (or want) to remember something seemingly hard to forget, just to find out that I managed to do just that. Anyway…
Let’s see….Here’s what’s up as of today. Because it doesn’t tend to reverse suddenly, I more than likely still have pernicious anemia, meaning my body doesn’t absorb vitamin B-12 (aka cobalamin) as well as it should. Vitamin B-12 is apparently needed for the repair and/or construction of nerve cells (the myelin sheath I believe), so my nerve cells hit some point in the past where they just started … breaking down, deteriorating, something akin to that. Something about the intrinsic factors in my stomach deciding to be lazy and not ferry the B-12 I get via my stomach to where it needs to go. I give myself monthly B-12 injections in order to keep things from getting much worse.
While the pernicious anemia itself isn’t directly noticeable in my case, the resultant nerve damage sure as hell is, and I still struggle with the subsequent peripheral neuropathy in both legs. People with a bad case of “the diabetes” sometimes get the same thing – fortunately, I’m not diabetic, nor pre-diabetic, but I’ve got a great reason to make damn sure I don’t become diabetic.
On a scale of 1-10, I am always at a pain level of 2 or 3; it’s kind of like white noise, always in the background although one may be used to it so it goes largely unacknowledged. 2-3 is my “normal” state now; it often will go to 5 or 6, and a few-yet-still-too-many times it has spiked up to 8. If it gets to 9, I go to the hospital; I haven’t had to do this more than once. So yeah, it hurts, but constantly hurting kind of tires a person out after a short while, so my energy levels are kind of crappy as well. Lovely 1-2 punch there.
Nerve pain is incredibly difficult to accurately describe, but there are a few keywords which seem to pop up often when people do describe it. Words like tingling, stabbing, burning, crawling, radiating (spreading outward), etc. I experience a constant soreness, random tiny isolated muscle spasms, and feeling like there’s a colony of electrified ants crawling underneath my skin. It isn’t pins-and-needles like when someone’s foot is asleep; it’s almost like if those pins and needles were able to flow like water and are going through the veins in my legs. And yes, Philip K. Dick did actually write a short story entitled “The Electric Ant” … guess I’ll have to read it now.
As I’m sure you can imagine, being in pain is extremely tiring and frustrating. So add on to that things like fatigue, depression, and it being extremely difficult to be in a good mood (or rather, not in a bad, distracted, or burned-out mood) most of the time. It’s much like an animal who gets sick – I just want to be left alone, with as few things requiring more than robotic attention as possible. However, I hate things which only require robotic attention (like only watching TV), so I have to find that very ,very small number of things which seem intellectually engaging, but don’t really require a whole lot of retention or higher brain functions. Or at least that’s what it feels like.
And what do you know, look what Wikipedia says about B-12:
“At levels only slightly lower than normal, a range of symptoms such as fatigue,depression, and poor memory may be experienced”1
But that’s not all! “Vitamin B12 deficiency can also cause symptoms of mania and psychosis.” 2 I believe I’m relatively in the clear for this one, but the memory and overall cognitive issues are definitely noticeable. Roll with the punches,I suppose. I’m still physically better off than some, and for that I am grateful. However, this…issue has completely changed my life in less-than-desirable ways, and at times can be so debilitating that I still don’t fully believe that it is real. I think “it must be something else, do I have some sort of subconscious Munchausen syndrome sort of thing? Or maybe it’s muscular and not nerve-based!” But no, after 5 years or so of doctors, triple verification of all the tests, and perhaps most of all, the physical symptoms, there is little doubt in my mind of its reality.
Well this has been in draft mode long enough. I’ve decided that even if it means I do end up whining a bit, I’m going to continue on with this “series” as well as just not worry about it too much. I’m doing the best I can with what I’ve got, and who knows? Maybe some random events sparked by these entries may lead to more opportunities to find solutions. I guess I do have at least a little bit of that thing people call “hope”, despite the concept being difficult for me to grasp at times.