This is my brain on Lyme Disease…

Had another doctor appointment yesterday. It did not go so well. I don’t think my doc likes me much. I apparently was a big pain and no help at all. Problems with being decisive on whether symptoms were better or worse, etc (to him the problem was lack of decisiveness, for me the problem was: I couldn’t TELL if there was any better/worse). Of course, if he really KNEW me (not that I expect him, to, but you know what I mean…) that alone would have been a big clue that NO, I’m not any better.

The last few months some of the most crippling symptoms I’ve had in terms of getting anything done or functioning on a basic level have been:

  • the inability to communicate verbally (it’s like the pathways from brain to mouth are tangled or closed completely in some cases)
  • the inability to prioritize (for ex. what is the first thing I need to do?, what is the biggest problem I have? , what needs to be taken care of next? etc)
  • the inability to make decisions (and this kinda goes with the prioritizing in a way…) about anything no matter how big or small… and NO this did not use to be a problem for me

Hey lookee!! I just ‘got around’ the not being able to prioritize thing a little, by making this little post. How cool is that? I wish I could do that more often. =( Anyway. These symptoms (especially the communicating one!) are far and away worse when it involves my mouth/speech, ‘on the spot’ or ‘quick’ situations, or when dealing with other people (whether family, friends, professionals, etc.).

In PRINT form I do a little better. That is, if I can sit down just me and the keyboard, I can generally spit out (via my fingers) what I am trying to say…eventually… it just will NOT come out through my mouth, and definitely not in an “on the spot” kind of situation…like a normal conversation. It takes lots of slow, deliberate concentration and lots of had work to get it spit out of my mouth. That doesn’t really work when you are in the middle of a conversation of any sort. =(

The bad news is… typing is fine, but not very practical in a minute-by-minute kind of way. Especially if you factor in the joint and/or muscle and/or bone pain I have (because even though typing might make the communicating a little easier, the fingers/hands aren’t always able to cooperate immediately). The numbness and tingling I get in my hands/arms off and on also makes it more difficult. And then, of course, there is always the problem of the keyboard not always being available to use.

I don’t know about you, but I don’t make a habit of carrying a laptop (that I don’t even have!) with me to church in case someone wants to ask me a question… or to the dr appt so I can better discuss symptoms and medication issues (although possibly I SHOULD in this case????)… or to the… ok, so I can’t come up with another example right now. That’s because any more these are really the only places I go. No stores, no library trips, no restaurants (unless Mike is there to take care of the speaking for me), no anything. Doctor appointments and church. That’s it right now.

The unpredictableness (is that a word? it should be!) is way it is for everything, actually. ALL my symptoms are come and go, off and on, random, sporadic, intermittent, no rhyme or reason, or however else you want to say it. Simply put, at any moment of any given day I can have any combination of a HUGE list of symptoms… and then 5min later the combo might be completely different.

Yes, there are some things that if they are a problem on a particular day tend to stick around most of that day, but even those are not generally every.single.second.of.the.day. The brain not working/thinking right is a real good example of that. On days when this is a problem (most days), most things involving thinking are pretty much no-gos for me all day… BUT since it is generally not an every.single.second kind of thing, there might be a time or two during the day when the brain works well enough that I actual have a 5min ‘normal’ conversation… or I can actually get all the way through a certain task with relative ease (like figuring out how to make a phone call and make a doctor appt for one of the kids).

One of the more frustrating aspects is that even these momentary clear-thinking spells are unpredictable. Not only in terms of WHEN they will happen (so impossible to plan tasks to coincide with them), but also in terms of how long they will last. Some days I’ll have several minute-or-two long spells of feeling clear-headed, and other days I’ll have maybe one or two times but each one is 30min-or-more long.

In case you haven’t figured it out yet… *grin*… the posts on this blog happen during those spells of clear-thinking that have lasted long enough for me to go “oh! I’ll go get a post written up real quick”. Sometimes, the clear-thinking lasts long enough to finish a post, and other times I can feel the brain shutting down and so I have to break it off and go back to mindless roaming through the house…

…like now.

In the middle of that last paragraph, I could feel the clarity go bye-bye. All of a sudden stringing the sentences together was much more difficult. I started making multiple spelling mistakes (at least the computer helps me catch and correct them…), and I started having problems remembering what I was going to type next. It’s probably taken me as long to type these last two paragraphs as it did to write the whole rest of this post. Pots. That’s what I typed first on that last word. That’s funny… though I don’t know why…

Over and out for now… try to pop back in during the next clear spot.

***update a couple hours later***

Immediately after posting this I got a note from a gal who has dealt with speech issues before and offered me this tip: carry pen and paper with me so I can resort to writing things out in a pinch.

DUH! Why didn’t I think of that before?? Easy. Another big brain issue I’ve had is in missing the ‘connections’. You know… putting 2 and 2 together to make 4, kind of thing. Like the other day when it finally occurred to me that Matt could not be in the sun…just like me… because he was taking the same antibiotic I am. He’d been taking it for a week before I snapped on that. Never mind that the whole week I KNEW he and I were taking the same med, I KNEW that it was the med that I had to take with a lot of water and no dairy and also eat with or else get sick and so I KNEW that applied to Matt too and I KNEW it was the med that makes it where I burn real easy and yet I did not make *that* connection for a week.

Why didn’t I mention the inability to make connections in my little list above? Because of another big brain symptom/issue… memory problems. I forget EVERYTHING, and really quick, too. This includes what my symptoms are or have been in the last few hours, let alone the last few days, weeks, months, etc. (Of course keeping other people’s symptoms -like the kids- straight is even more difficult.) I won’t necessarily forget everything, but I certainly don’t remember it all, either. Some of what I can remember gets twisted and put into wrong places on the timeline, too.

So, yeah. That’s my non-functioning brain in a nutshell. And here I just thought I WAS nuts…

****updated about 10min later****

Oh yeah… here is another brain issue… confusion. On all levels, about whatever you can imagine. I guess reading comprehension and auditory processing difficulties would also fall under the ‘brain’ heading, too, huh?

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