This is me trying to make a post. Day six on Rifampin

Ahhh I’m sorry, I really have been around (i.e., on the computer), but I’m only capable of throwing out whatever words are currently floating around in my brain. My symptom chart consists of one-word descriptions, you know, and a blog entry… Well. That takes more. But I figure I’ll just wing it.

Let’s see… This is day six on the Rifampin. Good news is, I’m herxing! The bad news is, well, I’m herxing. It’s not comfortable but at least I had an idea of what might happen. It’s made things easier, and of course there are always pills… I also decided to STAY ON my Zoloft for the off-chance that it might actually help. I’m not sure if it has. On my “bad” days I just alternate between exceptionally-stable to exceptionally-unstable. Aha.

The most profound thing has been that 30-60 minutes after my antibiotic dose, I can no longer walk. This is a bit different from my usual wheelchair-dependent state where I can at least walk a few feet and sit down on the couch, and use the chair to help me get back or whathaveyou. This is more along the lines of, I must wheel myself to the door of the restroom, and I’m afraid I may fall during the short “dash” inside, even while I’m holding on to things. (My transport chair may be small and maneuverable but it’s near-impossible to fit through that particular doorway; grr.) So I’m effectively wheelchair-bound for the twelve hours following antibiotic administration. Late at night my ability to stand for a couple of minutes at a time gradually returns.

Other things that happen after my dose are:

  • A few hours later, I get tremors and various types of uncontrolled neurological happenings: Sometimes the dystonia becomes worse, sometimes my muscles will twitch everywhere, sometimes even my Tourette’s starts to act up.
  • About six hours later, the head pain starts. It’s like a throbbing-brain sensation and my eyes are very much affected. A few nights I’ve gotten through it, the others required Lortab and ibuprofen.
  • Both of these things also happened on the Doxycycline, but at a much more extreme degree.

Need I say more about how glad I am that we took the “get the bart levels down first” route?

As to be expected, my moods have been more volatile. I’ve noticed when I wake up, I am very snappy and irritable and that.. is not like me at all. (Despite waking up feeling sick, I’m honestly not one of those people who wake up in a bad mood.) I’m dealing pretty well with those sorts of things, though! A couple of times I’ve suddenly told friends “I’ll talk later” to avoid yelling or snapping at them for no reason, but the fact that I’ve had enough awareness to do that, is great. :)

I haven’t gotten much depersonalization yet, but the derealization is getting more frequent and I.. wow, I hate that so much. It’s like you’re dreaming and you can’t wake up; you can’t understand why anyone is saying the things they are; you don’t understand why you’re doing any activity… Luckily, like the moods, it comes in “episodes” and I haven’t had a full day of it. (This is how the bart usually acts, anyway–relatively short “episodes” of altered mental status in comparison to just waking up and being in a daze all the time–so I guess it makes sense that the herxing is like that, as well.)

Other things that have happened are.. well, I really need to make it a point to say, again, that my legs are ridiculously more weak than my arms! That baffles me. I guess because I’m used to thinking of my weakness in M.E.-terms, which is more akin to someone who has Myasthenia Gravis: Whatever you use the most will be affected the most, and your actions are directly related to your muscle function. But with this, that doesn’t matter. Basically I’m just not used to having weakness that isn’t relative to something I’ve done. And while the majority of my leg weakness has previously been neurological, this weakness affects my muscles, as well. So it’s just something new to cope with… I think I’m doing fine with it, though. The first couple of days I went to get up to shuffle to the restroom and nearly went to the floor (ha!), but I’m pleased to announce I remember that my legs aren’t completely functional, now! (I can’t help but laugh; really, how do you forget something like that?) And if I recall, the weakness was a part of my last herxing, so, right.

That said–and coupled with the long break I took from the computer the week before–I’m able to type a lot more recently. :) Which is very “convenient” (i.e., a blessing), because I’ve obviously been spending more time online. Usually, I go sit on the couch for half an hour per day, collectively. I also make at least one trip to my mother’s room at the other side of the house. I’m adventurous like that, you know. For right now those things don’t happen, though I am able to wheel through the house a few times per day, if only to say hi to everyone, see my puppy, and “get some air.” I opened the front door today, and felt the outdoors, and it was nice. But because of the new fatigue and types of weakness, it’s more or less in my best interest to just stay in one spot and not move that often. Lest I anger the headache gods, or upset whatever semblance of normal my blood pressure has maintained.

Another thing I’ve felt recently: Sick. Not really “you have a neurological disease” sick, but “you have an infection and now your body is trying to kill it” sick. You know the feeling: Fever, feeling “clammy,” bouts of dizziness and motion sickness, joint pains and sore muscles, attacks of nausea. Just general sick. Nothing new, but for the sake of mentioning it…

Today I woke up mildly dehydrated, but–and here’s the kicker–NOT to the point of requiring immediate intervention! :) That’s a great thing. I’m in Lyme flare mode right now, so perhaps that’s why I woke up like that. My cognition is poor (but never underestimate the power of the ramble!), my neck is stiff and hurting,  I’m having palpitations (though because of the Lyme, the mild dehydration, or both, I’m unsure), my arms have been going intermittently numb, and yesterday I actually woke up with some more-difficult-than-normal arm weakness. The POTS symptoms are a little angry, but again, dehydration is not my friend.

Well then! Right now my vision is rather blurry so that’s probably my cue to end this entry. I think that about covers everything. :)

a rainbow at night

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One thought on “This is me trying to make a post. Day six on Rifampin

  1. <3 I am thinking of you, and "glad" you are herxing, if you know what I mean. But also sorry herxing is making you worse and making it harder to get around. I would write more but I am not sure it would make sense.

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