[I'm terribly sorry for the O GOD MY LIFE, but I promised myself I would record everything I could about my disease, and this is a legitimate part of it that I'm sure others can relate to...and since I've been told that my blog actually helped a couple of people (one person used it for school work and got an "A" when talking about Lyme in dogs compared to humans...sorry, that's just cool), I'm making the time to record not only the physical, but emotional and mental things that I'm going through right now.]
I swear, there’s got to be some spiteful, sentient thing controlling my uterus (“parasitic twin” has been mentioned by more than one person…womp, womp). I mean, it managed to hide its condition for YEARS, giving me generic symptoms of endometriosis while slowly but surely killing any chance of being a properly functioning organ, while also attempting to destroy my bowel. Then, when it was discovered, it started just yelling, “BANZAAIII!” and nuking me from orbit every month (the months since the last surgery haven’t been pleasant…the only thing keeping me from going nuts is the knowledge that I have a couple of months left of discomfort [from healing after surgery], specifically from my uterine area, and then it’s over, except for hormone adjustments).
I had my period a couple of weeks ago, had about a week of reprieve, then it started up again the same day my mom and eldest sister came into town on their way back from vacation (Thursday). It’s been…special. It’s finally slowing down, again (for a “half-period,” it was very…robust), so I won’t have to be like, “Watch out when you start cutting sections to remove!” to the surgeon, but I lost a couple of days to cramps when I could have been doing laundry (washing or folding), running errands, or cleaning up in preparation for sitting on my ass.
I have a lot to do, and I’m getting stressed because I have less time to do it.
This isn’t even a “left it to the last minute” thing, either – it’s literally been an, “oh, you need to get this done? TOO BAD!” on the part of my body…because when I think about it, and I get even a little stressed, my immune system turns on the warning siren and things start to just shut down or go wonky.
I haven’t slept more than 4 hours per night since about a week ago. That’s part of the reason my stress is compounding, right now.
It’s irritating, is what I’m saying.
I talked to a friend who’s had Lyme (diagnosed) since around 2001-2002. He was at a point where he couldn’t walk, and they mis-diagnosed him as terminal (ALS) before catching his Lyme and beginning treatment (that “terminal” diagnosis really screws up your future, too, even if they rescind it officially, because it’s on your record, regardless – that’s why accurate diagnostic methods have to be implemented ASAP). He’s now able to do things around the house and yard, but they nearly killed him trying to get rid of two tick-borne diseases at once. Basically, he’s a good guy for me to gauge whether or not how I’m reacting to meds is unusual, because he’s been on freakin’ everything.
I got reassurance that what’s going on with me is “normal” – meaning that it definitely happens to people being treated, even if it doesn’t happen to everyone being treated.
“Reassurance” is great. I mean, it tells me that I don’t really need to change anything at the moment. The problem comes when I’m not thinking like that, and I’m just experiencing the side effects.
Sometimes with the side effects I can’t even think. I can’t say, “This is the road to better things.” I can’t imagine the future beyond the next med time. Pain, fatigue, worry, nausea…they gang up on me and just take over, and I feel like this monstrous host to some evil thing. And while that’s true, obviously I’M still “here” – I wouldn’t be complaining, otherwise. And I’m not giving up, even though I’m officially permanently disabled (I’ve got the handicapped placard and everything!), by means of nerve damage in my legs.
I’m just so frustrated. It’s only been 5 months (going on 6 in November), and it just seems like every time I think of something I need to do…even if it’s low-stress…I spike a fever, throw up, or my joints try to abandon ship. I have at least one more year of this (depending on whether I can take my antibiotics during the first month of recovery). I know it could be so much worse, but not many people know how this feels, the “research” released isn’t helping perceptions, and so I just look like a whinger.
People get tired of hearing me talk about how I feel, so I don’t in general conversation, any more. I just do a general “not feeling well” explanation and then stop talking (like, literally, I’ve been in gaming calls, lately, and I will just sit there until there’s an opening for a generic dirty comment or I see something that needs to be pointed out to the streamer – it’s not that I talk about being sick ALL THE TIME, it’s just that I’ve forgotten how to talk to other people because I feel so awful, if that makes sense).
When I go into more detail, I can feel the awkwardness like a thick fog. I can see it in people’s faces. They look down, one corner of their mouth goes up, and they knit their eyebrows – it’s a universal, “I have no clue how to respond to this” look, and I’m tired of seeing it. I’m tired of hearing the generic, “Yeah…” and the trailing off when I’m asked for more details, and then I give them. I can even see it in typed conversation – the cadence of words changes, the word choice abruptly goes more formal, and sentences get shorter. If this is how people act after they ASK for details, what’s supposed to make me want to share anything at all without it being dragged out of me?
People generally find Lyme really interesting, but usually only as an organism, not a disease.
(I’m not trying to paint EVERYONE with the same brush…this just happens so often that the folks who listen and respond are like these bursts of fresh air that I don’t have the energy to seek out, right now.)
And this is why I need therapy. I wonder if my doctor has found anyone she recommends, yet, because I’m getting tired of waiting. I know if I had a dedicated person to talk to about this, I wouldn’t be as frustrated.