It wasn't until the last couple of spoonfuls of my soup this afternoon that I realized the strange position I had been eating in. I felt so weak that I had been completely hovered over the bowl... Sitting up straight and bringing the spoon all the way up to my mouth felt both too exhausting, and too risky that it may spill everywhere before reaching my mouth, since my hands were so shaky. Then I got up super slowly, and walked super slowly over to the kitchen to put my bowl in the dishwasher, because the act of standing up and beginning to walk brought a rush of light-headedness, tremors, vibrations, and my heart pounding out of my chest. Such awesome timing, too, as I had been feeling well enough to get a bunch of stuff done all morning (although I could have gotten away with doing nothing all morning today if I had needed to), and was minutes away from heading out the door to go teach, which I needed to do. Typical, Lyme... Typical.
A lot of times, Tyler comes home from a trip and will say "how have you been feeling?" Lately, my response has been "you know? Not too bad!" In the following days while he's home, he gets to deal with every episode during which I am not feeling too well, which has lead him to ask "why does it seem like you're worse when I'm home? You say you're feeling 'not too bad' while I'm gone and then I come home and it seems like you're worse." And then I realized, there are multiple reasons for this.
Firstly, Tyler does not make me worse- let's get that clear right off the bat. Tyler makes everything in my world better. One reason I may be worse, is because Lyme flares constantly. That's what I need the world to understand. I can be having a great minute, hour, day, couple of days, and then BAM- out of absolutely nowhere, I'm down for the count. Sometimes it lingers for a minute, hour, day, or couple of days. It. is. always. different.
Yes, I'm having more moments and days when I'm feeling much better than I was a few months ago. I am SO thankful for that, and so encouraged by that. But this cycle of telling him (and everyone else) I'm "feeling pretty well" and then clearly not feeling well at all is a giant reminder to myself, to Tyler, and to the world that Lyme is a freaking hot mess. A hot mess. It is so unpredictable and obnoxious and every other annoying word I could describe it with. I also think it's easy to over-do it when he's home, because we do use that time to get a lot of stuff done that I've been putting off. I probably do have more moments of feeling pretty well while he's gone, because I can get away with not doing anything when I need to. When we have two days to get a lot of stuff done before his next trip and we run a bunch of errands at one time, I do not do well. A lot of times I'm like "yeah! It's go-time! Let's go do this, then that, then that, then this..." And somewhere in the middle I become absolutely useless. I sit in the car while he runs into the store, then we get home and I crawl onto the couch while he prepares our meals. Ugh. Lyme is always the uninvited guest that shows up to the party, where everyone's heads turn and the band's music dies, and it just gets really weird... -_-
Secondly, I realized that it's not that I don't have flares while he's gone. It's that I judge how bad they are differently. When I'm alone, I can feel like crap and no one else has to know- no one, if I don't want them to. I can carry on my day, or not carry on my day, without it affecting anyone else, and without worrying about what anyone else will think. I can tremor and hover over my soup and not feel like I'm worrying or burdening someone, choose not to go to the grocery store because I'm the only one who will face the consequences, etc.
When he's home, I always hope to be able to rise to the occasion, to be able to keep up- to go grocery shopping, to actually prepare meals, to be active, to get things done that I've likely been putting off while he was away... And I've been falling short, almost every time, and it is so much more disappointing to have a flare when I'm with him than to have a flare when I'm by myself.
I've also realized that the moments that I feel really well, I am the freakin' energizer bunny- how I used to be the majority of the time- a go-getter, an over-achiever, obsessively clean and organized, on top of things, never stopping until I get everything checked off on my list of things to do, athletic... These moments started getting pulled away slowly over a couple years, and I think it's hard for some people to remember that that was the most "normal" me. I have finally recognized that when I have a list of things to do in front of me, and I don't feel like doing a single one of them, my body is begging me not to do a single one of them. I get worse when I overdo it.
So my answer to you is the same... How have I been feeling lately? Depends on how you define "lately." If you asked me at any moment other than "now," my answer would be different. Two hours ago I was awesome and now I don't have the energy or mental capacity to get up and do anything. Five minutes ago I was awful and now I feel like I want to run around the lake (feel like I want to, not like I'd be capable right now lol).
A couple weeks ago I had a gig at The Bitter End. I felt pretty solid all day and was really looking forward to it. A couple minutes before I was supposed to begin my set, I got the worst muscle cramps on the whole right side of my upper body- torso up to shoulder. When you're performing, the show must go on, right? No one's ever supposed to know if anything's going wrong in the performer's world- performance-related or not. And I guess I kind of feel like it's the same in real life sometimes. Thus the reason that when I'm alone I have a lot more "pretty good" moments, and when I'm not alone I feel the need to push through and put on a good show (note that in relation to my husband, I know 100% that I don't need to, that he will support me no matter what. It's just the way I am, and just my way of trying to pretend like Lyme doesn't affect every part of my life I guess).
To sum up this "dear diary" post (apologies), if you were to graph how I'm feeling every moment of every day, the trend is that overall I am doing better. I am. I think I just need people to realize how broad of an "overall" that is. If I tell you I've been doing better lately, that doesn't mean I'm "all better." That means I'm feeling encouraged by the graph, and I am. "Better" is comparative. It means showing overall improvement. Still a reason to be happy.
And if you're interested- I'll continue to be on this 3-month round of antibiotics until my next appointment at the end of January. Then we make a new game-plan.
Lately I can just feel my nervous system is on the fritz. I can feel when it's settled down, when it's flaring, and when it's about to flare. They're the strangest, most unpleasant feelings of external tremors, internal tremors, internal whole-body vibrations... So bizarre.
We'll keep pushing forward and hoping this overall trend continues!
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