How does one measure progress during the treatment of Lyme Disease and associated tick-borne illnesses?
Good question, but not easy to answer.
What I mean is, it’s not an easy thing to do because progress can be so subtle, to the point where you don’t even realize you’ve made progress until you really sit down and think about how you felt 6 months ago compared to how you feel today. At least, that’s my experience.
For me, it’s a lot easier to quantify my progress when it comes to the obviously physical manifestations of the disease(s), such as pain, dizziness, nausea, ability to tolerate and integrate external sensory stimuli, ability to drive, ability to go out into the world by myself without fear of falling down or becoming too confused/overwhelmed/SICK to negotiate my way solo.
I can definitively say that, since beginning treatment over a year ago, my pain has lessened, as has the nausea, dizziness, and even my cognitive symptoms. I still can’t drive, but I have less trouble expressing myself orally, less trouble with verbal comprehension, less trouble simply thinking. That’s not to say these problems have vanished, but they have lessened in severity and duration.
I find what is most difficult for me to gauge is the progress with symptoms that manifest psychiatrically. I can ask myself, “How do I feel today?” The answer may be: I FEEL HORRIBLE; my anxiety is through the roof, I have no motivation, and I wouldn’t mind going to sleep and never waking up.
I think “horrible” is a pretty apt descriptor for such a state of mind/feeling. But if I step back and consider the anxiety I experience now as compared to the anxiety I experienced, say, 6 or so months ago, there’s no comparison. Six or 8 months ago, it was all-consuming. I dealt with severe anxiety practically every moment of every day. A lot of the nausea I felt was undoubtedly due, in part, to the intense anxiety I experienced. So, while I may say that today I feel “horrible,” I mean it, but today’s “horrible” was last year’s status quo, which definitely signifies progress.
As for feeling as though I wouldn’t mind going to sleep and never waking up, well, I don’t truly mean it -- though there was a time when I did. When this thought pops up now, I recognize it for what it is: exhaustion, frustration, and usually a result of die-off. And so I acknowledge it, but don’t let it push me toward acting out with self-destructive behavior.
Sometimes I feel as though I’ve lost some of the progress I’d thought I made, which is upsetting, but all part of the process of healing. I have trouble remembering that the path to health is not a straight line, but an upward spiral; each revolution uncovers a new layer of health. Though the improvements may be subtle, they do exist. The key in maintaining a good perspective is in remembering that they do indeed exist.
Saturday, November 20, 2010
Saturday, October 16, 2010
I am not Alice falling down the rabbit hole; I am the rabbit hole.
Today, I feel closer to the person I am than I’ve felt in a long time. I’m always surprised when confronted with evidence of myself. Surprised to realize I’m still here, have been here all along, beneath layers of die-off, brain infection, exhaustion, confusion . . . .
It’s so easy to lose myself amidst the appurtenances of illness. Fear clouds everything, fills me up till I can’t fathom life on solid ground.
I can only speak from the point of view of someone dealing with Lyme Disease & co-infections; I don’t know what day-to-day life is like for people dealing with other chronic illnesses. So, for me, the hardest part of dealing with illness is the loss of self that accompanies it. Psychologically speaking, the first several months of treatment weren’t so bad because I had just finished my grad program and could still remember what it felt like to be part of the human race. My achievements were still fresh in my mind, and I was proud of myself. On good days, I went out and saw Broadway and off-Broadway shows, often by myself. And I really enjoyed the time spent walking around the city alone. But as the months passed and I became sicker, a sense of isolation began to sink in. I could no longer trust my body to get me to and from the city by myself, so I didn’t go out much. Severe anxiety kept me huddled in bed most days. My life of the previous two years became a distant memory.
It’s been over a year since I started treatment, and in that time I seem to have lost myself. No, not entirely, because I do have days like today, however infrequent, that remind me I’m still here. But most of the time, I feel so foreign, and I think that’s where Lyme & co., in particular, come in. Depersonalization and derealization are both symptoms of Lyme Disease, and they’ve been part of my life for a very long time, worsening in response to die-off reactions from treatment. In and of themselves, these symptoms cause the very sense of losing oneself (and one’s mind) with which I continually struggle. Add to the equation isolation from the world/ loss of context of my place in the world, and the feeling I have of losing myself makes perfect sense.
That’s why days like today are so important for me to hold onto. They give me the faith I need to keep fighting, because there really is something worth fighting for: me.
It’s so easy to lose myself amidst the appurtenances of illness. Fear clouds everything, fills me up till I can’t fathom life on solid ground.
I can only speak from the point of view of someone dealing with Lyme Disease & co-infections; I don’t know what day-to-day life is like for people dealing with other chronic illnesses. So, for me, the hardest part of dealing with illness is the loss of self that accompanies it. Psychologically speaking, the first several months of treatment weren’t so bad because I had just finished my grad program and could still remember what it felt like to be part of the human race. My achievements were still fresh in my mind, and I was proud of myself. On good days, I went out and saw Broadway and off-Broadway shows, often by myself. And I really enjoyed the time spent walking around the city alone. But as the months passed and I became sicker, a sense of isolation began to sink in. I could no longer trust my body to get me to and from the city by myself, so I didn’t go out much. Severe anxiety kept me huddled in bed most days. My life of the previous two years became a distant memory.
It’s been over a year since I started treatment, and in that time I seem to have lost myself. No, not entirely, because I do have days like today, however infrequent, that remind me I’m still here. But most of the time, I feel so foreign, and I think that’s where Lyme & co., in particular, come in. Depersonalization and derealization are both symptoms of Lyme Disease, and they’ve been part of my life for a very long time, worsening in response to die-off reactions from treatment. In and of themselves, these symptoms cause the very sense of losing oneself (and one’s mind) with which I continually struggle. Add to the equation isolation from the world/ loss of context of my place in the world, and the feeling I have of losing myself makes perfect sense.
That’s why days like today are so important for me to hold onto. They give me the faith I need to keep fighting, because there really is something worth fighting for: me.
Tuesday, September 28, 2010
Famous Last Words/ My Rifampin Die-Off Reaction
I spoke too soon: yesterday, Rifampin kicked my ass.
It's hard for me to describe the experience of a die-off reaction, but I'll try.
Sometimes it feels like the flu, with aches and pains and a feverish feeling (usually because I have a fever).
Sometimes, like yesterday, it feels like . . . I'm toxic: My body is a vat of biohazardous waste. And I can't drink enough water or choke down enough chlorella to remove the toxins fast enough.
The feeling of toxicity is accurate. According to this page, "The Herxheimer Reaction is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough. Simply stated, it is a reaction that occurs when the body is detoxifying and the released toxins either exacerbate the symptoms being treated or create their own symptoms."
Not everyone experiences a die-off reaction, but some people experience very harsh die-off reactions that can be dangerous, especially if there is impairment to the organs/organ systems responsible for the elimination of toxins: the liver, the lymphatic system, the kidneys, the colon.
I seem to fall somewhere in the middle; my die-off reactions don't last for weeks at a time, and have never, to my knowledge, been dangerous. When I feel especially toxic, I drink a ton of water, lemon water, detox teas, and apple cider vinegar (ACV). I take ACV and epsom salt baths. I eat handfulls of chlorella and other binders, like activated charcoal. One of the ways I can tell my body is overloaded with toxins is an increase in my chemical sensitivities. For example, I can be in my bedroom with the door closed and detect that my mother, behind the closed door of her bedroom, has sprayed a drop of perfume on her wrist. And that drop of perfume makes me hide my head under the covers so I can breathe more easily. It's incidents like that which make me realize I've been slacking in keeping up with regular detoxification.
For times when I'm very chemically sensitive but have to be out in public or around people who wear synthetic fragrances, I have a mask. It's not exactly fashionable, but it works. I carry it everywhere with me, just in case.
It's hard for me to describe the experience of a die-off reaction, but I'll try.
Sometimes it feels like the flu, with aches and pains and a feverish feeling (usually because I have a fever).
Sometimes, like yesterday, it feels like . . . I'm toxic: My body is a vat of biohazardous waste. And I can't drink enough water or choke down enough chlorella to remove the toxins fast enough.
The feeling of toxicity is accurate. According to this page, "The Herxheimer Reaction is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough. Simply stated, it is a reaction that occurs when the body is detoxifying and the released toxins either exacerbate the symptoms being treated or create their own symptoms."
Not everyone experiences a die-off reaction, but some people experience very harsh die-off reactions that can be dangerous, especially if there is impairment to the organs/organ systems responsible for the elimination of toxins: the liver, the lymphatic system, the kidneys, the colon.
I seem to fall somewhere in the middle; my die-off reactions don't last for weeks at a time, and have never, to my knowledge, been dangerous. When I feel especially toxic, I drink a ton of water, lemon water, detox teas, and apple cider vinegar (ACV). I take ACV and epsom salt baths. I eat handfulls of chlorella and other binders, like activated charcoal. One of the ways I can tell my body is overloaded with toxins is an increase in my chemical sensitivities. For example, I can be in my bedroom with the door closed and detect that my mother, behind the closed door of her bedroom, has sprayed a drop of perfume on her wrist. And that drop of perfume makes me hide my head under the covers so I can breathe more easily. It's incidents like that which make me realize I've been slacking in keeping up with regular detoxification.
For times when I'm very chemically sensitive but have to be out in public or around people who wear synthetic fragrances, I have a mask. It's not exactly fashionable, but it works. I carry it everywhere with me, just in case.
Sunday, September 26, 2010
The Bartonella Roller Coaster and General Ramblings
Treating Bartonella is a roller coaster ride, to say the least. So far, I've noticed subtle changes that indicate meds are working, so that's heartening. But, WHOA, serious roller coaster ride. In addition to the pain and discomfort typical of die-off reactions, I'm experiencing psychiatric die-off symptoms, including mood lability, periods of increased anxiety and depression, hypersensitivity, weepiness, rage, dissociation . . . the list goes on. Essentially, I'm Dr. Jekyll one minute, Mr. Hyde the next, repeat ad nauseam.
The symptoms aren't by any means new to me; I've dealt with them for most of my life. But I'm not used to experiencing them all at once and with such intensity. It changes from day to day and hour to hour, but a general pattern of anxiety and agitation in the evening has emerged. It's very . . . uncomfortable. But I'm finding that, as long as I ride it out, as opposed to getting stuck on how much I don't want to feel this way (!!!!!), it passes a lot more quickly and I feel a lot more sane.
I'm on consecutive day 8 of IV Zithromax, which won't be the norm, as I'm supposed to infuse 4 days of Zithromax, then 3 days of Rifampin, then back to Zithromax, etc. But the schedule got screwed up since I started with Rifampin the first day, then Zith the second day, then back to Rifampin -- or something like that -- so I'll start my normal schedule tomorrow. I've been told that Rifampin is harsh and difficult to tolerate, but I didn't feel much in the way of a die-off reaction the 2 days I've taken it so far, whereas I had an almost immediate die-off reaction from Zith. Maybe this means I tolerate it well? Or it may not have built up enough in my system to cause a major reaction? Or both?
I'm relieved that tomorrow's a Rifampin day because Zith makes me feel so foggy and out of it. But what I don't like about Rifampin is that I have to take it twice a day, 12 hours apart, and prepare each day's doses in the morning. First of all, I don't typically get up in the "morning," so I'm going to have to set my alarm to wake me at a decent hour, lest I want to infuse my second dose at 2am. What I do like about Rifampin is that it only takes about 30 minutes to infuse, as opposed to the 90 or so minutes it takes to infuse Zith. True, I'm using an infusion ball and not an IV bag, so I don't have to rely on gravity, nor do I have to remain in one place for the duration of the infusion, but I find my line gets caught on just about everything when I'm active during an infusion, so I tend to stay in one place.
You know what freaks me out about having a PICC line? AIR BUBBLES. Apparently, "microbubbles" are normal and won't hurt me, but they scare the hell out of me. Yesterday, mid-infusion, I got scared because the little bubbles seemed to be grouping together to form larger bubbles, so I unscrewed my line and called the nurse whose cell # I have for any questions or concerns. She calmed me down (this was not the first time she's had to calm me down over the phone) and told me that, though they wouldn't hurt me, I could get rid of the bubbles by pulling them out with a saline syringe, and then just reattach to my Zith line and finish the infusion. So, I screwed on the saline syringe, pulled out the bubbles (and some blood, too) to my satisfaction, and resumed my infusion. After that little freak out, I was totally spent so I pretty much curled into the fetal position to minister to my anxieties, and eventually passed out for a couple of hours. I hope today's infusion is less eventful.
I'll end it here because all I'm doing right now is rambling, and that's best left for my paper journal. I think some SuDoku is in order.
The symptoms aren't by any means new to me; I've dealt with them for most of my life. But I'm not used to experiencing them all at once and with such intensity. It changes from day to day and hour to hour, but a general pattern of anxiety and agitation in the evening has emerged. It's very . . . uncomfortable. But I'm finding that, as long as I ride it out, as opposed to getting stuck on how much I don't want to feel this way (!!!!!), it passes a lot more quickly and I feel a lot more sane.
I'm on consecutive day 8 of IV Zithromax, which won't be the norm, as I'm supposed to infuse 4 days of Zithromax, then 3 days of Rifampin, then back to Zithromax, etc. But the schedule got screwed up since I started with Rifampin the first day, then Zith the second day, then back to Rifampin -- or something like that -- so I'll start my normal schedule tomorrow. I've been told that Rifampin is harsh and difficult to tolerate, but I didn't feel much in the way of a die-off reaction the 2 days I've taken it so far, whereas I had an almost immediate die-off reaction from Zith. Maybe this means I tolerate it well? Or it may not have built up enough in my system to cause a major reaction? Or both?
I'm relieved that tomorrow's a Rifampin day because Zith makes me feel so foggy and out of it. But what I don't like about Rifampin is that I have to take it twice a day, 12 hours apart, and prepare each day's doses in the morning. First of all, I don't typically get up in the "morning," so I'm going to have to set my alarm to wake me at a decent hour, lest I want to infuse my second dose at 2am. What I do like about Rifampin is that it only takes about 30 minutes to infuse, as opposed to the 90 or so minutes it takes to infuse Zith. True, I'm using an infusion ball and not an IV bag, so I don't have to rely on gravity, nor do I have to remain in one place for the duration of the infusion, but I find my line gets caught on just about everything when I'm active during an infusion, so I tend to stay in one place.
You know what freaks me out about having a PICC line? AIR BUBBLES. Apparently, "microbubbles" are normal and won't hurt me, but they scare the hell out of me. Yesterday, mid-infusion, I got scared because the little bubbles seemed to be grouping together to form larger bubbles, so I unscrewed my line and called the nurse whose cell # I have for any questions or concerns. She calmed me down (this was not the first time she's had to calm me down over the phone) and told me that, though they wouldn't hurt me, I could get rid of the bubbles by pulling them out with a saline syringe, and then just reattach to my Zith line and finish the infusion. So, I screwed on the saline syringe, pulled out the bubbles (and some blood, too) to my satisfaction, and resumed my infusion. After that little freak out, I was totally spent so I pretty much curled into the fetal position to minister to my anxieties, and eventually passed out for a couple of hours. I hope today's infusion is less eventful.
I'll end it here because all I'm doing right now is rambling, and that's best left for my paper journal. I think some SuDoku is in order.
Tuesday, September 21, 2010
Sweetness by Stephen Dunn
Just when it has seemed I couldn’t bear
one more friend
waking with a tumor, one more maniac
with a perfect reason, often a sweetness
has come
and changed nothing in the world
except the way I stumbled through it,
for a while lost
in the ignorance of loving
someone or something, the world shrunk
to mouth-size,
hand-size, and never seeming small.
I acknowledge there is no sweetness
that doesn’t leave a stain,
no sweetness that’s ever sufficiently sweet ....
Tonight a friend called to say his lover
was killed in a car
he was driving. His voice was low
and guttural, he repeated what he needed
to repeat, and I repeated
the one or two words we have for such grief
until we were speaking only in tones.
Often a sweetness comes
as if on loan, stays just long enough
to make sense of what it means to be alive,
then returns to its dark
source. As for me, I don’t care
where it’s been, or what bitter road
it’s traveled
to come so far, to taste so good
______________________________
A good friend of mine posted this poem to Facebook today and, since it's a poem I love, I decided to share it here. If you're in the mood to read some good poetry, check out Words Like Oxygen, the blog where I post my favorite poems.
one more friend
waking with a tumor, one more maniac
with a perfect reason, often a sweetness
has come
and changed nothing in the world
except the way I stumbled through it,
for a while lost
in the ignorance of loving
someone or something, the world shrunk
to mouth-size,
hand-size, and never seeming small.
I acknowledge there is no sweetness
that doesn’t leave a stain,
no sweetness that’s ever sufficiently sweet ....
Tonight a friend called to say his lover
was killed in a car
he was driving. His voice was low
and guttural, he repeated what he needed
to repeat, and I repeated
the one or two words we have for such grief
until we were speaking only in tones.
Often a sweetness comes
as if on loan, stays just long enough
to make sense of what it means to be alive,
then returns to its dark
source. As for me, I don’t care
where it’s been, or what bitter road
it’s traveled
to come so far, to taste so good
______________________________
A good friend of mine posted this poem to Facebook today and, since it's a poem I love, I decided to share it here. If you're in the mood to read some good poetry, check out Words Like Oxygen, the blog where I post my favorite poems.
Friday, September 17, 2010
I've got my PICC line and all is well.
I'm exhausted, so this won't be as coherent as I'd like, but I'll do my best.
The insertion yesterday was painless, though really bloody, but in an awesome way. Then again, I love horror movies and gore, so to someone else the experience might be really harrowing.
My mom and two of my sisters came and watched the insertion. One of my sisters had to leave the room at some point because when it was over and the woman was cleaning the blood off of me, there were huge clots of it hanging off my arm. It looked like pieces of liver. AWESOME. My sister was only out of the room briefly though, and had taken a bunch of pictures of the procedure, at my request. I haven't seen them yet, but depending on how nasty they are, I may post them.
I had expected to get the line in my left (non-dominant) arm, but got it in my right instead. Supposedly there are less problems in the right arm. I'd also expected it to be above my elbow, but it's more like in the crook of it because that's where the vein was juciest. Having it in my right arm is kind of a pain in the butt, but I expect I'll get used to it pretty quickly.
After the insertion, I got my first infusion of Rifampin. It went well. No die-off reaction yet. Today I went back to the doctor's office to get my dressing changed -- they put on a pressure dressing for the first 24 hours. Then I got my first infusion of Zithromax. Since it takes about 90 minutes, I started it at the office and then went home after they saw I wasn't having a bad reaction to it. Since I've been on oral Zithromax in the past, they didn't insist on keeping me for the whole infusion.
Once I'm done infusing, I have to flush my line with saline, which is so weird because I can actually taste it. Then I flush with Heparin to make sure there's no clotting happening. And that's it.
I had wanted to write a much more detailed entry about this whole experience, but my brain is too mushy for that today. In fact, if this entry makes much sense at all, I'll consider it a success.
The insertion yesterday was painless, though really bloody, but in an awesome way. Then again, I love horror movies and gore, so to someone else the experience might be really harrowing.
My mom and two of my sisters came and watched the insertion. One of my sisters had to leave the room at some point because when it was over and the woman was cleaning the blood off of me, there were huge clots of it hanging off my arm. It looked like pieces of liver. AWESOME. My sister was only out of the room briefly though, and had taken a bunch of pictures of the procedure, at my request. I haven't seen them yet, but depending on how nasty they are, I may post them.
I had expected to get the line in my left (non-dominant) arm, but got it in my right instead. Supposedly there are less problems in the right arm. I'd also expected it to be above my elbow, but it's more like in the crook of it because that's where the vein was juciest. Having it in my right arm is kind of a pain in the butt, but I expect I'll get used to it pretty quickly.
After the insertion, I got my first infusion of Rifampin. It went well. No die-off reaction yet. Today I went back to the doctor's office to get my dressing changed -- they put on a pressure dressing for the first 24 hours. Then I got my first infusion of Zithromax. Since it takes about 90 minutes, I started it at the office and then went home after they saw I wasn't having a bad reaction to it. Since I've been on oral Zithromax in the past, they didn't insist on keeping me for the whole infusion.
Once I'm done infusing, I have to flush my line with saline, which is so weird because I can actually taste it. Then I flush with Heparin to make sure there's no clotting happening. And that's it.
I had wanted to write a much more detailed entry about this whole experience, but my brain is too mushy for that today. In fact, if this entry makes much sense at all, I'll consider it a success.
Thursday, September 16, 2010
I am nothing if not consistently inconsistent.
Again, it has been too long since my last post. Oh well. I have been writing more lately, but only for a very select audience. My train of thought (when I have a somewhat cohesive one) tends to meander, and may not necessarily have a clear point, so I choose not to share it with the Public. Instead, I write in my paper journal or in my private online journal. However, today I have something to say:
I AM FINALLY GETTING MY PICC LINE!
Sure, it only took a year and two months to finally get it sorted out and scheduled (!!!!), but the day is here. In fact, my doctor appointment is in less than three hours -- so I really should get up sooner than later, but first I want to put into words how I feel about this whole thing.
How do I feel about it?
Well, yesterday, a friend asked me if I was excited about finally getting my line. I said, no, I don't think "excited" is the right word. If I look at the big picture, then yes, I'm more excited than not about the prospect of receiving effective treatment that will allow me to experience a sense of normalcy. I will eventually be able to work and to go back to school. I'll be able to make plans without having to cancel at the last minute. But, right now, I'm not thinking big-picture; I'm thinking, "Oh my god, they're going to thread a line up a vein in my arm and down into my chest, and then they're going to infuse that line with potent antibiotics that will make me sick, and then I'm going to be miserable...." That line of thought can go on for quite some time, spiraling into even more catastrophic thinking if I let it, but I rarely do. Something else I try not to think about is the fact that I will have to clear my line with heparin every single day, so as to avoid a blood clot. Oh, and I also try not to think about the potential for sepsis.
::sigh::
I am feeling optimistic about the effectiveness of this treatment though. Yes, it will make me miserable at first, but what we're treating (Bartonellosis, a common co-infection) is the source of so many of my most awful symptoms. So, once I go through this treatment, my quality of life should vastly improve.
I'll leave you with a picture of my left arm, pre-line. In several hours, I will have a dressing wrapped around my arm, above my elbow, covering the site of the line, keeping it sterile. I'll have to figure out how to wrap it up so I can shower, because I can't get it wet. Luckily, I have an amazing community of friends with Lyme Disease who have already gone through this and have given me pointers on what works and what doesn't work re: showering/covering the line.
Now, I'm off to shower, dress, and head to my doctor's office. Wish me luck!
I AM FINALLY GETTING MY PICC LINE!
Sure, it only took a year and two months to finally get it sorted out and scheduled (!!!!), but the day is here. In fact, my doctor appointment is in less than three hours -- so I really should get up sooner than later, but first I want to put into words how I feel about this whole thing.
How do I feel about it?
Well, yesterday, a friend asked me if I was excited about finally getting my line. I said, no, I don't think "excited" is the right word. If I look at the big picture, then yes, I'm more excited than not about the prospect of receiving effective treatment that will allow me to experience a sense of normalcy. I will eventually be able to work and to go back to school. I'll be able to make plans without having to cancel at the last minute. But, right now, I'm not thinking big-picture; I'm thinking, "Oh my god, they're going to thread a line up a vein in my arm and down into my chest, and then they're going to infuse that line with potent antibiotics that will make me sick, and then I'm going to be miserable...." That line of thought can go on for quite some time, spiraling into even more catastrophic thinking if I let it, but I rarely do. Something else I try not to think about is the fact that I will have to clear my line with heparin every single day, so as to avoid a blood clot. Oh, and I also try not to think about the potential for sepsis.
::sigh::
I am feeling optimistic about the effectiveness of this treatment though. Yes, it will make me miserable at first, but what we're treating (Bartonellosis, a common co-infection) is the source of so many of my most awful symptoms. So, once I go through this treatment, my quality of life should vastly improve.
I'll leave you with a picture of my left arm, pre-line. In several hours, I will have a dressing wrapped around my arm, above my elbow, covering the site of the line, keeping it sterile. I'll have to figure out how to wrap it up so I can shower, because I can't get it wet. Luckily, I have an amazing community of friends with Lyme Disease who have already gone through this and have given me pointers on what works and what doesn't work re: showering/covering the line.
Now, I'm off to shower, dress, and head to my doctor's office. Wish me luck!
Wednesday, June 9, 2010
It's been a while.
It's been many months since I last posted to this blog. There are a few reasons for my absence. Firstly, my cognitive symptoms worsened and stayed that way for a while, so writing coherently was difficult. It felt more like pulling teeth than anything else, and if I couldn't enjoy it, what was the point?
Then there's the whole "getting a hell of a lot worse before you get better" deal that comes with Lyme Disease and treatment. For a long time, I just wasn't feeling like myself. In fact, it's only very recently that I've started to feel like my body and mind are in synch even part of the time. For more days than I can count, I felt like I was standing outside myself, watching my life go by. I didn't feel real. Unfortunately, this is not uncommon; it is a symptom of Lyme Disease and co-infections called depersonalization. There's also the feeling of the world outside oneself being unreal. That's called derealization. I experienced a lot of both. And, on top of that, or perhaps as a result of it, I spent a lot of time feeling as though I was losing my mind -- again, not an uncommon symptom of the disease.
It's only this past week or so that I've felt vaguely human and (dare I say it?) more like myself. It may last, it may not last, but I'll take what I can get. Essentially, I've found myself more motivated to get out and SOCIALIZE! This is HUGE for me. Lack of motivation (another common symptom) has been a major problem. I guess it makes sense considering so many of my Lyme symptoms are psychiatric in nature. So the fact that I want to get out of bed when I wake up, jump in the shower, and leave the house is a markedly notable improvement. That coupled with a recent increase in energy/endurance, have made it so that I feel more like a member of the human race. And it feels fantastic.
In 2 weeks, I'm finished with the course of IM Bicillin (intramuscular injections of penicillin) that started 14 weeks ago. The next step is to have a PICC (peripherally-inserted central catheter) line inserted and start IV antibiotics. I'm both excited and frightened at the thought of this. I'm don't love the idea of threading a line into my superior vena cava and infusing myself with high doses of IV antibiotics, but I DO like the idea of continuing to feel better.
So, onward I go.
Then there's the whole "getting a hell of a lot worse before you get better" deal that comes with Lyme Disease and treatment. For a long time, I just wasn't feeling like myself. In fact, it's only very recently that I've started to feel like my body and mind are in synch even part of the time. For more days than I can count, I felt like I was standing outside myself, watching my life go by. I didn't feel real. Unfortunately, this is not uncommon; it is a symptom of Lyme Disease and co-infections called depersonalization. There's also the feeling of the world outside oneself being unreal. That's called derealization. I experienced a lot of both. And, on top of that, or perhaps as a result of it, I spent a lot of time feeling as though I was losing my mind -- again, not an uncommon symptom of the disease.
It's only this past week or so that I've felt vaguely human and (dare I say it?) more like myself. It may last, it may not last, but I'll take what I can get. Essentially, I've found myself more motivated to get out and SOCIALIZE! This is HUGE for me. Lack of motivation (another common symptom) has been a major problem. I guess it makes sense considering so many of my Lyme symptoms are psychiatric in nature. So the fact that I want to get out of bed when I wake up, jump in the shower, and leave the house is a markedly notable improvement. That coupled with a recent increase in energy/endurance, have made it so that I feel more like a member of the human race. And it feels fantastic.
In 2 weeks, I'm finished with the course of IM Bicillin (intramuscular injections of penicillin) that started 14 weeks ago. The next step is to have a PICC (peripherally-inserted central catheter) line inserted and start IV antibiotics. I'm both excited and frightened at the thought of this. I'm don't love the idea of threading a line into my superior vena cava and infusing myself with high doses of IV antibiotics, but I DO like the idea of continuing to feel better.
So, onward I go.
Sunday, December 13, 2009
Invictus by William Ernest Henley
Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.
Friday, December 11, 2009
Learning from Lyme
It's strange how the daily struggles of living with this disease can shift so subtly. Last month I was dealing with hardcore psychiatric symptoms -- which means there was probably die-off of the infection in my brain -- and struggling to make it through each hour. These days, I'm struggling less with simply existing and I'm thinking about the future. Sometimes thinking about the future is exciting, but sometimes it gets me down because I become acutely aware of the distance between where my functioning and health are currently, and where they'll have to be in order for me to achieve my vision of the future. That's where letting go comes in.
If becoming ill with Lyme Disease has taught me anything, it's that control is an illusion. Like Death Cab for Cutie sings in their song "What Sarah Said": "...every plan is a tiny prayer to father time."
When we're generally healthy, we make plans as a matter of fact. We assume that, unless something cataclysmic happens, we will get to the X on our map of The Future. We assume that there is a Future, and then if things don't go as planned, we mourn what we believe could have/should have been. We forget that our grand plans for the Future are only ideas and never were they actual realities. We mourn the loss of what we thought was rightly ours, though it never was.
I've mourned a lot. I could keep mourning the loss of what I thought was mine for the taking, but I've found my time and energy are better spent accepting what I know to be true: we can tentatively plan for the future and hope that when we get there it somewhat resembles the life we'd envisioned; however, becoming too attached and identified with our plans is counterproductive to leading a fulfilling life for a couple of reasons. Firstly, by becoming attached to and identified with who & what we want to be, and what we want to achieve, we lose focus on what we have now and who we already are (which I believe is essential and unchanging). Secondly, by letting go and focusing our energies on the present, we may find that where we end up is exactly where we want to be -- only we didn't know that 2 years ago when we had our sights set on some pie-in-the-sky idea. Essentially, I believe that by letting go, focusing on the present, and not worrying too much about the future, I will experience less suffering because I will not have lost anything, as I was not holding onto anything. And I will be living a life more in line with my current values. Also, by letting go of that over which I have no control, I'm free to focus my energy on the things I can control, like how I react to the events in my life.
So, that's where I'm at. It's a struggle, for sure. I routinely find myself worrying about the future, and routinely must remind myself that the future will take care of itself as long as I take care of the present. I am by no means adept at this, but it's a start. And it's something that living with Lyme Disease has taught me.
If becoming ill with Lyme Disease has taught me anything, it's that control is an illusion. Like Death Cab for Cutie sings in their song "What Sarah Said": "...every plan is a tiny prayer to father time."
When we're generally healthy, we make plans as a matter of fact. We assume that, unless something cataclysmic happens, we will get to the X on our map of The Future. We assume that there is a Future, and then if things don't go as planned, we mourn what we believe could have/should have been. We forget that our grand plans for the Future are only ideas and never were they actual realities. We mourn the loss of what we thought was rightly ours, though it never was.
I've mourned a lot. I could keep mourning the loss of what I thought was mine for the taking, but I've found my time and energy are better spent accepting what I know to be true: we can tentatively plan for the future and hope that when we get there it somewhat resembles the life we'd envisioned; however, becoming too attached and identified with our plans is counterproductive to leading a fulfilling life for a couple of reasons. Firstly, by becoming attached to and identified with who & what we want to be, and what we want to achieve, we lose focus on what we have now and who we already are (which I believe is essential and unchanging). Secondly, by letting go and focusing our energies on the present, we may find that where we end up is exactly where we want to be -- only we didn't know that 2 years ago when we had our sights set on some pie-in-the-sky idea. Essentially, I believe that by letting go, focusing on the present, and not worrying too much about the future, I will experience less suffering because I will not have lost anything, as I was not holding onto anything. And I will be living a life more in line with my current values. Also, by letting go of that over which I have no control, I'm free to focus my energy on the things I can control, like how I react to the events in my life.
So, that's where I'm at. It's a struggle, for sure. I routinely find myself worrying about the future, and routinely must remind myself that the future will take care of itself as long as I take care of the present. I am by no means adept at this, but it's a start. And it's something that living with Lyme Disease has taught me.
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