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17 February 2011 @ 02:09 pm
Sheer Will  
Doctor: "From what you've said and what I've read in your chart, I honestly can't see how you've been able to function at *all.* I can only surmise that you've been functioning by sheer force of will for, well, your whole life."

The Lyme specialist says that, while I did definitely have Lyme in September/October/November, I'm clearly cured of the actual organism itself. However, the symptoms are lingering, which is common because most of the symptoms of Lyme are expressions of physical damage to your system that the Lyme caused. In some patients, these get better over time as the body heals the damage. Some patients, however, cannot heal the damage and suffer the symptoms their whole life. Others (those with fibermialgia(sp) get worse over time as the damage worsens on its own.

In any case, meds that fight off the organism are incapable of helping at this point since there's no organism to fight off. There aren't meds to help heal the damage, though there are meds that keep it from getting worse if you suffer from fibermialgia.

In my case, the doctor thinks that I'm young, the disease was caught early, and I should be able to recover. But, because I don't sleep well or often, I don't eat well or often, I am significantly stressed all the time, I have significant social anxiety and paranoia, and I have an abysmal self-image and hate myself, my body hasn't been able to heal. Also, he says that I've clearly been acting energetic despite getting ~3 hours of sleep a night (and poor sleep at that) by willpower alone, and that the Lyme seems to have drained my reserves entirely. By continuing to not sleep, I'm not allowing those reserves to replenish. Even though it won't help for a while, getting good sleep should help significantly in the long run.

He also says I should eliminate all factors which may not have been major when I was healthy but may be massively exacerbated by the Lyme so that I can recover from the Lyme. So, to me, this means getting new glasses (mine are smudged and scratched), sleeping ~eight hours a night, and eating dinner every night instead of only occasionally (for the record, I never miss lunch and rarely miss breakfast, just having trouble with dinner). Also, I need to think for a few days before sending any email at all (perhaps a week or two if the email will go to multiple people) so I stop saying stupid shit that causes me anxiety and self-loathing. I also need to stop both ranting about other people and ranting about myself, and to instead find out why I'm actually upset and *if* I'm actually upset. I need to stop the negative introspection, but also stop the negative things I've been doing that have been fueling the negative introspection.

Most of all, I need to stop reflecting perceived negativity. When I reflect emotion, I amplify it. I'm not the only person I know who does this, and when I do it to someone else who does it, the exponential escalation is *crazily* bad. That I reflect the world is one of the truths of me that is both negative and positive. I need to stop

Also, I may need to switch meds. These experimental meds are not helping my sleep issues, and they could be aggravating my behavioral problems. They do prevent the narcoleptic episodes, but there are other drugs that do that too. I'm just so scared of switching, and I'm frightened to death of the side effects of Ritalin which I've been told can include loss of creativity. Switching would also include necessitating medical leave from work for a month or two. Still, maybe it's worth it. Maybe another med can help me more.

On a side note, there are things I used to do that I do not do anymore, and haven't since start my meds. I stopped staring at sunsets. I stopped tutoring GED students. I stopped doing certain positive physical activities, like playing DDR, rock climbing, and doing general muscular exercises. I stopped meditating. I stopped talking to Wolf (aka conducting deep and personal introspection) entirely. I stopped smiling at the end of each beautiful day and telling my friends how much I loved them.

Sure, many things happened at the same time right then. That's when I got my narcolepsy diagnosis, went on medical leave from work which was necessitated by the start of the medical discrimination, started pills that caused suicidal thoughts, and that's when I started dating Sarah. My life changed completely, so it's no surprise my life changed completely, but the medical discrimination at work is now gone, I'm on different meds that don't make me suicidal, my narcolepsy is supposed to be under control, and things with Sarah are totally awesome. Why now are my physical and mental landscapes the worst they've ever been?

I am not looking for answers to that question. Or any question. I wanted to speak and I wanted to be heard, but I do not want to talk and I'm not sure I'm able to listen. Thank you for being my friend through all of my craziness and my nastiness.
Chris Podimapokedigimaniac on February 17th, 2011 07:27 pm (UTC)
I haven't been able to find the correct words to state my support here through the challenges you've been facing, but I really do value our acquaintance/friendship, and I wish you a productive journey towards health on all levels!

On a different note, I'm really, really glad the medical discrimination is no longer an issue for you - I'm having to deal with discrimination (not necessarily intentional, but no less infuriating) towards accessibility at my own workplace, and it's a grind. :)
Nyrennyren on February 17th, 2011 09:21 pm (UTC)
Thank you, Chris. I'm sorry to hear about your accessibility issues. I know how irritating those are, even when they're not intentional. My discrimination wasn't really intentional either for the most part.

Your ability to deal with your disability has always astounded and impressed me. I hope you get your accessibility issues worked out!
Dianacontradictacat on February 17th, 2011 07:33 pm (UTC)
I am here, I read, and I care. Will I see you at Intercon?
Nyrennyren on February 17th, 2011 07:47 pm (UTC)
Thank you, and you will. I just hope I'll have time to prepare, which means sewing and learning to dance a specific dance. Hope I have the energy for it.
Benn: bittersweetbenndragon on February 17th, 2011 07:51 pm (UTC)
*hugs* I'm sorry things inside are so sucky when things outside seem to be going well. I hope you can navigate to a sunny shore!

(BTW, it's fibromyalgia - I know this because I frequently treat people who have it.)
Danielle: avatar 2hippie1025 on February 17th, 2011 08:08 pm (UTC)
Simple enough for the doc to say, right?

Dan had both Lyme and Mono within a 1 year span around age 18. He obviously recovered and is very active, but he does have relapses about once a year. They don't last too long, and it's usually just a matter of slowing down, taking care of himself, and letting it pass. Course he seems to be having one now without the chance to take care of himself (due to baby and school), so I definitely feel for what you are going through watching it happen here.

As for the rest, well, *HUGS* and good luck. Glad you have some real positives in your life like Sarah. :)
Persispersis on February 17th, 2011 09:24 pm (UTC)
*pebble* Listening, here if you have need. What sort of sewing are you planning?
Nyrennyren on February 17th, 2011 09:39 pm (UTC)
Intercon costuming, which includes pants! Pants that are made from... PANTS! (don't ask)
It's Just Meits_just_me on February 17th, 2011 10:08 pm (UTC)
Well as always I'm here for you. I'll be more than happy to listen but yeah...not without hitting you with a ton of my opinion :)
The Blue Fairylilitusama on February 17th, 2011 11:18 pm (UTC)
Here and reading and not responding and not expecting any.
Peter Cooper Jr.petercooperjr on February 18th, 2011 01:57 pm (UTC)
Medications (of all kinds) seem to me to often work by making a part of our bodies defective in some way, which often is to compensate for some other way in which our bodies were already defective. (Such as by treating pain by shutting down the part of the brain that deals with pain, or whatever.) While modern medical science has made astounding progress in coming up with medications to treat all sorts of terrible things, sometimes it's really hard to tell whether the treatment is worse than the disease, or just replaces one problem with another. There's really much more that we don't know about the body than we do know. And when the medical problem or side effects from treating it have to do with something related to our brains (which isn't that unusual since our brains do a lot of stuff), then it becomes really hard to reason about, since it's our brains that do the reasoning, and it's hard to know what to attribute to the original problem or medication or whatever.

I don't think that answers any questions you had, so it's good that you weren't looking for answers. I hope you and your medical providers can come up with the best approach we've got with the minimal amount of side effects, despite all humanity doesn't know about its own bodies.
Nyrennyren on February 18th, 2011 04:20 pm (UTC)
The problem in my case is that the disorder is worse than any meds since without meds, I can't live. I can't hold down a job (-any- job in the US), drive, or learn from a lecture. But, being stubborn me, I would continue to try to do those things and I would have hurt others. I've fallen asleep while driving about ~15-20 times in my life (and only three of those resulted in car accidents) and I've fallen asleep while operating heavy machinery in a factory. Maybe I wouldn't still try to pretend everything was normal with my diagnosis when I knew I wasn't on meds, but who knows?

Even the meds that gave me stark suicidal thoughts would have been better than the disorder if they had actually worked to treat it. I would be less of a danger to myself and to others if I was suicidal but not narcoleptic and stubborn.

My problem is that I can't confirm that the meds are having any negative side effects. I don't know that they're having an effect on my behavior. My behavior seems significantly different to others, but not to me.