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I was diagnosed with a disease very similar to Lyme Disease called Tick-Borne Relapsing Fever which is caused by an infection of a spirochete bacterium called borrelia hermsii. Usually Lyme Disease is caused by an infection of borrelia burgdorferi, but any infection by a borrelia (borreliosis) is getting named Lyme.

At least we think it is hermsii. The various tests have a weird overlap, and are not 100% accurate. Yes, this caused problems. It is somewhat moot, since many of types of borreliosis have the same treatment: specific antibiotics.

We have no idea when I got the tick bite that infected me. Borrelia hermsii is probably not local to New England where I have lived for over twenty years. It is native to the Rocky Mountains which I visited thirty years ago. So, there is a chance I got it way back then and it just cycled in and out for most of my adult life. It is called “Relapsing Fever,” after all.

We just don’t know when and where I got it.

What we do know is that after several months of antibiotics, I felt better. Which was good, for about a year. Then it slowly came back.

But, Lyme can cause issues between the initial “I don’t feel well” and the final prescription of antibiotics. Since the major symptoms of Lyme are usually, “I’m tired and kind of achy all the time,” doctors want to make sure it isn’t one of the hundreds of other things that can cause that, from arthritis to zinc poisoning. For me, this meant close to a year between when I first went in with flu-like symptoms to finally getting a smoking gun diagnosis.

Now is where the mind games began. Am I just tired or stressed? Is it something else? Such as a cold or another minor health issue? Because the symptoms are so generic you can’t tell. If one of the symptoms was that your skin turned purple, that would be great! You’d wake up one morning, look in the mirror, call the doctor, and they’d give you antibiotics. You’d go to work or hang out with friends and they could easily see you were sick.

But it doesn’t work that way. It is invisible, even from inside.

Now, I want to talk about the symptoms, at least for me. At first it was muscle aches and fatigue. I honestly thought it was a flu at the time. And I mean fatigue. I was sleeping a lot, pretty much all weekend. I used up all my sick and vacation time at work, even taking unpaid days. Fortunately, my work was very supportive.

That's how it started. Then came the neurological issues, starting with memory loss. My memory was never great to begin with, so memory loss was one of the more serious issues. I got real good at taking notes or putting everything in the calendar; to do lists; the whole shebang. This made me very organized at work since I assumed I might forget almost anything.

Apparently, Lyme causes lesions on the brain.

At one point my girl-friend told me to put an upcoming event “into my brain.” She then clarified when she said, “my brain” she meant I needed to put the event into my phone’s calendar. I replied that I knew what she meant and that the pink thing in my head was only good for “chicken noises and sloshing sounds.”

I also had issues finding words, or understanding words. I had my hearing tested and it was fine, but the part of my brain that turned sounds into words wasn’t working. I would just hear mumbling.

In fact, this all could have been so much worse. It took a long time to diagnose, but it was, and there was a hard lab result to say it wasn’t just all in my head or depression. There is a treatment for it. It is a slow treatment and even after the disease is gone, it takes months to recover, but it was something. But, the treatment doesn’t always cure it; instead it can go dormant and not cause symptoms, but also not be affected by antibiotics.

Between the weirdness of the disease and the neurological issues, you start to doubt your judgement, especially when memory is also an issue. You wonder if you should take a day off and just rest, or is that the worst thing because you have to get back into shape and exercise? With the memory issues it is hard to tell if you are getting better or worse week by week.

Since there are no visible symptoms, and often, even from inside, no objective symptoms, it can feel like a bad night’s rest, or you overdid it the day before. Did I walk too much yesterday, or not enough? Then add some cabin fever to make it hard to be subjective, since you will get sick of your bed and your place after a couple of years.

As I write this, it is a perfect summer day outside, good for the beach or something. I might go out. I feel I should go out, since winter will be here at some point and I am wasting the day. Sometimes it is hard to not beat yourself up and call yourself lazy.

On the other hand, I have to rest after putting clothes on or taking a shower. If I talk to someone socially, my brain sort of runs out after an hour. Hard to keep a conversation going when you can barely follow the plot of an eleven minute cartoon. And I am better than I was.

I work in computers, so being somewhat less than social is just part of the workplace, and I can control how much information I need to take in at a time. I can also work from home, which is great when you are really sick, but adds to the cabin fever.

People talk about “invisible disabilities” or “invisible illnesses.” This is one of those, even to the person who has it. It can sneak up on you: you think everything is going well one day and then the afternoon hits and you can barely move. People will see you being active and assume you are healthy. Hell, I will see myself being active and assume it is over, and the next day I am exhausted.

I don’t have the answer to that, not even close. I try to “push myself, but gently.” Still trying to figure out what that means. There is just no way to know.

Am I cured right now? No one knows. Maybe? Maybe I will get a bout of it again.

This bring me to the emotional exhaustion that sets in. Even if your body is more or less able to function, you can just run out of cope. Cope is a limited resource. People only have so much willpower to be able to function in a day. Most people very rarely get really low on willpower; some people have never run out and don’t understand that it can run out.

But it can run out, and it can get to the point where you have very little in a day, even after a good night’s sleep. I have not found the Cope Potion. It is like a Mana Potion or a Healing Potion, in that it magically recharges your Cope, and like a Healing Potion, it doesn’t actually exist.

It would also help to have a Cope status bar, so you can easily see what does recharge it. Resting and reading or watching television or a movie does help, but only so much. Plus, when the cabin fever hits, both of those options stop working. I also have issues with reading more than a few pages at a time because of the brain issues.

Weirdly, sometimes an activity that is very enjoyable and recharging when you are healthy can become draining when you are not. Going camping can be a lot of fun, or it can be hours of packing and loading the car, followed by setting up the tent, and so on. A party with a lot of people can be fun, or horrible.

And, of course, these are all moving targets. What was exhausting the day before might be fun tomorrow. And sometimes what was fun five minutes ago is suddenly exhausting. It can turn on a dime. Not often, but sometimes you hit empty and never even see the “Low Cope” light.

This brings me to why I wrote this: I want people to understand that sometimes I just can’t. I know it is hard to deal with someone who might be having a bad day and just have to shut down with little or no warning. Or someone who never wants to go anywhere. It isn’t fun from my point of view either.

I hope I will slowly get better and more alive. I want to get better. I am learning to push myself when I can, and take it easy when I can’t, and to be okay with myself either way.

I don’t know what will happen.

firebreathnchkn: (Default)
Me and Stompy



Stompy

Emails

Apr. 12th, 2017 09:44 am
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Doesn’t everyone keep a folder of cat memes for work emails?

First!

Apr. 9th, 2017 06:05 pm
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First post here! Now I just have to remember my formatting commands.
firebreathnchkn: (Fire Breathing Chicken)
So, I saw the latest Hobbit movie last night, and there is a winter storm coming. I am sure these are factors in a dream I had last night.

In the dream, I was watching a movie. The movie was about a dragon that was attacking and taking over Boston. The dragon looked just like the movie Smaug, except it was bluish and breathed a frigid blast of cold and snow.

Coming down I-93 was an army of elves, riding ostriches. I guess they live in New Hampshire. (Mystery hill!) Each elf had a lance and each ostrich had magical earmuffs and scarves to protect them from the cold. (I think the scarves were holiday themed and festive.)

They trouped over the Bunker Hill bridge and attacked the dragon. The dragon didn‘t fear the elves, but for some reason thought the ostriches had cooties and fled the scene, complaining about how nasty the ostriches were in a very effeminate male voice.
firebreathnchkn: (Default)

This is a report a character of mine in a role playing game wrote to his mentor/goddess:

Greetings and Glory onto my most Holy Goddess:

I bring you tidings of our adventures across two worlds, tracking the dark and mysterious Lords of the Abyss. It began in the small kingdom of Skancar. (A truly dismal place, overrun with petty politics and libidinous weasels. Lord Luwon partook of a weasel's affections as part of one of their "ceremonies." I was spared the horror of witnessing this unholy congress.)

After a misadventure with the temple of the sun, which I will not bore you with (though I will ask your blessings on my progeny who will be appearing in eight or so months), we discovered that a certain captain Faisal, of the ship Wind Treader, was doing dealing with rogue merfolk who were in league with this previously unknown race of beings who have the most very pompous self-appointed title of "Lords of the Abyss."

As an aside, Captain Faisal, is most likely a son of the so-called "Emperor" of Skancar, unknown to this emperor. Sad, really. Faisal had hopes of becoming head of their sad, sad navy.

In either case, these rogue merfolk split from the main merfolk community (a generally upstanding community) and somehow met with these "Lords." This resulted in an agreement where the merfolk learned a method to siphon life force out of slaves and give it to the "Lords."

Faisal decided to start raiding elven ships to feed energy into this diabolic scheme. Which, as you may know, was causing friction between Skancar and the Empire.

We managed to stop his nefarious plans, finding the colony of rogue merfolk with their dark allies. After destroying this colony and killing their corrupted mage/priests, we also managed to kill two of these "Lords." [Please see attached illustration.] Captain Faisal was brought back to the Empire for further questioning.

At this point we went to Port Latronii, in Hell, to learn more. We met with a human named Markus who we did a favor for in exchange for information and monetary recompense.

(This favor involved heavily skewing the odds in their barbaric gladiatorial games. We accomplished this through freeing several members of the race of the Cat-People. Many of whom wished to return to their native lands, though one, since given the name Zhao, decided to align himself with Dryfinia. You may have heard rumors of one of this noble race in our fair capital.

During this attack I defused a particular nasty magical trap disguised as a humble rock.)

Markus then informed us that dark demons were involved in some sort of trading agreement with the "Lords," where they were giving the "Lords" energy in exchange for some goods.

This seems very odd, since after much pondering we are unable to figure what would be so valuable to Dark Demons that they would trade energy for this! (Please note that this is the only exclamation point in this report.)

We are going to proceed to Ch’in Tse Dao to question him about any information about either the politics of the Dark (something Markus was strangely unable to help us with), or give us insights on what would be so valuable they would trade energy for it.

Yours in Service and Worship,

Lopaka

firebreathnchkn: (Default)

In forty years, will all the people who posted nudes on the internet stumble across a pic of themselves and think:

A) Ooooh, I wish I hadn't done that.
B) Wow, I looked hot! Go me! I'm posting this to FaceBook!
C) OMG, remember when posting a nude wasn't mainstream and people hid their faces?
D) other


Random

Nov. 10th, 2011 10:06 am
firebreathnchkn: (Default)

How many shins can a shinto tow, if a shinto could tow shins?

In other news, I wonder how many showers a porn star takes in a day. Hopefully, a lot.

Power

Oct. 30th, 2011 09:36 pm
firebreathnchkn: (Default)
And I has power!

Snow

Oct. 30th, 2011 11:53 am
firebreathnchkn: (Default)

I have no power, but am running my wifi and DSL modem off of a marine battery!

firebreathnchkn: (Default)
Bwahahahahaah! I am now a trustee for my condo! Soon the world! Bwahahahahahahahahaha!

WTF

Oct. 22nd, 2011 01:07 pm
firebreathnchkn: (Default)

How the hell did my computer mouse get full of cat hair? FULL!

Tea

Oct. 21st, 2011 08:58 am
firebreathnchkn: (Default)

I like my tea like I like my women: hot, full bodied, and green.

My tweets

Oct. 19th, 2011 01:22 pm
firebreathnchkn: (Default)
  • Wed, 07:45: I am now on Twitter.
  • Wed, 09:12: If today continues as this morning has gone, I will have set myself on fire by dinner time.

Tweets

Oct. 19th, 2011 08:02 am
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I am now on Twiiter as FireBreathnChkn. I don't plan on posting, but if you are there let me know so I can follow you.

http://twitter.com/FireBreathnChkn
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So, as you may have heard, Camilla-Anna and I went to London. It was an amazing amount of fun. I am going to report day by day, since that is how I remember it.

Friday:

We got to the airport. Getting through security was a lot easier then either of us dared hope. So then we sat for three hours since we had scheduled a lot of spare time, just in case. But it was better than being late.

Then we got on the plane, and sat. The plane taxis about half-way there. Okay, it taxied a lot. It was cloudy and at night the whole way over, so we really didn’t see anything until we arrived, on…

Saturday:

We arrive at the London-Heathrow. Oh my. It is a very large airport and we were about 95% of the way to being zombies. We actually managed to walk almost as far as if we had just walked straight to London from Boston, but we did find the bus. (Travel hint: get a map of the airport you are going to beforehand and find out where you will need to go.)

The bus ride was extremely surreal. Everything was swapped left-to-right. I swear my brain was so tired that it almost decided that something was wrong with my eyes and reversed the image for me, based on where the cars were. I told Camilla-Anna that if I suddenly lose the ability to read that is why.

We arrive at the Bed and Breakfast at about ten local time. Almost no sleep. Punchy.

We have to wait until two to get our rooms. Oh. Ugh.

So we wander. We were about three blocks south of Buckingham Palace so there was a lot to see actually and I even remember some of it.

We had lunch and went to something called the Royal Mews. It had nothing to do with cats, instead it was filled with horse equipment, horse drawn carriages that were gold-plated, and even a few horses.

Finally we get in to the B&B and took a nap. Then we had awesome Indian food and SLEPT.

Well, okay, we discovered that voltage converters die. The fancy-ass Brookstone one I got didn’t last three hours. What you want is to make sure everything you bring can handle 120V and 240V, which almost everything does these days, and then get the $10 widget that changes the shape of the plug and nothing else. The owners of the B&B loaned us one, and we get another at a local electronics store.

Sunday:

Sunday morning was much better. We got up and discovered the English Breakfast, which meant scrambled eggs, toast, a mutant form of bacon, tea, a grilled tomato (which I still don’t quite understand), and some random other thing from mushrooms to baked beans. It was okay, but got old after a week.

Then we got a two-day pass on a topless double-decker bus for touring London. I took a lot of pictures of buildings as they went by. Some amazing architecture. We also started to notice a lot of scaffolding. More on this later.

So we were driven around and got to see a lot of the city this way. London’s city hall is very ugly.

Monday:

Monday we went to the tower of London. Wow. All things medieval. Siege engines, castles, moats, and lot of arm and armor. I highly recommend this if you have any interest in history or things shiny. There was a lot of shiny in London.

The cafe was pretty good, something we found at every museum cafe. They also all serve beer.

Tuesday:

Tuesday we saw Stonehenge and Salisbury Cathedral. To get there we signed up with a tour guide who took care of getting train tickets and a bus to get us there. Very nice.

First we did Salisbury Cathedral. Beautiful. Huge. Amazing. Really worth the time to get there.

We saw one of the Magna Cartas there. Amazing calligraphy. The woman who was the tour guide for the room it is kept in was so impressed we knew about calligraphy she let us hog it for a while.

Then we went to Stonehenge. Stonehenge is cool, but is only really fun for about an hour. You can’t go into the ring, or frolic naked while throwing flowers at people. This is partially because the wind would freeze you and blow the flowers away; then the sheep would mock you.

The tour guide was a one-man folk process, so be warned.

Wednesday:

Wednesday we saw Westminster Abbey followed by the Victoria and Albert Museum.

Westminster Abbey is also a very impressive cathedral. There is an amazing amount of history, and people, buried there. In one room were a collection of helmets with various heraldic going-ons on top. I thought one helmet had a bear playing the bagpipes, sadly it turns out I was correct.

The Victoria and Albert Museum is a very impressive art museum. We mostly stayed in areas we enjoy which meant some Asian, but mostly medieval European art.

Thursday:

The British Museum is huge. It took almost two days to hit the areas we wanted to see.

Sadly, the first day was cut short by someone stealing Camilla-Anna’s wallet out of her purse. In the mummy display. It is a free museum and there are both crowds and lots of distracting things. So be careful.

On the way back two middle-aged woman got in a slap fight on the stairs coming out of the underground. That was different.

Friday:

Day two of the British Museum went much better, starting with Camilla-Anna getting her wallet back, minus the cash, but with everything else. That improved everyone’s mood.

With more care, we took in some amazing Egyptian art, including a lot of cat-themed art. Yay! There was also a ton of artifacts from other times and places in history and the Sutton Hoo display. This is a collection of sixth and seventh century artifacts.

Many, many of these artifacts were very shiny. I guess gold and colored glass keep well.

We had lunch at the posh cafe here. When you order, they add or take away your silverware based on what you will need. The food was also good.

For dinner we ate at an even posher Italian place. You didn’t get a server, instead there was a flock of them with some sort of hive-mind that would swoop in and bring or take away stuff.

Saturday:

Our last day was spent at the Museum of Science. This had lot of steam-era technology that was really cool, and in some cases still working. They’d fire up this huge engine that used to power a whole factory of looms. It was fun to see all the little kids with their mouths open watching it go.

I also saw one of the original Atwood’s machines. This made me very happy.

Their wi-fi was the fastest I have ever seen.

Sunday:

Our last day went very smoothly. We got up, took the bus to the airport, got there in plenty of time, and got on our plane. Sadly, there was a lot of headwind, so the flight took a while.

Overall:

What did I learn? What did I enjoy?

Well, British people, at least in London, are very polite but still pretty warm and friendly. They will actually move if you say, “Excuse me.” The trains, buses, and the underground are crowded but nice, clean, and very fast. Get what they call an Oyster Card so you can just zip through the paying process.

The food was all around excellent, except for one lame sandwich shop which was full of fail. All the museum cafes were actually very good. The pub food was good, at least the fish and chips were. Oh, and Guinness beer is a very different beast over there. Try it.

We had pub food, cafe food, a lot of Indian food and Italian food, and one great Thai place. All good. Not cheap though. Around $30 or so in US dollars per person.

Let the professionals drive. Take the underground (“Mind the gap.”) or a bus, or a taxi. Really. If the left-hand driving doesn’t get you, the rotaries will, or some other lunatic. Don’t cross except at cross walks when they tell you to. It is pretty easy to do this, but don’t try to zip across. Even the natives won’t.

Wi-fi is the same over there. Bring your smart phones or tablets. You can stay in touch and look at maps and stuff to know where to go.

It seems like half of London is covered in scaffolding, from modern buildings to fountains and statues, to even parts of the Tower of London. They are cleaning all the coal pollution off the buildings, and making sure everything is ready for the Olympics next year. We got a little punchy about how much scaffolding there was and took a lot of pictures of just scaffolding. Really.

All in all, it was one of the greatest, most fun weeks I have ever had. Pictures will appear soon.
firebreathnchkn: (Default)

Had a great time. More later.

firebreathnchkn: (Default)

So today we took a bus tour. They drove us past the chapel that, at that moment, Paul McCartney was getting married in. We didn’t see him, but we saw the crowd and the car waiting to take them away.

We also saw a lot of historical buildings, and the giant Ferris wheel called, “the Eye.”

I had fish and chips and it was yummy, with a Guinness that is totally different over here. Amazingly different. I actually like it over here.

We were twice asked for directions. I guess we don’t look like tourists.

They sell vibrating condoms here in pub bathrooms.

London

Oct. 8th, 2011 06:12 pm
firebreathnchkn: (Default)

Ha-ha! I'm in London and you're not!

firebreathnchkn: (Default)
Do you know why I like How I Met Your Mother? It is because they never use the Idiot Ball, or any of its cousins.

When someone half overhears something, they simply ask; when someone in a relationship sees their partner doing something that looks suspicious they don’t jump to crazy conclusions, they ask or they assume there is a reasonable explanation.

In fact, I think the writers deliberately skewer these tropes to parody other, lamer, comedies, or to show their characters are both bright and genre-aware enough to not act like typical sitcom characters.

And I am hot for Lily.
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