h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Over this last weekend, I experienced two episodes that touch so deeply on my own strongest triggers that I thought I should post here.

This last Saturday, I got out of bed at 5:30 AM to get ready for the faire.

I got out of bed, but, no matter how hard I tried, I didn't really wake up.

I went to the bathroom and stood before the mirror alternately dreaming and waking to prevent myself from falling over while I tried to remember what it was I was doing there.

I managed to take my morning medications but it took me close to half an hour, before I had poured out the dosages and taken them after triple and quadruple checking to make sure that my regular routine, designed for precisely this reason, had not been mistaken.

I shaved myself and managed to stay awake for the whole process that involves movements so trained by now that they require little thought and little direction.

After I awoke again, I cleaned the leftover shaving cream from my face and performed the various other actions of a person getting out of bed after an all too short four hours sleep.

I grabbed my usual breakfast of a handful of cookies (biscuits) but the usual crunchiness didn't prevent me from falling asleep several times with my mouth full of otherwise tasty food.

After pulling on the chemise that underlies my costume, it only took me an hour and a half to pull on my knee high stockings. And it was with extreme relief that I received Richenda's suggestion that I wear the slippers instead of my thigh high boots, which I had been fearing that I would never manage to get on at all.

Pulling the rest of myself together to the point that I could walk out to the car for the ride to the faire only took till 9:30. Of course, I am supposed to be working the front gate from before that time, but I was determined to make it to the faire this last week-end of the run.

I got into the car, with Richenda behind the wheel, and noticed that for the first time that morning I felt like I might be close to coming awake. Richenda started the drive and I immediately fell asleep, waking periodically to find myself fallen over sideways leaning on her shoulder or in some similar awkward position.

I was always having an interesting conversation with someone, whether it was Richenda or someone else who wasn't there. And, the conversations weren't necessarily distinct or intelligible, even to myself, when considered a fraction of a second after my having spoken and shortly before falling asleep again.

Of course, since I suffer from sleep apnea, I would always awaken with the additional terror of not having enough to breathe. But, I'm pretty used to that after all these years, so it took some consideration before I could really place the cause for my discomfort.

I came pretty much awake as I climbed from the car after an hour's drive. I still had no idea why this should have happened.

Please note that I have a similar problem every day for some period of the morning or early afternoon. Though it almost always was restricted to when I was trying to consider something in detail that I found myself drifting off into vivid images and sudden awakenings as my body fell in some direction or another. For this reason, I take a medication similar to Benzedrine which is intended to help combat what my doctors take to be a side effect of the drugs I am taking for other reasons.

Recently, I have discovered that I can take all my morning meds, including my 'wakey uppy' pill and go directly back to bed to sleep for another two or three hours.

I'm authorized to take a second dose in the afternoon, if needed, but I have found that it only helps for a couple of hours after which I nearly always crash into a worse situation than if I had not taken it.

But, this Saturday morning was an experience such as I had never had before.

Nor had Richenda ever seen me in such a condition. I hope you all understand that she was more frightened than I was. After all, I was asleep.

I managed to get through my day at the Faire feeling progressively better. But, of course, as I felt better, I also felt more and more terrified. It was clear that my mind was failing me in terms of dependability and *that* is my single most effective trigger.

Sunday, I awoke with little difficulty, dressed, and was ready to go to the faire in more like my usual time. It turned out that we were running late in any case, because we had brought home house guests and things just ran slowly.

Of course, as soon as we started the drive, I fell asleep, but, as I recall, it was more like my normal issues and not so overwhelmingly overpowering.

Then I began working the front of the faire and after one large tankard of lime-aide (my usual morning drink), about one hour or so, I found myself becoming sleepy and went behind scenes to try to recover.

Three hours or more later, after finding myself in increasingly ridiculous positions, where I would fall asleep before fully recovering from the previous awkward awakening, and after attracting the attention and concern of seemingly the entire working population of the faire (that would be about 800 people) who kept upsetting me by asking if I was in need of help when all I wanted to do was fall back asleep again and, at the same time, to avoid finding myself face down in the dirt in front of the bench I kept falling off of, I managed to get to me feet with the intention of going to my car to catch a nap.

My staggering, at that point, and near collapse, which I thought fortunate since it left me in a position to see my hat and gloves which had fallen behind the bench, got the attention of a good friend, H'venly, who ran to fetch the only person capable of managing me at that time, Richenda.

They both returned as I was still trying to stay awake long enough to actually reach down and pick up my hat and gloves without actually falling any further. (Imagine me doing my best imitation of London Bridge falling down in ultra-slow motion with the aide of that same bench while wearing Elizabethan garb and about 40 pounds of pointed and sharpened steel along with various other attachments, none of which I was prepared to lose track of.

Richenda told me that I was going to the first aid area. I told her I was going to the car. She and full balance of available security people helped me into a golf cart and carted me off to the designated place of collapse and qualified attention despite my continued protest as to the futility of all such actions.

There, I was overpowered by the concern of all my friends who were unable to figure a reason for my behavior. After gradually stripping me of my steel, the belt it hung from, and my spurs, garters, and boots and after sending Richenda running back to the car for the list of my medications, which I can never remember in any case, I found myself falling asleep in he ambulance as it took me to a local emergency room.

I was becoming more and more impatient and, I am told, belligerent (something almost totally foreign to my normal behavior). I was also finding it more and more difficult to speak without slurring, which, given that I was still in acting mode, made me even more frightened, angry, and, of course, sleepy.

I slept my way through the blood draws, the x-rays, the cat scan, and the attention of a very patient and efficient medical staff who simply grew more and more perplexed because they couldn't find anything wrong at all -- other than the fact that I was clearly having way too much trouble staying awake.

About 5:00 PM, I woke up. That was that. Richenda and I had a little picnic there in the emergency room. I was discharged and we went back to the faire where I wandered the grounds for the last hour and then another half saying good bye and thank you to all the people who had been so kind and helpful despite all I had done to prevent them.

Then we went to dinner with some of our friends and followed by an hour or so at the cast party before heading home to fall over.

The next day, Monday, I got up, went to my computer, and fell asleep. I woke up a few hours later to the sound of incoming mail from Richenda, asking me to please get off the computer and call her before she completed the nervous breakdown which she had begun at work over concern for whether I had lit a cigarette and burned the house down.

I, of course, knew I was just fine -- except for this problem with sleeping or, more accurately, staying awake.

Now it is 6:00 AM Tuesday morning and I haven't been to sleep yet and don't feel any need to.

I doubt I can describe the kind of placid terror I am feeling. I doubt I can describe the complete fear I am feeling that I am not allowing myself to feel. All I can think of is that it is happening again and I don't begin to know what to do.

To add to all this, I find I am scaring the assorted children of all ages around me, not to mention the person I love and cherish most, Richenda.

Sorry. I'm still working on it.

I love you.

Barton

We love you too and we're thinking of you. Take care and be strong.



C+C

Get all the blood tests you can, vitamins, minerals etc etc.

Can't think what else to say, except for good luck with this, try to find out what is causing this. Hope to hear some good news soon, love to you and Richenda.

BTW: did they do an EEG, too, or just a CT scan?

No EEG, which seems very strange.

They did find some kidney malfunctions. Which I don't understand yet, but I'm going to look them up.

Myoglobin was way up and very slowly coming down -- big surprise.

Barton

Just as reassurance, the type of tests they do as screening for kidney stuff are not incredibly specific -- the vast majority of people (even diabetics) who test positive actually have completely healthy kidneys. This is why they usually wait until you have several positive tests at different visits, and using the quantitative rather than screening tests for at least some of them, before they start talking about nasty things like biopsies and whatnot.

But if I were in your shoes, I'd be calling my primary care doc (or neurologist, if you have one) and pressing for an EEG (although it would have been far more useful had they done it while you were still in and out of things).

Mikey, who has had to pee in way too many cups and get way too many blood draws, all so they can look at numbers that won't matter in the end anyway.

Frightened, scared, alarmed, terrified, PANIC.
Frightened, scared, alarmed, terrified, PANIC.
Frightened, scared, alarmed, terrified, PANIC.
Frightened, scared, alarmed, terrified, PANIC.

Now that I have that out of my system for the moment...

And not to down play Barton's fears, but having a major need to share my own as well.
A few items to fill in the blanks, so to speak.

Saturday

It took him almost a half hour to make it from the green chair in the family room to the kitchen entrance (about 8 feet) and another 10 minutes to the laundry room (about 2 feet). He would take a step and start to fall over. He would start a conversation and in the middle of a sentence go from intelligent to pure gibberish (his biggest trigger). About this time I suggested that rather than go to the faire, perhaps we should go the emergency room. His comments...they won't be able to do anything, so why bother. He started to help load the car and actually managed to carry out his kit and my glasses in the time it took me to finish dressing, make lunch and load the rest of the items.

What Barton didn't add "...concern for whether I had lit a cigarette and burned the house down. ...". It WAS a very valid concern considering that while on the way to the faire on Saturday, I turned my head and saw smoke rising from his lap. "Honey, what did you do with your cigarette?" "I threw it out the window" "Honey, why are you on fire?" "I'm not on fire." "Ok, then, why are you smoldering?" Barton, looking down and seeing smoke, "Oh." "Perhaps I should pull over?" Barton gets out of car. "Sorry, I can't find anything. I must have thrown the cigarette out after all." "Honey, there is still smoke rising." "Oh, here it is."

I started waking him about a half mile from the faire. I asked him what his plans were because I thought I should take him straight to medical. He left it up to me because by his own admission, he was incapable of making any decisions. I took him straight to medical. They let him out an hour or so later.

Sunday


He was fine for all of the time at home and most of the way to faire. Then his comments went from intelligent to gibberish. Liam, who was riding with us, didn't say a word. At that time I assumed it was 'normal' behavior.

About an hour after we got to the faire, I needed a costume fix. Barton was behind scenes. When I asked for help, the belligerence was back. I was afraid we were about to have a repeat of Saturday. Not more than a half hour later, I saw H'venlee come running out of the back of box office.

A thank you is in order here for our security and medical staff. I have seen less belligerent drunks that Barton was at that time...and he is not a small person.

They took him up to medical. I told them I would come up and check on him just as soon as I could (it was almost quitting time). I stopped for a quick sandwich behind scenes, when security came bursting through the gate, "Are you Candy?" "Yes." "They're sending the cart for you." (They don't usually do that...after all, the cart is for “emergencies".)

When I made it back to medical, we were given the 'choice' of either going to emergency on our own or having the squad take Barton. I said I would drive him, but then his sats went all funny. They checked his sugar level and found out it was 207 (‘his’ normal is around 150 normal is under 120). So we no longer had a choice. After changing out of clothes, I followed the squad.

I spent the next 3 hours watching monitoring and listening to nurses try and wake him. After all, how many people do you know that only breathe eight times a minute? All of a sudden, like the tide going out, he was back. He referred to what was happening as waves.

Monday


I spent part of Monday having a nervous breakdown in my boss’s office. With all the sh*t I have gone through in the past, this is the first time I have fallen apart at work. Josh is willing to let me flex my hours so I put in 4 nine hour days and one 4 hour one…and it can be any which day I need. I am too terrified to let Barton drive. It’s bad enough his is home alone. When he falls asleep online, I have no way to reach time. I was lucky the incoming mail I sent woke him.

Tuesday


When I came home today, his speech was slurred again, his mouth was extremely dry and he was having trouble navigating (these are some of the same symptoms from Saturday). I told him that we had to coordinate our appointment to match my work schedule. When he told me that it might not be possible, his tone was bordering on belligerent, again.

He has since tested his sugar and it is 240! We have a new monitor on order (it will be here Thursday). They no longer make test strips for his current machine and the ones he has been using expired in December of 98!*!*!**!*!* Needless to say, they might just not be accurate (sigh). If his diabetes is out of control and is causing some of his problems, it would give us an answer as to what is going on. It still would not be a solution, but rather a new problem.

Our doctor is out of town and Barton can’t get in to see him until September 11.

Updates as they become available.



Why does it take a disaster to appreciate what you have?
I was so afraid of losing him.
No, he wasn’t in any physical danger.
The danger he was in was much worse.
"Flowers for Algernon" comes to mind.



“It was clear that my mind was failing me in terms of dependability and ‘that’ is my single most effective trigger.

I think. Therefore, I am.
Without rational thought, he is lost.



Petty problems were put aside.
I won’t lose him. I can’t lose him.
Bashert. We are one.

I CAN NOT LOSE HIM.

I don't care how hard you try, you can't lose me. I leave bread crumbs, unroll thread, blaze markings, and build cairns. I know when I have a good thing.

Of course, it might take a while for me to get back, I seem to keep falling asleep --- and turning beligerant. That last must be because I can't handle the idea of losing you, either.

James James Morison Morison Weatherby George Dupree,
Took good care of his lover and tried as hard as might be
To keep her comfy and happy,and she did the same, you see.
He always said to his lover, 'Lover,' he said. Said he,
'Don't ever go down to the end of the town,
If you don't go down with me.'

James James Morison Morison (otherwise known as Jim)
Went to work at his office and she thought she'd go to see him.
She hopped the number ten streetcar, and never was heard of again.
James James called out the search dogs and all the king's horses and men.
It seems she was gone till well past the dawn.
And was lost where she'd shouldn't have been.

Okay, I'll finish this parody some other time. No! I am NOT sleepy!



Love,

Barton

There could be many reasons for this Barton.
Some medications build up and can start to affect you differently.

Have you rechecked your prescriptions?
Are they the right ones and the same dosage as usual?
That is the most common mistake in medication.

Do keep up with those tests and do not let it go if they want to and it is still happening. Drink plenty of fluids, a glass with each round of medication.

If your sleep apnea has become more severe, which can happen with medications you need to know that. It can make you weird sleepy ,takes you by surprise.

Richenda this is very difficult to watch! I hope you have the answers soon. If you have no "normal" (for you) day-night please go back to the emergency room.

Many medications can give you a false sugar reading too.

One more minor episode this past weekend.

We sat down and talked about when things started going 'strange' and determined it was right after they switched antibiotics (he is currently on Cipro). Last night I went out and checked out Cipro. Got all sorts of conficting info but the important part was it is contraindicated in diabetics..it raises glucose levels. However, in some cases, it causes servere hypoclycermia. (His readings bounced from 240 to 61 and everything in between). (Make up your mind...neither scenario is good).

Other possible side effects, confusion, agitation, irritability, depersonalization, phototoxicity and manic reaction.

Today we call the doctor and see about finding another antibiotic.

Something else that get's added to the list.

Much as I hate them, I need lists right now. My mind doesn't seem to be able to focus on anything relating to time. My short term memory is worse than usual. My functionality though improving is still only barely adequate.

More on these problems as they become known. Meanwhile, thank you for your concerns and comments.

Barton

Medications are always a place to look. So many mess with your blood sugar or give false blood sugar readings, which can lead to trouble. I hope you are on the mend.

Nothing wrong with lists. That is a good probelm solving skill, good for you!

The problem with my using lists is that I never used to need them. Accepting that I need them now means accepting that I have deteriorated to that point.

Which I have. Which I do. Which I hate.

Now. all I need to do is learn to remember to check the lists.

That probably means putting up big signs that say things like, "Thimk!" and "Check the liszt!"

After which I need to set up timers to go off every 5 minutes to remind me to read the signs.

After which I need to train the dogs to remind me to pay attention to the timers.

Which will guarantee that I don't get anything done but a lot of list reading.

But first, I need to put all that on the list to get done.

Barton

I understand.
Me 2

I wish you strength Barton and Candy ...

My own big problem also relates to losing my mind ... my mind being *me* in every sense. My mental problem ... paranoid schizophrenia ... and the worst-case scenario that can happen ... and the way it debilitates me mentally ... is hard to bear.

My prayers are with you Barton and Candy.

As are ours with you, Willem.

Barton