Saturday, August 23, 2008

A bad day for brain cells, a good day for trying medical equipment

I regret to say that much of Saturday (and I guess now a bit of Sunday) has been, healthwise, a disaster. I have had more seizures than can be counted.

I also stopped breathing for an extended period of time. Extended being about 25 minutes off and on (though thankfully we have an ambi-bag which breathes for me).

However, so many seizures and the results of them (no breathing for example) mean certain brain damage. But lets just say that 80% of EFM or a percent or two less of EFM is still plenty to go around (That is the opinion of Brain Damaged EFM, which we will now refer to as "EFM Lite!" - see, still can do the sick jokes).

However, I and others have already noted speech and other cognative difficulties. Let’s hope they go away (brain damage is like the flu right?). I also, in a great deal of pain and frustration, helpless in a body that left me staring at a patch of ceiling for a great deal of time, let that frustration get the best of me and while briefly ALMOST functional (like I had four fingers working, two on each hand) was stopped by Linda and Cheryl from overdosing on pills. At that time, tired, hurt, and after several series of seizures, I wanted out, I wanted to die while I was still me.

I might point out that while the sentiment is understandable when one continues to experience wave after wave of physical slamming and chipping away at my brain, the entire 10 seconds of deep consideration to terminate, I now consider a bit rash. Linda suggested I go to bed (Translation: Linda put me in bed and then drugged me into a sleep), and think things over.

Right now, I still have minor seizures almost hourly and high levels of heart pain due to the erratics and the general weakness of my system.

I do however want to say Happy Birthday to Dawn and to say that I still got that last bit of your present and now your birthday present has been prepared and is awaiting the postal officer! Ha, I can be suicidal, in seizures, have crap health AND get stuff done - talk about multi-tasking (take that Martha Stewart!)

I am going to rest now, I have answered the comments and will continue to do so. Even during the bouts, or rather between the seizure bouts if and when I a) know where I am, b) know what year it is, c) Remember what my blog is and d) Have enough strength in my hands to type, or hand to type, or finger to type, I will sent emails and answer comments. I have always been a doer and that is how I want to continue. Linda was right to stop me (from killing myself). I wanted to “fix” my problem and choose an easy solution. I was overly emotion and exhausted at the time. Now I am just extremely emotional and exhausted. Seriously, I broke down in tears today because I had to fold up the $400+ special walker that we waited months to get, and now, is folded and put away after a few months of morning use. Linda has said, “We can recoup that when we sell it to your parents.”

I said, “If you expect me to live SO long as to the day my parents admit their need for assistive devices, you REALLY are an optimist (my father talks about having to come down the stairs holding the rail one at a time, and due to his nerve spasms, spending the first hour or two walking into things like WALLS, and COLUMNS and TABLES and yet doesn’t see any need for a walker, nor understand why I think a split level apartment might not be a good long term choice).”

I will do what I can, when I can, and I guess the rest is out of my control. I am going to TRY and take it easy, in the “take it easy and not have a seizure series every four hours” plan. Don’t worry, the whole “going to go off and do badminton or the Terry Fox run" plan is still on. Just, not getting upset, not talking to Beacon or the likes of them. Taking it easy, trying to get strong enough that a few heart erratics don’t keep making me pass out…..I think it is good to have goals!

26 comments:

Anna said...

Hi,
well nothing to say really you sound very balanced though your system don't! Good! Well no use for eypatch, at the moment, pain in eye gone, sight still here.

Today I'm in for anxiety instead wish there were nice patches for that. (A bit less now since reading the blog.)

Just thinking about dignity and so on, it's kind of funny, there shouldn't really be any question of worthiness or dignity even if one have one or more missing functions. Or because of anything else. Honestly we are all more or less fucked up.

SharonMV said...

Dear Beth,
Yes rest, and try to heal the soul a little if not the body. What you're going through must be so hard. sometimes, I can barely deal with the pain, sickness & fatigue I go through. I couldn't imagine dealing with all the seizures & loss of function. I had a period of fainting/passing out spells years ago & that was bad enough. And have had times when I had terrible daily migraines, but fortunately those are in the past. I agree, that EFM lite is still quite formidable.
Will be thinking of you & hoping you rest well.

Sharon

Perpetual Beginner said...

Brain damage may not be the flu, but the brain does have an amazing amount of flexibility. (read, capacity for rerouting and regaining function) From your descriptions of your seizures vs. the amount and consistency you manage to write, I would say your brain is getting pretty good at the rerouting thing. God knows it's getting a lot of practice!

I'm sorry you're having such a lousy day neurologically. I hope that having a more restful day lets your brain ease up on torturing you for a while.

Daisy said...

Hey Elizabeth, just want to throw in that you might want to consider taking the supplement Coenzyme Q-10, which the body uses up during seizures and other types of 'oxygen-brain activities'--might help not to feel so fuzzy afterwards.

(((hugsies))) You are in my thoughts!

Abby said...

Definitely good to have goals - especially ones you look forward to and/or feel excited about fulfilling.

I hope things calm down a little for you and allow you to get a little rest and do the things you enjoy x

Neil said...

Well, what can I say to that It's 11 a.m., and you posted, I think, 8 hours ago, so someone has probably already mentioned that it's only Saturday so far. And brain damage isn't quite like flu, but (as I'm sure you know) the brain can often work around the damage and keep going.

And 80% of EFM is still one of the most wonderful people on the planet.

Zen hugs and hopes for the end of seizures and a bit more quality for the weekend, at least,
Neil

Lisa Moon said...

Sigh... I wish there was something I could say or do to help. If there is, do let me know?

EFM Lite! Made me cackle a LOT, though. *grins* EFM Lite! is still a whole F'in lot smarter than, ooh, say, 95% of the population, I'd say (give or take ;) ).

Hope you're getting some much-needed rest for your upcoming plans.

And screw Beacon! There is a cold, damn, mould-infested spot in hell for the like of them...

wendryn said...

I'm glad something was breathing for you!

Sorry it's been so hard lately, what with seizures, roofers, and stupid people. I do hope it gets better soon!

As long as you can still crack sick jokes, we know you are still in there. :)

Hope you manage to take it as easy as you ever do!

Elizabeth McClung said...

Linda in her usual way said that she wouldn't exactly say I'm "EFM-Lite" but more like Elizabeth Regular size, or "EFM no longer comes supersized!" and then would crack up.

Gaina said...

((HUG)). Just keep living and I'll keep reading for as long as that works for you xx

yanub said...

I like EFM in all sizes and varieties, so just keep bringing it on.

Put your walker on EBay. Someone will want it.

Anna said...

Hi,
feel free to not approve of this comment since it's not a comment on your post. I just thought that you would find this hilarious, as I did.

Well, I watched the news, and it said that they have been trying a new reward system for a university hospital here in Sweden. The surgeons got bonus pay for doing the operations faster. So the quicker they operated, the better the salary.

Doesn't that sort of sound worrying? Do we want doctors to work fast, or good? Because, not suprisingly, it turned out that this system caused the patients to suffer from more complications and a risk to fall ill again.

Scary isn't it.

It's just the thing. I don't believe that hospitals can be pure business.

Lene Andersen said...

Oh, crap. crapcrapcrap.

Gotta say, though, EFM Lite is still better than anyone else regular strength.

big hugs.

Lisa Harney said...

Rest lots, and I hope feel better.

I'll try to get that letter I'm supposed to send you together. Locating the item I want to send has been a bit of a pain. :(

Laura said...

Beth,

EFM lite. That is classic for you. That did make me laugh. So glad that Linda and Cheryl were there to stop that 10 seconds of insanity. Of course, knowing your luck all that would have happened is you got a good night sleep. Forget about the other crap, let us worry about that for you. Package in the mail! Be prepared.
Love and Hugs,
Laura

FridaWrites said...

Your brain is resilient, thank goodness. While I know you've noted a lot of memory loss and other concerns, I am glad that much of your function and memory quickly bounces back. Your brain is still far more sharp than most people's. Thank goodness for the ambi-bag. Hope you get a respite from all these seizures--can they up the Lyrica sometime?

I was asking myself yesterday afternoon, WWED?--what would Elizabeth do?--when I was having a high pain afternoon. At first I thought, she'd go to work on postcards, but after trying to work up the stamina to get a few of my projects or open a book or something, there was no way I could do that kind of thing right then. I then figured out at that point you'd try to take a nap if you were not in too much pain to sleep, and I did and felt better and could get out last night and today. So it's been a better day today.

Neil said...

Hi: Segue time! If people are using Macs, iTunes contains radio stations; one of those stations is Japana-A-radio: Japanese Anime and Pop Music. It comes with lots of ads, but it's free, so deal with it. :)

If you don't have iTunes, or want to register with Japan-A-Radio, go to http://www2.japanaradio.com. I didn't register with them, so I don't know what it sounds like from there, but it would appear that you can listen from the website.

I've just been listening while playing backgammon with Youngest Son, and I found it's not really my type of music. I prefer the traditional section from iranianradio.com. It makes great background music for me when I'm proofreading.

Hoping for a good night for you,
Neil

Raccoon said...

Happy Birthday, Dawn!

Beth, if you're going to try ODing on pain pills, always talk it over with Linda first. And try to always let her talk you out of it.

I was a little concerned yesterday; I'm happy that you were able to let us know what was going on.

Michael

Tammy said...

Beth,
What a shitty few days you have had. I am glad most of you is still there, but even the thought "brain damage" sends shivers down my spine. I hope things start looking up from here.
I received the post card from you. It's fabulous. You have no idea how much they make me smile. I LOVE it.
I may not be commenting much here recently. The modem went out on my laptop, and it may be another week before I get it replaced. I hate dial up, but in my area, there isn't much more of a choice. I am borrowing my mom's computer while here, but I knew I had to let you know, I haven't left ya, just having some minor technical difficulties.
Take care.

Donimo said...

Damn, I had hoped the Lyrica might slow the seizures down. I think you said before that it had helped the pain some, but I wonder if it's even doing that now. I think it can take awhile for it to build up in your system and for you to reach an optimal dose. Is someone able to help you determine your dosing on that?

Now you've got a cool, rainy day (I assume the weather is the same in Victoria as it is in Van today), I hope that it will help you get a little bit of rest that doesn't involve fighting the heat. I don't like rainy days in summer, but when it helps the temp drop I think of you and how that might help a bit. Like someone else who commented, I wish you a bit of emotional rest as well.

EFM Lite made me laugh, but I do think that though you're a lower calorie version of yourself, you don't seem to pack less of a punch AT ALL.

Take care, EFM. I'm thinking of you.

Kelli said...

Sending you some virtual hugs from over here as well. I hope the "taking it easy" plan helps and things get less bad for you.

SharonMV said...

Dear Beth,
Thinking of you all day today. Will be back later & hope we can"talk" then.

Sharon

Neil said...

My suggestion for Reason to live #10: Because Beth McClung is loved. You are loved both online, and by Linda and Cheryl and Maggie.

Linda's THE important one who loves you; please discuss decisions with Linda. And if you don't mind, we're nosey enough to want to know what the decisions are, because we love you too.

Hugs,
Neil

Elizabeth McClung said...

Thank you for all the comments and they really are worth commenting on individually (speed surgury in Sweden, oh yeah, no gloves or anything left behind I am sure!), and Perpetual beginner, the fact that I have one good eye mean anything? Oh well, we move on (cause there isn't another option, I've tried going BACK, and God & universe said "no!").

Thanks Daisy and Lisa, Wendryn and Anna, Neil, Raccoon, Donimo and Laura and everyone. I do have to ask Tammy, did your hubby notice or are they all just still "Good friends"?

I would write more but I am still in FUBAR mode, so I am somewhat limited. Hopefully, unless woken by hammers again, I will be up to my regular levels soon. And I will try to comment then. I lost a day (or two) but still here.

rachelcreative said...

Dear Beth

I am finally caught up on your blog having read your last 16 posts this morning.

Though I wasn't here to comment or read for a couple of weeks you have been in my thoughts.

I tried so hard to find cool presents whilst on holiday for my friends and was woefully disappointed with gift shops.

Though I did spend £20 on cards and postcards in the gift shop of the David Hockney gallery. I was being restrained and could have spent triple that easily!

I am sure you will get to see a couple of those cards at some point in your mail :o)

I'm not going to comment on everything I've read today from the last 2 weeks as that would be too much I think. But I will say I'm delighted that Lyrica is working for you and that EFM chooses to live.

Dawn Allenbach said...

I sent you an email. Thank you for the birthday wishes.

Thank you, Raccoon.