The crash I was mentioning? I've been going downhill most of the day.
Whee.
Monday, August 31, 2009
Sunday, August 30, 2009
Sometimes, this disease makes no sense
For weeks and weeks (months really), I've had the "norm" of 6-8 hours of functional time in a day.
Today was very much an outlier. VERY much. I think 6 weeks of unused energy all got released today. Or really, starting last night. Could *not* sit still. If it hadn't been for the Lunesta, I wouldn't have been able to sleep, either. Pulled out embroidery floss to sort -- the first time I've brought that much embroidery stuff out in over a year.
Today though? Today was even worse. I could NOT sit still. Period. Finally went over to mom's and helped her with some redecorating upstairs. 14 hours straight today. Do you know how long it's been since I've been able to go 14 hours without a nap, let alone *energetic* and *moving around* and moving books and helping move a small bookshelf from one side of the room to the other, etc.
MONTHS.
And then to come home and not *crash*? To slowly settle down into a relaxed state? Finally able to sit and stitch?
I'll pay for it someday this week. I always do. Probably with 1-2 days where the *only* things I can do are get up to go to the bathroom and to eat. But... now I have 4 of the shots behind me... maybe this will be different.
I can only hope I'm on an upswing... preferably a -very- long term one.
Today was very much an outlier. VERY much. I think 6 weeks of unused energy all got released today. Or really, starting last night. Could *not* sit still. If it hadn't been for the Lunesta, I wouldn't have been able to sleep, either. Pulled out embroidery floss to sort -- the first time I've brought that much embroidery stuff out in over a year.
Today though? Today was even worse. I could NOT sit still. Period. Finally went over to mom's and helped her with some redecorating upstairs. 14 hours straight today. Do you know how long it's been since I've been able to go 14 hours without a nap, let alone *energetic* and *moving around* and moving books and helping move a small bookshelf from one side of the room to the other, etc.
MONTHS.
And then to come home and not *crash*? To slowly settle down into a relaxed state? Finally able to sit and stitch?
I'll pay for it someday this week. I always do. Probably with 1-2 days where the *only* things I can do are get up to go to the bathroom and to eat. But... now I have 4 of the shots behind me... maybe this will be different.
I can only hope I'm on an upswing... preferably a -very- long term one.
Saturday, August 29, 2009
Friday, August 28, 2009
Where we are now...
So, I'm on med leave, I'm getting ATP shots, and I'm just -loving- the insurance companies and how an insurance company nurse knows more about this disease than a specialist... (Yes, a little sarcasm there).
So in order to get the short term disability we've been paying for for years (sigh), I have to undergo more tests. Tests whose only purpose is to prove to the insurance company I really am sick.
Specifically, a functional capacity exam (do you know how hard it is to find someone who even knows what one is? We -finally- after a week have a name to call on Monday) and a neuro-psychological exam. I'm scheduled for the second on Thursday.
But the search to find someone on our side of town (instead of the 45 minutes to an hour it takes to get to the specialist) who will administer the ATP shots even if I have the things -in hand- continues. Unfortunately, mom and hubby both have problems with needles, so they can't do them.
I've learned the technique behind self administering, but haven't actually -tried- it yet. I may have to on the day of that test since Thursdays are my shot day.
Whee.
So in order to get the short term disability we've been paying for for years (sigh), I have to undergo more tests. Tests whose only purpose is to prove to the insurance company I really am sick.
Specifically, a functional capacity exam (do you know how hard it is to find someone who even knows what one is? We -finally- after a week have a name to call on Monday) and a neuro-psychological exam. I'm scheduled for the second on Thursday.
But the search to find someone on our side of town (instead of the 45 minutes to an hour it takes to get to the specialist) who will administer the ATP shots even if I have the things -in hand- continues. Unfortunately, mom and hubby both have problems with needles, so they can't do them.
I've learned the technique behind self administering, but haven't actually -tried- it yet. I may have to on the day of that test since Thursdays are my shot day.
Whee.
So, a little background
I've never had the stamina of my peers. At least not since I had mono in high school. But while annoying, it wasn't "disabling". I had no problem with school, made it through for my bachelor's in Geophysics, then worked full time for a few years before I added getting my Master's (while working) to my schedule. And participating in the embroidery guild. I was even designing my own patterns.
Long way of saying, I was burning the candle at both ends and the middle, and we always joked that I'd eventually run out of candle.
Well, once I finally got my Master's... yeah. There went the candle. Fatigue finally set in entirely, and it hasn't left me since. That was over a year ago.
The nice thing is it waxes and wanes... so some months, I've been able to go on vacations and other than the fact that I had to drop the embroidery guild and going out with friends, I can carry on a fairly normal life.
Make that could.
Past few months, I've fallen into a slump and other than a good day here and there, I'm pretty much able to get about 6-8 *functional* hours in a day. The rest of the time, I can maybe watch TV... lie down and think... hm... that's about it. Do you know how boring and frustrating that can get?
And those are on typical days. Oh, those hours are also in 2 clumps of 3-4 hours each.
Bad days, it can be a struggle just to get out of bed, take a shower, and get to the kitchen to eat.
So, needless to say, I'm wanting to find something that will make me feel better. To go from enough energy to work full time and go to school and still play games and such...to the brain stuttering when trying to write even at my best of times? Not fun. Very frustrating, to say the least.
And I don't even have it as bad as some do.
Current status? A friend pointed me to a specialist here in town who has put me on ATP shots. And... they're helping! Only minorly so far, but I've only barely begun. Not enough I can go back to work yet (and I'm lucky -- I still have a job, even if I *am* on medical leave no pay for up to a year)... but we're working on it.
Long way of saying, I was burning the candle at both ends and the middle, and we always joked that I'd eventually run out of candle.
Well, once I finally got my Master's... yeah. There went the candle. Fatigue finally set in entirely, and it hasn't left me since. That was over a year ago.
The nice thing is it waxes and wanes... so some months, I've been able to go on vacations and other than the fact that I had to drop the embroidery guild and going out with friends, I can carry on a fairly normal life.
Make that could.
Past few months, I've fallen into a slump and other than a good day here and there, I'm pretty much able to get about 6-8 *functional* hours in a day. The rest of the time, I can maybe watch TV... lie down and think... hm... that's about it. Do you know how boring and frustrating that can get?
And those are on typical days. Oh, those hours are also in 2 clumps of 3-4 hours each.
Bad days, it can be a struggle just to get out of bed, take a shower, and get to the kitchen to eat.
So, needless to say, I'm wanting to find something that will make me feel better. To go from enough energy to work full time and go to school and still play games and such...to the brain stuttering when trying to write even at my best of times? Not fun. Very frustrating, to say the least.
And I don't even have it as bad as some do.
Current status? A friend pointed me to a specialist here in town who has put me on ATP shots. And... they're helping! Only minorly so far, but I've only barely begun. Not enough I can go back to work yet (and I'm lucky -- I still have a job, even if I *am* on medical leave no pay for up to a year)... but we're working on it.
Well, let's give this a try
I like to talk, I like to ramble, and I like to write. So, let's see how this goes. I'll give a full background later, but the short is that I have Chronic Fatigue, it's in a flare, and I'm now on unpaid medical leave because the insurance is being a PITA. I'll be heading out to one of many doctors very soon.
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