Been a while

Been a while since I've posted anything here, since I'm not sure that anyone actually reads it... (HINT! If you do, post a wave or something so I know I'm not wasting my time here? :D )

Things haven't been too bad, but in part that's because of my lowered expectations from myself.

Still waiting to hear from the insurance whether the appeal went through or not. They have 45 days from Nov 10th so it could be a while.

Did get my latest bloodwork back. The EPV was completely inactive now, and the ATP was up to around 25. So the shots are working!

Speaking of, I've learned how to give them to myself where it's not as painful. I'd found a correlation between left and right leg in that the left hurt more than the right.... found out why. Because I'm right handed, I'd be sitting back and more relaxed for the right side. Left side, I'd sit forward and be more tense. I figured it out when I was sitting forward (shot goes in the upper leg) on the right side one time and it was just as bad as the left. Tried sitting back on the left -- sure enough, not nearly as bad as it had been. Also hit a record this week... I think it only took me 5-10 minutes to actually *take* the shot from the time I picked it up... I've taken as much as 30 to psyche up for it before :p

In other news, let's see... DEFINITELY not ready to go back to work. One of my good friends who was a coworker (note the past tense) has taken a job in Virginia and just left this morning to go out there. I sat with her for a little last night to visit one more time before she disappeared, and even though I've been doing a lot better than a few months ago, when she started discussing work related stuff and things with the manager, etc, I had a hard time processing it again. Left after about 30 minutes, but part of that time I was dizzy. It's amazing how much stress / energy just SITTING and TALKING to a FRIEND can take. But, at least I made it by.

One of my best friends came over to mom's for Thanksgiving, too. It was good to see her again, and BOY was she a HUGE help (even if she doesn't think so). Interestingly, despite the fact that she's in a stressful situation and I'm trying to help a little (be a shoulder, all that), the several hours with her while helping mom fix Thanksgiving Dinner weren't as stressful as the time with my friend who is moving. Probably because I was both at mom's house and sitting in a comfortable place, and because I'm just more relaxed around her generally.

Anyway, I'm still needing the naps, and having trouble following some things (been trying to trace genealogy on mom's side, and I had to put that aside for a little bit), and I'm really beginning to think I may end up having to go on full disability, but my next appointment with the specialist is on Tuesday so I'll talk to her about it. After all, I'm wondering about this when my ATP number is still 25 and it needs to be closer to 40 before I can consider it.

In the meantime, I've now had three people tell me I look so much better as far as color, carriage, stress, etc goes than I was looking a few months ago.

"You're looking wonderful!" -- this when I still can't drive and still only have a typical stamina of about 8-12 hours during a full day? Though, really, I FEEL a lot better than I did several months ago.

At the moment, however, I feel tired after the stress of Thanksgiving. It was fun stress, but it was still stress and it takes me a few days to recover from that any more. So, off to bed.

Not too bad...

The crash I was expecting? Hit me starting last night and really took hold today.

But, on the plus side... even though I slept most of the day, I wasn't so bad I had to crawl up the stairs (which I've had to do sometimes) or struggle for the strength to feed the cats.

So it's a crash day, but I think one of the mildest full-crashes I've had. And I even still had the strength / mind to call the doc and get my latest info in to work.

And there it starts

Been tired, easily frustrated, etc today.

Yippee yay!

Okay, I know part of it is hormones, but...

Yesterday, I went almost a solid 12 hours without needing a nap! An *active* 12 hours, not just vegging in front of the TV, either. At least until approaching bedtime.

Then today... got up earlier than my body's natural clock, showered (and sometimes just *that* will wipe me out), went to Spring with mom (cute shopping village), shopped for about 2.5 hours (with a fair amount of walking. More than we've been doing at the grocery store), drove to the airport (15 minutes or so from Spring), picked up hubby, drove home (over an hour), got about an hour nap (this after almost 8 hours of activity), and still had enough energy to deal with trick or treaters until we ran out of candy (granted, only 20 minutes... it went *fast* this year) and *then* played City for several hours on a focus-intensive character.

It has been months since I've been able to do something like that, especially two days in a row. Oh, and no more leg cramping than my *old* "normal" while shopping!

I'm afraid to see how bad the energy crash is going to be when the hormones let up, but even *with* that influence, I'm still doing SO much better now than a few months ago. Definitely shows that the shots are helping.

That'd do it.

Picked up a virus somewhere, probably brought in by hubby. He's off at a conference right now, but just texted me that he has "the flu" as well (though whether he's been officially diagnosed as the flu or if he's using that term, I don't know). Well, I've been down sick since Tuesday. Tried to go to two followup appointments yesterday but I called and rescheduled them and instead went to the normal doctor to make sure what I had wasn't something like swine flu. Nope, "just" a virus, but still... drained, weak, dizzy, can't eat much without a stomach reaction of some sort...

On the plus side, I did laundry, took the trash out, got the mail, cleaned litterboxes, made several phone calls (including a stressful one to insurance) and did some general easy picking up of things around the house. Not a whole lot, any of it, and that was spread over the last 3 days. I know I'm getting into my cycle with hormones where I just can't sit still, and the weather is alternating between sleepy weather and "WANT OUTSIDE!!!" beautiful weather as the seasons change. Rather an odd thing to be both antsy and tired at once.

Heh, I'm down with a stomach bug and a virus and I still feel better than I sometimes do on a bad CFS day. Go figure.

Sending in stuff now to insurance to hopefully support the disability claim. I'd like to have disability pay until the specialist *does* release me to return to work, after all... Cross your fingers that this is enough.

On a totally unrelated note.... addicted to a new author. Well, he's not that new to the writing scene but an author I hadn't read before. Jim Butcher. He writes both the Dresden Files (private eye dealing in magic, the fight of white magic vs dark magic, good series) and the Codex Alera (Furies of Calderon, pure fantasy along the lines of some of my other favorite authors. Really reminds me of a cross between Mercedes Lackey and Raymond Feist with a touch of Katherine Kerr.). I really like his writing style. I'm on book 2 of Codex and once I finish that I'll read book 2 of Dresden. Dresden Files is written in first person with a dark theme but a lot of dry, sarcastic humor that makes me laugh. Codex Alera is purely fantasy in third person where the 'magic' comes from something akin to elementals, called 'Furies'. And Butcher writes very smoothly. He's one of the types of authors I like to study to improve my own writing.

Stress. It knocks a body out.

But, I'm recovering faster and faster from stress situations. Granted, we're talking hours faster instead of being better the next day.

I must remember... just because I'm feeling good right this second does not mean I'm better. This thing goes in cycles. Some days are good, some are bad, and I have yet to be able to go 8 hours without a nap. At least I'm sleeping more like 10-14 instead of 14-18 most of the time.

Still having a hard time facing some things, though, like dealing with insurance and work. Time to call in to them again. *sigh*

Backsliding

There is no question I'm backsliding. It'd be very depressing if I didn't know that it's a natural part of the cycle and we're still seeing overall improvement.

I don't know what's kicked this off... an infection I'm otherwise unaware of? Stress release for having finally given *myself* that ATP shot? Lifting of the stress that came with mom's furniture? She finally got that delivered so there's no more "we have to get this cleared before they come" stress. Did I over-do with the double-XP event in the game last weekend? Purely the weather change? All of the above?

Right now, though, I'm finding it questionable that I'll ever get back to work...

I'm not sure why...

...but I've settled into a denial phase. I keep trying to go without my afternoon nap, trying to get back to 10-12 hours of sleep a day instead of 14-18.

It keeps not working.

Should have known

As I get more used to the limits with CFS, I think more and more that things are just fine.

And then things like yesterday happen. Nothing major, just a busy day. Picked up my new glasses, helped mom with a couple of things at her place, came home and played on the computer a bit. But part of the day yesterday, my vision wouldn't focus.

Today, I was in bed until 8pm, other than about an hour to try to eat.

AKA...crash.

Well, not too bad the past few days

I've been staying home and just plain resting the past few days. I still think I had a mild cold late last week which was making things overall worse.

Still more of the same, except that I was able to sit and play City for several hours in a row finally again. This is more than just "yay, I can goof off", by the way. City of Heroes can take a fair bit of brain power and reaction time to play, depending on the character. I haven't been able to stay on the game for more than an hour or two in several weeks (months?). So to be able to play solidly for 3 hours again (well, other than bio breaks and walking around a bit and such... meaning, no nap) is a pretty good step in the right direction. It means I'm building back to the ability to be able to work again eventually (I hope).

Some of my friends are asking how much longer it'll be before the docs will let me go home. The answer is I don't know, but it won't be any less than early November. So I at least have almost another month. And there is absolutely no doubt that I'm doing better now from the rest and break.

Fibro isn't fun

Fibro often comes hand in hand with CFS. Meaning aching all over like you have the flu.

And that aspect is hitting me bigtime today. >.<

I want a good streak again.

Ugh

I was so proud of myself that yesterday I made it through the day without a nap. Even if it *was* because of insomnia...

I paid for it today. >.<

I finally have an analogy

The vision issues that we have with CFS... at least how they affect me? Well, I've been trying to describe this inability to focus on things even though they are physically in focus.

I finally have something I can compare it to.

Long distance vision when your eyes are dilated.

Where you have to try really hard to actually SEE what the eyes are seeing?

That's me on a foggy day.

Thankfully, I haven't had nearly as many of those as I used to ever since I started taking the ATP shots.

On an aside... Ugh. Insomnia. You know what it's like to be sleepy and tired but not able to sleep? At least with the Lunesta I can get 6-8 hours of actual *sleep* when I get into this cycle. It'll pass in a few days.

A well known equation.

Stress + CFS = Sleep

A little more info...

We got the results of my bloodwork again and things are moving in the right direction. ATP levels are going up, though only barely right now. Something like from 21.2 to 22. She said at first we tend to see minor changes, and then once the body reaches a certain threshold amount it'll skyrocket. But she doesn't think the numbers are good enough to go back to work yet. Impression she's giving though is that it *will* likely get that way (good enough, that is). In the meantime, I'm off for another 6 weeks.

Oh, and something else good... the EBV numbers that were high dropped by 100 points. That's a significant drop and would account for part of why I'm feeling better even if I have next to no stamina. I still only last about 4-6 hours on an average day before needing a 2-3 hour nap. And have me do something physical and the next day is still pretty much shot.

But, at least it's movement in the right direction.

Well i'm off for another 6 weeks. We are seeing an improvement in the blood work. And she's doing an appeal letter to the insurance.

Vent, vent, and again, vent.

Let's just leave it at "I hate insurance companies" and "I hate finances" and "Sorry I had the audacity to get sick with something that is not a mainstream illness and thus covered by everything in-network."

What a difference a night's sleep makes

In this case... a poor night's sleep.

I ran out of Lunesta night before last. That was my last one. Called it in and the pharmacy was out, so I spent last night without any.

Went right back to my old sleeping habits. Namely, taking an hour or so to fall asleep then waking up every few hours.

Ugh.

Looks like I jinxed myself

After how well things were going yesterday...

I couldn't sleep well last night, I was too tense, and then today I've been limp and tired.

I have really started noticing a correlation between how cold I am and how much energy I have, too. I don't mean cold reacting to the house temperature, but internal temperature. I keep sleeping until I'm nice and toasty warm and only then do I start feeling well.

Today has been a day of sleeping or vegging in front of the TV. I haven't felt like playing the computer, or stitching, or even coloring -- until now. Now I'll finally bring out the coloring.

How about an actual specific update?

Okay, so I ended up waxing poetic on that last one. :p

Let's see... today I gamed and slept. And made a couple of phone calls to doctors and to check in at work. Doesn't sound like much, but the phone calls can be significant. I did, however, sleep past my usual noon awakening. Slept until 1, was up until 5:30, slept/napped until 8:30.

Yesterday, slept until about 10:30. Rested until about 2. Went to mom's and watched some TV before cleaning for about 2 hours then watched more TV. Bones, in particular. Then came home and gamed until I went to bed, which was a little later than I should have. >.>

That's been the pattern the past couple of days. Sunday, slept and gamed but mostly slept. Saturday, helped mom.