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.

Just an update

Nothing special in this update really. I've found that it doesn't take much to make me happy or feel like I'm doing really well lately.

Mentally, I've been pretty much on the ball if I'm awake. I feel more like "myself" than I have in over a year. I don't have that cloud in the back of my head most of the time, when I'm at home.

Driving still isn't the best. Just from my house to mom's, a whole 15-30 minute drive, can really wear me out. But give me about 30 minutes' rest, and I'm back on the game again.

Not as many mental hiccups, I'm understanding and even producing my own scientific terms (as in recalling and knowing which term I want). I can follow my writing a lot better again, or TV shows with interesting plots (Bones, NCIS, etc). And with Bones, that's saying something with some of the terms they throw around.

The mental exam showed that fairly well, too. That mental test I did a few weeks ago? I did quite well on it -- the annoyingly well that I'd thought.

I'm still getting the headaches, that hasn't changed in all of a week. But the point that I just can't get past is how much better I'm thinking again despite all of this.

Physically, too, I'm doing a lot better than 2 months ago. The functional capacity test still applies... I mean I have the physical limits, and when I'm working on something like helping mom get ready for the furniture to be delivered (hey, she has 3 years worth of accumulation to go through. She hasn't been able to do this since she dislocated her shoulder 3 years ago)... sure, I have a limit of about 15-20 pounds of what I can lift and move at a time. But I *can* lift and move that. I only last about an hour, maybe an hour and a half before I need to stop for the day. And that's in chunks of anywhere from 5 to 15 minutes of working. But you can make a good dent in 15 minutes.

3 hours and dinner later, and I've got to head home.

And I'm considering that a really productive day.

I also noticed last night... I used to go to sleep with my hands clenched in fists. It was unconscious. That started about 5 years ago. Got on some anti-depressant/anxiety meds and that helped. But it still wasn't uncommon for me to go to sleep with some tension.

Recently, the past couple of weeks, I feel like I've really learned to relax and take it easy. To accept my limitations and I'm learning to work around them. To not be quite so depressed or frustrated with it. (Just wait until the hormones kick in again and see if this profound mood lasts :p )

I just hope that this upward trend will continue.

Happy dance!

Okay, it's minor things, but still. Happy dance!

My writing last night was back up to a level more like "normal". Yeah, I had to look some concepts up, but that's fine. It *has* been 10 years since I'd used those concepts.

Then my gaming last night and today.... back up to the point where it was arm ache, not mental fatigue, that drove me off. Well, last night's main run was bedtime that drove me offline, but again... "normal" :D

And then this afternoon.... I remembered some stuff mom and I were trying to remember for a while. Very clearly and in detail again.

Yeah, I know, chances are this is just a "high" just like I have "lows", but this "high" is higher than I've been in months!! It again supports that I'm seeing a generally upward trend.

Sometimes, you just gotta listen and give in

Most of the time, 2 or 3 advil at once is enough to manage the aches that are common with CFS and fibro.

But with my legs aching from yesterday's cramps, and a resulting headache... and 6 advil later I'm still noticing them... it's time to lie down. Again. That's where I've been most of the day today.

Definitely a day to stay home.

Mng.

That would be a sound of annoyance and such.

Woke up achy this morning.

Ow. This is annoying :p

So today, went to one of my team of doctors for a follow-up, then to the store.

One hour of talking, then doing grocery shopping for about an hour.

My legs were cramping by 3/4 of the way through the shopping. Shopping! Just at Target! I've been alternatingly stiff, sore and cramped since.

On the good side, after losing my train of thought at the dr I was able to recover it without a prompt. Haven't been able to do that in a bit.

Went down for a nap since I was so sore. Took about 2 hours. Now I'm honestly more fogged than when I laid down, but not as stiff and sore at least.

I hate this.

I hate this I hate this I hate this.

What did you do today?

Me?

Woke up.

Ate breakfast.

Drank a Boost.

Went back to bed.

Got up.

Spent 30 minutes on the computer.

Took a shower.

Went to dinner at the inlaws'.

Total time... 6 hours. Total.

I'm dragging. Badly.

I do not WANT to go to bed.

I want to write. I want to work on my character in City of Heroes.

Heck, I want to *clean the upstairs game room*.

And all I feel like doing is sitting here being a lump on the chair.

It's funny...for the first time, riding in the car to the inlaws' (a 45 minute ride or so) wasn't frustrating. Hubby doesn't talk in the car. He just doesn't. I'm a talkative person. I prefer to be visiting with someone. But this time, I was just relaxed and enjoying looking at the clouds.

One thing about chronic fatigue... I'm learning to slow down.

I just don't want to slow down *this much*.

Bleh. Going to the inlaws, no radio in the car, and only lasted 10 minutes on the phone. It's odd that being on the phone can be such strain.

Symptoms of the day

Yesterday, I helped mom upstairs.

Today, I'm definitely having memory and fatigue issues. It's not that I totally forget what I'm going to say, but that I'm slower in writing. This sentence, for instance is taking something like 10 minutes. And mom called and it took me too long to recognize who the ringer was for.

Nothing major, but listtle indicators that I should and will go back to bed.

Wow. Well, that's a surprise, but a good one

That functional capacity test that I thought went "annoyingly well"?

The only thing that was *really* good on it was my consistency. As in, they could tell that I was consistently trying to do as well as I could on the test.

Otherwise, almost everything came out either low or significantly low for someone my age and gender.

And that was on a medium day. Not a *good* day, but not as bad a day as today, either. Average, really.

That's "good" because it supports what we need for insurance.

Though, it did make me sound worse than I feel, though not worse than I *am*.

As for today... helped mom moving stuff around upstairs in her place again, trying to reorganize for her new bookcase. Though we both tried not to overdo, we still got a good amount done.

"Feeling normal"

Ahh. It's nice to have moments of "normal" now and again. Today mostly was a "flat" day, meaning I felt like a deflated balloon. But this evening, I've had a few minutes of feeling *normal*. I do wish it'd last all day.

Is this the real life, or is this just fantasy

One of my friends is sick and mentioned something about reality just being a construct to him now. I almost answered 'welcome to almost every day of my life'. That's really a good way of describing the fog that those of us with fibro and CFS get.

I'm having one of those foggy days today, pretty strong. I'm not surprised, after the stress of yesterday.

I can look at things and everything is clear, in focus... but the details don't necessarily register. And look away for a moment, and the details are gone.

I can be working on something -- like writing this blog, for instance -- and in the middle of a sentance have my entire train of thought come to a halt. This happens to a lot of people, even without CFS. But... have it happen every other sentance for anywhere from one second to 30.

That's what it's like to be tired in a brain fog.

And there's another aspect of daily life with CFS.... there was something else I was going to make sure I put on the blog, and I can't remember it. Ahh well, it'll come back eventually.

Oh, one thing I do remember. The past 2 weeks I've been typing at the couch more often than the computer. Almost exclusively, really. We've got the TV hooked up to the computer and I have a wireless mouse and keyboard. So I can sit back in comfort. I've been doing better.

Yesterday, I tried going back to the computer itself.

Here came the symptoms, so much worse again. Looking at the screen and not registering what I'm seeing. Being unable to read text because I just can't focus on it. Made trying out this new game rather difficult.

Now that I can think a little better...

Just for my own notes... the worst problem I had with CFS / Fibro was the ache and my legs and arms going tingly from poor circulation. They still ache.

Oof

Everything has a cost... in this case, the cost of the energy to go to the ER and such with hubby is a hard crash after.

On the plus side... it wasn't as bad as some of my energy crashes are. We'll see tomorrow.

Fun way to start the day...

/sarcasm

Woke up this morning to my husband saying "do you want to go to the emergency room with me?"

Um.. what?

2.5 hours later, he has Bell's Palsy. Which, luckily, is pretty much benign. Just very annoying.

On the plus side, I did fine fatigue-wise until time to drive home. Then, concentrating was all I needed to overcome it enough to drive.

Now, I'm fighting between nap need and still adrenaline-hyper. And of course my fibro's kicking in after the stress.

How many hours are there in a day?

Apparently, for me... 10-12.

I thought I was doing fairly well today. Then I did the math.

As usual, it's still only about 10-12 hours that I can function, and that *with* a nap in the middle.

*sigh*

Perplexing pulse

I've been taking my pulse periodically through the day the past few days just to see what sort of pattern (if any) there is. I know it's normal for pulse rate to vary through the day, I just think some of the behavior of my pulse rate (and others with CFS who have done the same thing) is a bit bizarre.

For example... I forgot to take it when I first woke up this morning before getting up. But, after getting up, going to the bathroom, walking to the kitchen, getting a frozen breakfast from the freezer, getting a paper plate, putting the food on the paper plate, and putting it in the microwave... my pulse was 116.

My target heart rate for exercise is supposed to be about 111-160. I hit that with *normal* morning activity. No caffeine, nothing to drink, I wasn't stressed...

And I had no trouble at all finding a pulse to measure.

Now, though.... I'm feeling a fatigue slump coming on -- my usual afternoon thing. You'd think I don't *have* a pulse, with how hard it is for me to find it right now. After quite a bit of hunting, I found it and it's 80. This is *with* caffeine, having eaten, but granted I've been sitting on the couch relaxing for a bit.

My resting rate seems to be between 75 and 82.

Trapped

Boy do I feel trapped

What I want right now is to get away. Escape. Go to Oregon, Washington State, DC, Maine, North Carolina.....

Just get in the car and *GO* for 3 weeks.

Go at a slow pace, yes. 5-8 hours a day. But you can see a lot in that time, you know?

I look outside here... I see houses. Freeway. Construction. Trees.

I want to look outside and see mountains, ocean, scenic lakes... heck, even scenic redrock desert.

I want to go sit in a diamond or crystal "mine" activity (ie: Crater of Diamonds) and such, and go rock hunting. Know what we have down here to hunt? Mud. Mud. More mud. Clay. And lots of fire ants.

I want to escape the dreams of work that have been plaguing me all week. I want to escape the doctor's visits. The feeling of inability to do things. Of being trapped...

*sigh*

I know from past experience that taking a 2-week trip can make a huge difference for me. The escape from *anything* stressful in the normal way, the production of adrenaline, even the exercise with a *purpose* can do me a lot of good.

It doesn't last, but it can do me a lot of good.

Phew. I do hate fatigue.

Okay, so yesterday I took the functional capacity exam. 3-3.5 hours in the office, of which about an hour and a half was doing exercises. Maybe a little more. After questionnaires, and interview, he had me walk on a treadmill until I couldn't go any farther. To the point of being afraid of falling off type. I only made 5 minutes. That's pathetic. Put me on a mountain trail or at the Disney parks and I'll go farther :p But then, on vacation adrenaline will kick in and I'll pay for it later. *sigh*

Anyway, after that we did the lifting stuff, and pushing, etc. Then grips. Then bending (that one was easy. The pose he wanted was one I do all the time to stretch/relax my back. Then squats. I got 16 before my legs would not lift me again and I had to use my arms.

I felt a lot better after the test, of all things. More alert and awake. Yay endorphins or whatever. But those wore off and the "headband" of the headache came back within 30 minutes.

Went for lunch after that (yummy Indian food. Found a great buffet) then about fifteen minutes at the book store (I was looking for more mandalas to color. Very relaxing), and by the time we got to mom's house, I was wiped out.

Slept *HARD* for about 2.5 hours. Only got up after that so my mom's neighbor (a nurse) could give me my shot.

Then watched a movie, hubby picked me up and brought me home, I ate dinner... then was in bed at 9:30.

My natural biorhythms are more like 10:30 am - 2am. With naps. Going to bed at 9:30 when I'd already had one hurt. :p I wanted to write and do embroidery or watch TV, but I couldn't stay awake. :(

And then I slept straight through (other than bathroom a couple of times) until 10:30 am.

Over 12 hours.

And even then, I only got up because I *really* needed to get something to eat and drink. And then it was right back to bed again for another 5 hours. Slept just as hard.

Some people may say this is just over-sleeping or something, but no. I couldn't focus on the TV screen or the computer screen or embroidery or anything really when I was eating dinner.

I even went back for *another* nap, only it turned into more like meditation than a nap since I didn't quite sleep. And that was only for about an hour and a half.

Got up and felt great... for all of 2 hours. And now, the glaze or fog is starting to settle in *again*.

And on a I guess you'd say more metaphysical note... I've been getting interested in some of the "energy system" stuff of Chinese medicine. You know, chakra points and meridians and such that tie to acupressure and acupuncture. After several different martial arts and yoga classes, I can sorta "see" (hard to describe) the "ball of energy" at the chakras. It's a pure visualization exercise. Well, last week when I was helping mom upstairs, the chakras were strong. Like little miniature suns. The past couple of days though, it's so, so much weaker.

Funny thing though... I can still remember that list of 15 words that I had to do for that neuropsych exam on Thursday that I tried a "memory palace" technique. It works :D

Also something to note... I was looking for a picture for my facebook profile. Went as far back as 3 years ago. You can *see* the change in my energy levels just in pictures of me. It's a very noticable change from the England trip 3 years ago to the one 2 years ago to the trip last fall then my WDW trip this spring and a Cali trip. Very, very noticeable difference.

Off to a more fatigued start today. Hopefully will result in a more accurate test.

So, did the first of the tests today

First test down -- the neuropsych. And I think I did annoyingly well on it >.> The problem is that I find the memory games and logic puzzles in that eval -fun-. Yes, I'm nerdy. The most notable "negative" really was the level of headache I got from the thing. By the end of 2 hours I was up to 3 advil. I pointed that out to the doc and she said thank you, that -is- very significant. I really like this neuropsych. She is the sweetest lady.

Tomorrow is the test I *don't* want to do. The functional capacity one.

So far a more typical morning. Good. It will make for a more realistic test.

I'm trying not to get too hopeful...

...but I had another really good day today. Made it to the museum and through almost 3 hours mostly on our feet at the museum. By then I was physically tired, but not so much mentally. I was even able to drive home. Nice to be able to drive again.

Such good intentions...

It's dramatic, how much just an hour can make.

Woke up this morning feeling good. Mentally alert, physically fine, no fog...

Ate breakfast, no problem.

Called the doctor to schedule a functional capacity exam (one of the two tests the insurance requires)... just trying to explain to him what I need and such, with the distraction of call waiting as mom called at the same time I was talking to him, then a 20 minute conversation with mom...

Now I'm drained again.

In this case, it's the stress. *sigh*