Wise Words from Rocky Balboa

‎"It's not about how hard you make the punches, it's how many punches you can take and still move forward." - Rocky Balboa


This is how I feel today:



but so far I'm still moving forward.

Infinite Daze

Just read this article on BBC News and it might just give new meaning to my blog title. The article is on some research looking into the use of cannabis as a pain medication. Although it was a carefully controlled study I still had images of Cheech and Chong going through my head.

While the drug offers only mild pain relief without the psychotropic effects due to the lower dosages, it had some beneficial side effects. It actually reduced anxiety, depression and sleep disturbances. Those of you who live with Fibro know that these all go hand in hand. To find one drug that has minimal side effects with multiple benefits would be a godsend. I just wonder how long it is going to be before they get done with the clinical trials and bring it to market. Right now they are trying to figure out if it should be inhaled or swallowed in pill form.

My Labels Have All Fallen Off

I was reading another blog and came across this saying "Labels are for jars and not people." While in an ideal world this should be true in the real world it isn't. We all have labels. Back in college I came up with this idea that each of my labels was a single facet of a lovely diamond. We travel from group to group and present the appropriately labeled facet to its members: daughter, sister, worker, student, activist, gardener, skater. This is how we make connections with the members. It is a short hand for us to understand each other. We share our shared experiences. Then once in a while a true friend comes along and we get to share a few extra facets with them: painter, writer, cat lover. No one EVER gets to see all of our facets. Sometimes it is because we don't show them and other times the viewer literally can't see what is presented before them. That is when we say "that person just doesn't get me".

I have been through label changes, both additions and losses. I graduated from college, married and had a child. Each event drastically changed the labels on my facets. I lost some such as 'moving alone through the world' and 'living in a single sex dorm' and gained others such as 'wife of a wonderful husband' and 'mother of a weird smart kid'.

This illness though has suddenly stripped ALL of my labels off. I have never had an experience like this before. I can't work. I can't take care of the house or others. Often I can't even think straight. I am left wondering how I am going to fill up my days? How can I intellectually challenge myself when I can't even read? How can I be a wife or mother when I can't cook or play taximom? Will I have any friends left if I keep canceling on them because I don't feel well?

The interesting thing is that now that the labels are all gone I can be very selective about which ones get stuck back on. Do I want to return to my old job or train for a new one? Do I want to be a different wife, mother, sister, daughter? Naked, I am left with nothing but questions and a bottomless pile of labels to sort through. I am hoping that I come up with a better selection than before.

A Good Evening

Well, this is the happiest I've been for a while. Not sure exactly what it is maybe too much ice cream/sugar? I slept a lot today. Got to hang out in the hammock during 75F sunny weather watching a white butterfly attached to the underside of a maple leaf. Got to watch the clouds melt for a while. Watched some very funny videos on my new favorite web site, My Food Looks Funny. Eric Idle was on Craig Fergeson. My wanky cat decided it wanted lots of cuddles (very unusual for her).I had a nice turkey burger dinner ( the recipie is on my food blog). I spent some quality time with my husband. I think he is finally starting to "get" my illness. He has been so much more tolerant of me being sick these last few weeks. I have just had a nice day and a good evening. I even feel somewhat normal. My brain is half working and I'm not dropping dead from exhaustion. All in all not a bad day.

The Substitute Wife

There is an important wedding coming up. Both I and my husband have known the groom and bride for many years and are even friendly with the groom's parents. We both want to go but it is a two hour drive away. We need to come to a decision regarding the wedding which of course I can't really do until the day of. I have no idea if I'll be okay or stuck in bed. So here is what my husband of twenty years just proposed to me:

He: "What if I took someone else?"
Me: "Girl or guy?"
He: "Girl."
Me: "No. You're not taking a substitute wife."
He, appalled: "She wouldn't be a substitute just someone I know that I can sit with at dinner and talk with. I really want to go to this wedding."
Me equally appalled: "That is a substitute wife."
He: "I won't be kissing her or anything like that."
Me: "Doesn't matter. Taking a girl to a wedding to keep you company is what a wife does. Therefore you are taking a substitute wife."

It kept going on from there. Why do guys not get this? I am barely tolerating him going out and doing stuff without me as it is. I don't mind when he goes out with the guys. I can deal when he goes away for the weekend. But I draw the line at taking a lady friend to a wedding. It just isn't right. Weddings are such a couples thing. This whole episode worries me. Is he going to start looking for a substitute wife for real? He keeps telling me that I'm broken and he has never been one to sit around the house much. He misses my company. I often wonder how long he will tolerate me now that I'm broken. One of his friends divorced his wife after she became chronically ill and I'm scared that will happen to me. I think he might stay. He is very serious about wedding vows and doesn't take them lightly so he might stick around. But this whole substitute wife thing scares me.

For Fun

A woman was sitting at a bar enjoying an after work cocktail with her girlfriends when Steven, a tall, exceptionally handsome, extremely sexy, middle-aged man entered. He was so striking that the woman could not take her eyes off him.

This seasoned yet playful heartthrob noticed her overly attentive stare and walked directly toward her, as any man would. Before she could offer her apologies for staring so rudely, he leaned over and whispered to her, "I'll do anything, absolutely anything, that you want me to do, no matter how kinky, for $20.00... on one condition..."
Flabbergasted but intrigued, the woman asked what the condition was. The man replied, "You have to tell me what you want me to do in just three words."

The woman considered his proposition for a moment, and then slowly removed a $20 bill from her purse, which she pressed into the man's hand along with her address. She looked deeply and passionately into his eyes, barely concealing her anticipation and excitement, and slowly and meaningfully said....



"Clean my house."

Of Blogs

I have actually been blogging for several years now. I orginally started writing when I returned to the ice as an adult figure skater. Yes, 40+ years old learning how to jump and spin. My family and friends all wanted regular updates on my progress and I found myself spending hours writing the same email over and over again. So I decided that it was much less time consuming if I started writing of my exploits in a blog.

I started in LiveJournal. After a year I wanted to add videos of my tests but I had to pay for that service so I switched to Blogspot. Now I can add all the pictures and video I want. Blogspot was fine for my skating blog because it was just a chronical of my skating. Now that I am blogging on CFIDS and my own illness I am finding that I want to collect things: videos, papers, links, images. This blog is turning into an odd combination of scrapbook and file cabinet. As such, I have again run up against the blog's limitations so I have been looking at Wordpress. The trouble is that I have bad brain fog on most days. Because Wordpress is flexible it is also is complicated. I can't even follow the instructions for it. I know a lot of CFIDS/Fibro bloggers out there use Wordpress so if you have any suggestions or comments on blog design and design software please let me know.

Awesome Blog Find

I just found this fascinating blog by a doctor in NM that has CFIDS and tested positive for XMRV. After testing positive for XMRV, she found a physician that prescribed her the AIDS antiviral drugs. The blog is about her reactions, recovery, and CFIDS/XMRV research. I have only just started reading it and I am at the beginning of her blog but I wanted to post this link since I think the information is of utmost importance to those of us who are suffering.

X Rx

Pooped and Bored

What else is new? I didn't start out this way this morning. I felt pretty good when I got up. As a result I tried cleaning up a little bit. Nothing major just putting a few things away. When I got tired I sat down on the couch and bingo the cleaning lady showed up. Crap. I need a shower because I have to go see my chiropractor and they have to clean the bathrooms. "Just 15 mintues" I told her and I popped in hubby's shower cube to top and tail it as my mom says (i.e. only clean the bits that need it). Throw on some clothes and I'm done but now I really need to lie down but all I can do is sit because the cleaning ladies are int he middle of making the beds. 20 mintues later we leave for the doctor's office. We go there and spend an hour chatting. He fixes me. He fixes hubby. We talk some more and finally leave. The chiropractor is worried about me and is going to call a couple of people he knows for consults.

On the way home we decide to go to the market for dinner supplies. I go in with one bag for three items. I'm lagging way behind hubby at this point. I'm dragging and know that I should be prone on a couch or bed. I end up with over a half dozen bags of stuff, mostly picked up by hubby. Kid volunteers to cook but I have to supervise so I am still upright barely balancing on a bar stool next to the stove giving him directions. I need to close my eyes. I'm dizzy and crashing hard. We get to the point where everything just needs to sit there and cook for ten mintues and I finally get to lie down on the couch. I'm wrapped up in blankets cuz now I'm freezing as well as dizzy and tired. Hubby checks on me. I send him into the kitchen to check on food and kid. Fifteen minutes later I have to get up again to eat. The food was excellent. The kid did a fantastic job. Hubby looks at me and tells me I look like hell. No shit. I feel like hell. After the family dinner chat and lots of compliments to the kid I'm mercifully back on the couch wrapped in my fleece bathrobe. I sleep for an hour with my cat. This sucks.

Secret Worlds from xkcd.com

Talking to the Boss

It was bound to happen. I'm amazed that I lasted this long without the dreaded "call from the boss". I work for a huge company and for personal reasons I have been mostly dealing with my abscence through the HR department. He finally called today. I was hoping to talk with him privately but no I was on conference call with him and one of his minions (for the record I actually like both of them: they are nice and reasonable to deal with and I'm not just saying that cuz this is a public blog). And to boot I have a bad case of brain fog today. This is going to be tons o' fun.

I have been out of work almost four entire months. I did manage to work on and off for a week and half right of the begining of this fiasco so maybe I've only been out of work for a total of three months at this point but that is neither here nor there. Anyway, I had already anticipated this so it wasn't a surprise to me when he announced that he was moving me out of my office and into a lab with a desk in it. Space was at a premium when I left and I figured that since I wasn't there actively working in and utilizing my office space (and guarding it with my life) that they would eventually boot me out. I'm not surprised. I'm don't blame them. Yes, I am annoyed but what can I do? They are in charge and I am useless to them for the indefinate future. A waste of space. I'm not high enough up the food chain for them to want to keep me happy. I am an annoyance at best.

I'm not looking forward to going back to a pile of boxes covered in dust in the corner of a crowded lab. Probably with tons of crap piled on top that doesn't belong to me. Any empty horizontal space at my work gets covered in stuff within a week of the horizontal space appearing. I don't work with a bunch of neatniks. I just hope that we don't have another roof leak while my stuff is tucked in a corner somewhere or I'll be going back to black and yellow mold.

The thing I'm going to miss the most is my chaulk board. Yes, that's right an old school, black, honest to God, chaulk board. It had been left behind when I was moved into an old timers office. My guess is that it was part of the original office furniture purchased for this place 60 years ago. It had the old company logo on it and the old style property tags on it. I managed to hang on to it through five or six office moves and I just got it out of storage when I moved back in to a real office this past year. Since I am moving into an optics lab they can't deal with the dust and I have to give it up. I hate white boards. I hate the smell of the markers. The smell of the erasing fluid makes me ill. Hubby tells me they got rid of blackboards because of allergies. I can't imagine that the volatile organics coming out of the whiteboard markers and eraser fluid is good for you. Myself, I prefer good old chaulk. I'll take a little calcium dust over inhaling those chemicals anytime.

That was the main reason for his call. He then remembered that I needed to do the annual "what I did at work this past year" report. The place is too big for the bosses to keep track of us peons. I tried to explain that my memory was shot at best and I didn't have notes, files, emails etc to crib from. He told me to the best I could and gave me an entire week to get it together.

I started this today and found I can't recall people's names (these are people I worked with for months) or project names (some of these are huge comm satallites) never mind all the things I did on the projects. My brain is shot to hell. Right now I can't even follow a trashy romance novel never mind reading erudite engineering papers on optical communication systems. I am useless to them. Good thing my ego isn't totally wrapped up in the job or my identity as an engineer. I haven't been ill long enough to put together a new identity. I'm fighting taking on the "Hi I'm Baffled and I'm chronically ill" thing. I am slowly letting go of my competitive skater identity. I even posted a "last entry" in my skating blog this past week. The question is what am I going to become? What am I going to be? How am I going to identify myself? Who am I?

Progress??

Just went to my primary today. I wrote down all my sypmtoms just so that he had a record of them and so I wouldn't forget anything. I have pretty bad brain fog today so it was the best tactic. We discussed my virologist's diagnosis of mono vs my symptom list. Since I now am having trouble with my jaw joints and nerve in my face to the point of not being able to chew and I'm scratching my nose constantly, he decided that I probably didn't have mono and it was a good idea to send me to see a CFS specialist. I think the virologist gave me that diagnosis since he doesn't believe in CFS. I asked him some questions about it and he totally brushed it off as a legitimate diagnosis. Thank goodness my primary believes it exists. He is going to do some research and find a really good CFS doctor in my area and get me a referal. Yeah!! I can't believe I'm four months into this and am still sick. Ugh. I wish I never had the TB tests. Those halted my progress towards wellness. At least I am plataued right now and not getting worse.

WTF?

The Quest for the CFS Marker

The main reason I don't have a diganosis yet is that there is no marker for CFS. To obtain this diagnosis you have to have a convergence of paranormal events: a doc that believes this is a legitimate disease, the abscence of other diseases and meet the CDC criteria. So far I've got two out of three. Right now I've only been sick just shy of four months instead of the CDC required six.

The Whittemore Peterson Institute did a study that linked CFS with XMRV, a weird retrovirus and today a study was published by the NIH/FDA that backed this study up. This has several implications: they are on the right track, XMRV might be a cause/trigger, it may be useful as a marker. I now have some hope that I might have legitimacy, a diagnosis and possibly a cure (or at least symptom relief/control) within my lifetime. How cool is that??

The Magpie

I want to apologize. I hope no one gets upset at me. I collect things. I'm like the Magpie that steals shiny things and lines his nest with them. In my case, I go out into the blogsphere and when I find cool poems, quotes and videos I repost them here. I try to give credit where credit is due but my brain is often muddled and I can't locate where I found something I liked. After all this is why I cut and pasted it in the first place; I knew I didn't have a snowballs chance in hell of finding it again and it was really really shiny. Anyway, if you see something that is from your blog and you want credit just list the link in the comments section. I don't mean to offend, I just thought what you posted was neat and wanted to make sure I could find it again by having it in my nest. Please consider it a compliment :-)

My Barn is Missing

"the barn burned down and now I can see the moon" -Massahide

I am doing better moodwise today. I woke up with this going through my head:




It is raining outside for the first time in what seems like months. I can hear my plants' collective sigh of relief.

Sad Saturday

After doing my excellent imitation of a sofa sloth, I am finally up and about. I ate breakfast at 2pm since I'm doing my free range sleeping thing again. I spent the night on the couch instead of going to bed. Hubby was snoring and I was restless and tired so out to the living room I went to watch Craig Fergeson. I like ending my day with a good laugh and he always makes me laugh.

Sleeping on the couch also meant no CPAP machine. Yeah! (I HATE that thing) I put in my dental appliance, took a half a percoset to calm all the aches and pains down and when Craig was done put on my Tibetan Healing Bells CD (in the half dark I accidentally put it on repeat which turned out to be a good thing). I was asleep in five minutes which is quite unusual for me. I slept well. Every time I woke in the night I was lulled back to sleep by the bells.

Although I had the best night's sleep in days and wasn't woken up by the neighbor's dog barking, I was down. Despair is starting to set in. I stared at the walls wondering if I should bother getting up. I felt well rested for a change but couldn't get off the couch. I am housebound. I bump around the four walls with little that I can do. I could clean. The house is a dump but I don't want to spend what precious little energy I have doing something I hate. My mind starts listing my options and none of them appeal to me. I am starting to worry that it will be years before I am better if ever. It scares me. What am I going to do with my time? Study Buddhism? Study art? Paint? Sew? Write? It depresses me that I can't skate and have no hope of skating for months. What in hell am I going to do?

Anyway, I found this on a blog from another chronically ill lady and it appealed to me.

Another Poem: Untitled

I still am
despite this
with this
fighting this
under this

molded
burned
touched
taught
humbled by this

uninvited illness
engraved upon my life
not yet named
not yet understood

I still am
here
loving
laughing
feeling
thinking
creating
dreaming
enduring

I still am
a soul born into an
awesome, mysterious
wonderful and sometimes
cruel and unjust world

Despite this
with this
under this
fighting this
humbled by this

I still am
and I will not
give up

by, Kerry Ryan-Kuhn (published in CFIDS Chronicle-Winter 2003)

Cymbalta for Fibro?

Just read this article on Yahoo News

Not sure I like the idea. I no longer trust drug companies. I went through a bout of major depression about ten years ago. Although I told the doc I did well with Prozac he tried me on every new drug on the market first. I felt like a human guinea pig. Cymbalta was one of the drugs I tried. Of course now I don't remember what side effects made me stop taking it but the whole ordeal was horrible. Each drug had an intolerable side effect. One would give me muscle weakness, another thoughts of killing my relatives, a third would make me loose time (blackout?). After several months of this I stopped all meds. I couldn't take the experiment anymore. I swear the guy was looking for something he could get a kickback from a drug company for prescribing. Why would he put me through this when an older drug had a proven track record for me personally?? Why torture me like that when I was in the middle of a depressive episode?

It makes me nervous that I might end up back on this stuff for my new illness. I can just see this illness turning me into a guinea pig all over again.

It's Junk Food Week

Yeah, yeah, yeah. I'm supposed to eat healthy. If I eat properly I'll help my body heal. Yadda, yadda, yadda. What do you think I was doing when I got sick?? I was in the middle of my first figure skating competitive season. I was in the best shape of the last ten years. I was either in the gym or on the ice six days a week. I eat organic whole foods. I don't eat wheat (allergy) or cows (by choice). I eat lots of fresh fruits and vegetables. Yes, I was actually tracking this in my training log, five servings a day. My doc did an extensive survey of my dietary habits as part of his new CEO style annual physical. The only two comments he had was that I already ate very well and to try to cut down on the number of times I ate out a week (hazards of a busy training schedule). The first month I was ill I ate a super healthy diet, mostly because I was having trouble tolerating food at all. So, lots of organic fresh fruit, vegetables, brown rice, chicken, salmon and tofu.

Guess what? While I did improve a little I didn't get better. What did happen? Things changed. I have a slightly different symptom set now but the fatigue is still here and I am now four months into this. I have now lost almost all of the muscle mass that took so long to build up and then some extra is missing to boot. I am now deconditioned to the point where my muscles can no longer keep my vertebrae in place so my back now aches constantly. I can throw my back out with the simple act of sneezing. I am gaining fat even though I am down to two small meals a day with fruit and nuts substituting for my third meal. I'm eating way less than I used to and I've been pretty good about staying away from any type of junk food. Well, since my body just gains fat if I'm not exercising (this is the way my body works: diet alone has NEVER worked for me, I HAVE to exercise to loose or maintain weight) although I am now at a lower scale weight I have gone up a pant size or two. I am going to have to buy chubby pants for this winter since my old jeans no longer fit.

So F it, I'm eating junk food this week. I have already enjoyed several rounds of chocolate ice cream. I am in the middle of a bag of Dove chocolate and a bag of wonderful GF almond cookies (more on those in a later blog). I just bought some Udi's GF lemon muffins. And, I had a Whole Foods chocolate cupcake yesterday and am going to have another one today (not GF but they don't seem to bother me-lots of air in the batter??).

Am I stuffing my feelings? Do I want to be sick? Do I want to be gaining fat and loosing muscle? Do I want to be stuck in the house day after day? What do you think? (that's rhetorical-don't feel obligated to answer in the comments section-I'm in the middle of a rant here) I can't skate. I can't swim. I can't garden. I can't cook. I can't travel. I can't have dinner with friends. But I can eat so SCREW it. I'm enjoying eating my forbidden foods. I don't care what is going on in my head. I love the taste of chocolate. I love the feel of ice cream in my mouth. I'm enjoying almond cookies, lemon muffins and chocolate cupcakes. Health food be damned.

Woman Warrior by Maria Jastrzebska

Lying propped up
on a large cushion
in my woolly pink
dressing gown
is probably not
how you imagined her.

To be honest
I didn't either.
I rather fancied myself
dancing over hilltops
swirling swords in the air
all yells and flying kicks
or even leading
a mass protest rally
at least strutting my stuff
in trendy denim or leather
anything but like this.

Nevertheless
here I am
a warrior woman
in my pink dressing gown
dozing
or staring into space
watching the trees
through my window.
Imperceptibly
at first
ever so slowly
I am fighting back.

With every act of kindness
towards myself
every refusal
to blame
or despise myself
I strike back
against the men
in grey suits
who don't think
I'm cost effective
the ones in white coats
who don't even believe
I exist
all those too busy
or in too much of a hurry
to notice who I am.

From behind
my drooping eyelids
I am watching
with the stillness
of a lizard or snake.

I have learned
the langour
and stealth
of a tiger
lying in wait
ready to pounce.

So next time
you come across
a woman like me
tired looking
in a pink dressing gown
just because
I'm lying low
don't imagine
I take anything
lying down.
Watch out
I have never been
as slow
or as deadly before.

What is Wrong With This Picture?

I get tired easily. Really easily. Like nausea, dizzy, shaky, almost pass out tired. I'm housebound cuz of it.

So yesterday I had a chiro appointment and my kid offered to drive me there. Yeah kid! Hubby is home painting the house. Once he gets going on something he hates stopping for anything. On the way to the doctor my kid gets a message on his cell, "pick up paint from Home Depot, 3 cans, see John, call when on way". Ok. This shouldn't be too bad: stop at pharmacy and get some girl supplies, stop at Depot and pick up three cans of already mixed paint.

I get my adjustment. My kid gets his adjustment (so much for the altruism: he needed an adjustment: boo). We go out to the car and I call hubby. He asks me to stop in the grocery store to purchase dinner after the stop at the Depot for the paint. Ugh. This is getting long but still doable. Quick trip in the Depot and quick trip in the market. Off we go.

On the way to the Depot we run out of gas. Great. We stop in a gas station and kid fills it up. Due to the heavy traffic volume and the fact the kid is still learning how to drive we have to head about a half a mile in the wrong direction, find a place to turn around and then head to the Depot again. We finally get there and there is a line. The lady at the counter is having a huge debate with the one and only guy behind the counter regarding paint color. Great. I park myself and the carriage next to the counter to hold my place in line. There is no where to sit. Bugger. The first lady leaves and the second lady wants a simple quart of paint and has her paint chip in hand. No problem. He turns to me and I tell him I'm here to pick up three cans of premixed paint. Now it begins. Because husband didn't pay for the paint over the phone they never mixed it up. The guy behind the counter is by himself and can't do more than one order at a time or he gets confused (which is ok since he told us this outright and I'm cool with that) so I wait. He mixes lady #1 paint and then does lady #2 and then starts mine. Luckily I was watching. The machine dumped tons and I mean tons of red colorant in the tin. My house is green. I asked the guy if that was my paint. He tells me yes. I told him that I thought it was the wrong color. He stops prepping the next tin and decided to mix the first tin to see what color the paint comes out. Rust. I look at him and tell him that isn't the color of my house. He asks me if my hubby decided on a different color. No. I need green. Oh and BTW John has gone home. This is Tom and knows nothing about the order. Time to call hubby to get the mix numbers off the old paint tin. My cell doesn't work. The kid's cell doesn't work. The guy hands me his phone. I call the wrong number. The guy walks off to help another customer. I finally get hubby on the phone and get all the numbers. The guy talks to him as well. We hang up and he finally mixes up a new batch that comes out the right color. Now for the other two tins. Yeah. We finally have three tins of green paint. Off we go to the check out counter. This is where someone races me to the counter to get in front of me. Ok he only has one item. Au contraire. Turns out he has mom and dad with him who finally come hobbling over each laden down with stuff. I only have three items. I'm getting tired and the cashier wants to know if the guy wants an extended warranty for the power tool dad just plopped on the counter. My back and foot hurt cuz I've been standing on a cement floor waiting around. I could have been through the check out line before this guy got all of his junk even assembled but he had to cut me in line. I am now leaning on the crap at the check out lane hoping the display won't shift under my weight. It has now been an entire hour and we still have to go shopping. Bugger.

I'm tiring but still ok. My kid hasn't been grocery shopping with me for while and I haven't been in a week so I decide to stock up. The trip itself is pleasant enough. People do try to cut me off since I am limping and walking too slow for them but in general I'm ok and we get lots of food and supplies.

We get home and I'm dragging. I know I'm going to completely crash soon. I need to get the chicken in the marinade for dinner before I sit down cuz if I sit now I won't get up. Turns out I have to scrub the pans before I can use them. Whoever did the dishes did a crappy job cleaning the pans. The dinner is simple enough. Rice in a rice cooker, marinade chicken for grill, and green beans but now I have to do dishes before I can even start dinner. I prep everything and I'm now at my limit. I MUST lie down. I'm beyond sitting at this point. I have to lie down and not move a muscle. I plop on the couch, turn on the TV, put on the news, get the sound just right and close my eyes. I notice I keep drifting off cuz I miss the end of the weather report and miss bits and pieces of other reports. As they say in England "I'm completely fagged."

I keep checking in with the noises my husband is making trying to figure out when he has put the meat on the grill so I can start the green beans. All I hear is the paint sprayer going. Apparently I slept through the noises of him coming indoors (loud), picking up the chicken (next room) and going back outside (loud). Suddenly, out of the blue, my husband calls "Dinner". I climb off the couch and hobble into the kitchen using chairs, walls etc to hold me up. He takes one look at me and says "doesn't look like you're going to the car show with me tonight." I snapped. I was so angry. I went off on him "I just spent two hours going around stores and then I prepped dinner. How do you expect me to go out?" "Woh, woh. Don't bark at me. Go sit down." We had a quiet dinner of perfectly cooked chicken and rice and warm very crunchy green beans. He went to the car show alone. I was parked on the couch all night drifting in and out of sleep. I didn't even recover enough to take a shower later which is what I had planned. So much for going out with hubby for the evening.

So why am I angry? I can only do two maybe three things in a day. This means that typically hubby has to run errands and pick up meat for dinner. I try to go shopping once a week but I never buy meat cuz hubby decides what he wants to eat day of. Hence I can't plan food in advance. I have thrown out so much meat that I don't buy it ahead of time anymore. Since I buy only organic meats it is very expensive stuff to chuck in the garbage. Having him pick up meat, while reasonable to me, makes hubby have daily hissy fits. He HATES going out to buy meat for dinner, even if it is on his way home from his office. He HATES it and he lets me know every single day that he HATES it. I just have to suck up his anger. Me saying anything just makes things worse. Right around 4pm my anxiety level goes through the roof cuz I'm waiting for the dreaded "what's for dinner" question. I must say it is one of the more moronic dances that my husband and I do in our marriage but I haven't found a way to stop it yet.

Enough of him, back to me: hubby had asked me to accompany him to the car show, I liked the idea of getting out of the house for a change, I ended up running his errands for him, going on an unplanned shopping trip at his request and making dinner for him and then he makes that bonehead comment and doesn't understand why I lost it. Instead of getting a thank you for running his errands and making him dinner he gives me shit about being run down. Yeah. I'm angry. I'm still angry. Not sure I've figured out how to take care of it. He went on a fishing trip today. He seems to be escaping from the house a lot lately. I get left behind cuz I'm broken. Yup, I'm angry.

Free Range Sleeping

It's my new sport. I've substituted competitive figure skating for free range sleeping.

Okay, I need to explain a little more. I was reading my new ebook on sleeping, 40 Sleeping Hacks, and ran across the phrase 'free range sleeping' and thought "hey, that is what I do". It is sort of like being a free range chicken. I wander around my house and yard and sleep where ever I happen to get tired. I have slept on every couch in the house, every bed except my son's (too icky), the hammock, several chairs and of course the pool floatie. I often mix it up and spend a few hours on the couch and then move to the bed or the reverse if the neighbor's dog starts up.

Since I am in 'listen to your body' mode, I sleep when I am tired whether that is 4am or 4pm. Then I wake up when I am done. No alarm clocks. The sleeps can be as short as ten minutes or as long as 14 hours. My sleep doc would pitch a fit that I'm not following the 'good sleep hygiene' practices laid out by the National Sleep Foundation. But this is my reasoning: the docs have no idea what is wrong with me other than an invasion of my body by some virus; they don't know how to fix me; the mighty battle continues to rage on with no end in sight; so I think my body knows what it needs more than the docs have a clue; so if it wants sleep that is what I give it and if it wants awake I'm up.

Now I have every respect for both the National Sleep Foundation and my sleep doc and I have followed their advice on good sleep hygiene for over four years now (well most of the time) and I gained much benefit form it. However, that is when I was well. Now I'm sick and no one knows what is wrong or how to fix it so I'm in all bets are off mode. Screw the rules I'm giving my body what it wants.

Anyone want to join me in a free range sleeping contest? No alarm clocks required.

No. Really, This is My Last One

Just wanted to post the link to the first ever blog carnival that I participated in.

Yeah!! Hello out there!

http://gracefulagony.wordpress.com/2010/08/15/the-kick-off-to-our-new-blog-carnival/

One More Thing

I guess I'm being prolific today. I just found this very interesting ebook. I like the fact that it lists lots of different options not just the ones espoused by the National Sleep Foundation (which aren't working for me and my invading army at present so alternatives are welcome). I also like that the author backs up their information with links to source material or things for further study.

40 Sleep Hacks: The Geek's Guide to Optimizing Sleep

Hey Lois, My Thing Went Off

My internal thermostat is broken. For some reason it reminds me of this Family Guy clip. The bugs that have taken up illegal residence in my body keep messing with my thermostat. I'm cold one minute and sweating buckets the next and then be freezing cold again all within the span of fifteen minutes. It gets worse with humidity and is killer when it is both hot and humid even if I am sitting in air conditioning (which makes me cold). The only time I seem to be comfortable is in dry 75F. If I'm tired at least I only get cold then.

I hate the hot flashes. The palms of my hands and soles of my feet sweat. Even my eyelids sweat. Every inch of me perspires while sections of my skin are freezing cold. Weirdest thing ever. I swing between wanting to crawl into a freezer and an oven.

Today is hot and humid so I'm miserable. I tried climbing into my pool which is a nice 78f. I lasted less than five minutes because I got instantly chilled. I hate days like this I just can't get comfortable temperature wise. I heard that the bugs can mess with the endocrine system. I think they are all laughing their heads off while swinging my thermostat between 90F and 50F. BTW, the temp I feel has nothing to do with my internal temperature. Last month when I was tracking my body temp I could be running a fever and feel fine and have a normal body temp while having an episode. Ugh. When are they going to figure this out??

Don't be surprised if the video clip quits working. It is copyrighted material. If you google "Family Guy thermostat" you might be able to find another copy.

Dog Day Afternoon

Okay it is really morning, but it IS a hot day in August. My neighbor's dog woke me up again. This is now a daily occurrence. Of course it doesn't help that I usually sleep until 11 or 12. But when one is chronically tired with bizarre sleep patterns anyway the last thing I need is to be woken up once I am finally sleeping.

The dog is actually quite cute and happy as dogs go. I think it is German Shepard puppy or some such. I don't know dogs that well since I am a cat person but it looks like a small version of a German Shepard execpt its ears are too big which might be normal in the puppy edition. The dog barks because the owner ties it up outside and it wants back in the house. It doesn't like being on its own. Even I know that dogs are social animals and they tend not to handle being on their own very well.

I don't blame the dog for this. The owner is a moron. These are the same people that used to start up a loud diesel truck between 5 and 6am every morning and let it idle for 20 to 30 minutes so the cab would be toasty warm when they got in (it was winter). Didn't matter how many times we asked them to stop. Didn't matter that diesel was over $4 a gallon at the time. They just don't care about anyone around them. I don't seem to need an alarm clock with these guys. They seem to be creatures of habit and enjoy making noise first thing in the morning. Apparently, if they are up everyone else in the neighborhood should be up as well. Absolutely clueless and selfish.

I love animals. I was even a vegetarian for many years. (I now eat chicken and fish but that is another long story so I digress) But when the dog starts barking and doesn't let up for an hour or two I start having daydreams that involve my son's BB sniper rifle, some collateral car damage and a quiet if somewhat unhappy dog.

So now I am awake. The dog has been taken back in the house. I'm tired but unsure if I'll fall back asleep or if I even should at this point in the day. I try not to sleep too late or I run the very high risk of becoming completely nocturnal. Of course on hot days like this, I prefer bumping around in the cooler evening hours. I hate the heat more than I hate my neighbors. Welcome to the Dog Days of Summer.

Today I'm Cranky

It was probably the neighbor's dog waking me up yet again that started me off. But I'm cranky today and here is my list of reasons:

1) neighbor's dog barking incessantly
2) pain in the right side of my jaw has spread to the left: when it is at its height I physically can not close my jaw. it gets stuck
3) if the pain in my jaw gets worse I'll be unable to chew food at all
4) the nerve tingling and numbness in the right side of my face is spreading; I am constantly scratching my nose, lips and chin and my right eye feels funny
5) the ringing in my ears is getting worse and has spread to my left ear
6) I've been couch bound for the last three days
7) my hands are too shaky to paint
8) I've only managed one shower in three days
9) I haven't been out of the house since last Thursday
10) my heartburn is getting worse to the point where I avoid eating or drinking
11) I hate my CPAP machine. I feel like it is trying to suffocate me.
12) I want to go on vacation somewhere next to the ocean
13) I want to go ice skating
14) I stink and I need a hair cut; I look like my grandmother on my dad's side (she always wore a very masculine cut).
14) my nails need cutting
15) my legs need a shave
16) I'm going to have to purchase chubby pants. Although I've lost scale weight I've lost all of my muscle mass and gained enough fat that my old pants don't fit anymore.
17) My body has lost its ability to regulate its temperature. I switch between sweating out my clothes to being cold and back again regardless of the ambient temperature.
18) I am now deconditioned enough that my muscles can no longer hold my vertebrae in place, which means I wake up in pain every morning and the simple act of sneezing causes severe back pain.
19) I can't exercise to recondition my muscles without crashing for days afterwards. (I am currently in the middle of a crash from my little pool experiment last Friday)

Reasons I should be thankful
1) I'm still somewhat mobile
2) I can still make myself a bowl of cereal and a pot of tea and occasionally an egg and toast.
3) I love watching movies
4) My mom understands
5) My friend in FL understands
6) My cats adore the fact that I can stay home with them now
7) I can still find positions to sit in where I don't feel any pain
8) Peppermint makes my heartburn go away (note to self: I need to buy peppermint)
9) My foot is well enough that I can now shower in my own bathroom instead of using the dinky shower stall in my husband's bathroom.
10) I am covered by an excellent sick leave policy, still have a job if I ever get better, and still have health insurance.
11) I am trying to learn from this experience. It is my dark night of the soul.
12) I get to read Jane Austin over and over.
13) my husband is beginning to understand
14) my sprained ankle is recovering remarkably well: I'm off crutches and only need my boot when I go out of the house
15) I have the Internet, Facebook, blogsphere and Netflix

What more could a girl ask for??

Why Am I Not Angry?

"a sense of serenity is born of acceptance"
-author unknown

Found at:
http://simplegracebooks.blogspot.com/2010_05_01_archive.html#4940215259131790875

Maybe That Wasn't Such a Good Idea

Well, I definitely overdid it. Not sure if it was the exercise or the fact that I vacuumed half the pool afterwards. Normally I can vacuum the whole thing so this wasn't an unreasonable proposition when I decided to proceed.

I crashed yesterday afternoon to the point where I dipped into my leftover prescription pain med stash. I spent the rest of the day on the couch covered in blankets watching Farscape. I was fried and sore. I'm still tired today. You would think that I just got back from climbing Mt Everest rather than a lame stretching session in the pool. OMG when is this going to stop?

First Exercise in 3 1/2 Months

I climbed in the pool today with my old water PT sheet of exercises today. This is the first real exercise session I've done since getting sick in May other than very brief walks around the block. I got the water exercises from a series of PT classes I took many years ago after getting severly deconditioned after my diagnosis of osteoarthritis of the spine. Compared to what I used to do back in May these exercises should be a walk in the park but considering I haven't even been able to do that of late I was dubious of what was going to happen.

I decided just to do one set of 5 reps of each exercise just to start off. Well many body parts creaked, groaned and outright complained but I got through it with only a slight stiff neck. Not too bad. I'm completely beat as if it were Wednesday at adult skate week and I had been on the ice for three days straight already. I'm off to take a nap. We'll see if I am functional tomorrow. If I don't crash too badly I'm going to try and do either water PT or yoga on days that I'm not traveling to a doctor's appointment. Baby steps. Baby steps

Who am I?

I don't currently know. I'm in transition or rather in limbo. I have a diagnosis of mono but suspect that I really have post viral fatigue syndrome. The diagnosis itself is an academic exercise at this point since the treatment is the same: listen to your body, don't push yourself, rest and eat well. I am still not equating myself with a particular illness since I'm still not sure of its name. So I'm adrift. Too tired to work, too sore to sleep. I am 80% housebound leaving only for doctors appointments and the once a week trip to the small market to get food for myself and family (yes, I could shop online but the trip to the store is one of my defiances against the illness so I'm not giving that up just yet).

My life these past four months has been so different. I used to play with lasers and now I watch butterflies and bees. I used to cook and now I watch movies. I used to figure skate competitively and now I sleep. I used to sew and garden now I pet my cat. I used to be wife and mom and now I am nobody. I can't work: I can't housewife: I can't mother: I can't skate: I can't sew. But being nobody is turning out to be interesting. I'm doing things I enjoy like reading the same Jane Austin novel several times over; watching Farscape episodes, in order, from the begining, on Netflix; learning that I was named after my mom's ballet teacher and my dad named both of my siblings; finding out that my teenage son really does give a crap about me; and, of course, floating aimlessly in the pool. Now, I get to watch grass sway, birds and bats soar, and clouds disolve. I get to pay attention to the minutiae of life that I was too busy for when I was well. I get to rest in a quiet house, alone. I am no longer a slave to my house, job, traffic, or a clock. I'm floating free through life. I get to just Be. Which is a wonderful thing.

New Symptoms

I have some new and interesting symptoms. Basically pain and sensitivity in the jaw. I wear a dental appliance at night to stop me from snoring. I've worn it for years and I love that little thing. It changed my life and it is wonderful.

Suddenly about a month ago I started to wake up with horrible pain in the joint on the right side of my jaw. I've had nerve problems with the right side of my head/face years ago which seemed to resolve when I got a new chiropractor. However, the tingling in the right side of my face is back. It makes my lips and nose itchy and I'm constantly scratching them. Sometime the joint pain in the morning is so bad I can't chew. I physically can't close my jaw. Since I got ill in May the ringing in my right ear has been way worse than it was prior to my bout with the mysterious virus. Is this all related? Is this another manifestation of the virus that has taken over my body? If I have mono, no it isn't. However, if I have CFS it is very likely it is part and parcel of the new me.

At first I figured it would go away. I didn't wear the dental appliance for a few nights and the pain seemed to ease up. I started wearing it again and I was fine. Then I went to see the dentist for a routine cleaning. This was the first one since I became ill in May. They had a horrible time cleaning my teath. It turns out that my teeth are all super sensitive and the gums on my right side couldn't be poked at all with the dental appliances. I felt like he was sticking needles into me. He pressed on the left side and nothing. Just a little pressure. He didn't find anything wrong with my teeth, toungue or jaw. He took a full set of xrays and they were fine. I kept using the dental appliance because it helps me sleep so much better. The jaw pain comes and goes randomly. I can't figure out a reason for it.

I saw my lung/sleep doctor today and he wants me on CPAP so I'll give that a try. Hopefully this will reduce the jaw pain since it will replace my beloved dental appliance.

My acupuncturist tells me that CFS in eastern medicine is considered to be a result of cold settling in the neck. This makes sense to me. I have most of my pain in my neck, shoulder joints and now the right side of my face. He seems to have quelled the headaches that originated from the ocipital ridge but the nerve weirdness is persisting. I have only been on the new treatment regiment for a week. It will be several more treatments before I will know if it is working or not.

Down the Rabbit Hole

To add injury to insult, last Wednesday evening I stepped in a rabbit hole and twisted my ankle. One visit to the ER, regular doc and ortho doc later I'm in a stability boot and on crutches. No break or fracture just a badly sprained ankle.

I've been reading a book about life threatening illness called Close to the Bone and I highly recommend it for anyone that is seriously or chronically ill. It is about the spiritual and emotional side of being seriously ill. It is about the "dark night of the soul" or as the author refers to it the trip to Hades. I find this a wonderful metaphor for illness and has gotten me thinking on many different levels about my own illness and subsequent "accident".

"Why is this happening to me?" or "What am I supposed to be learning from this experience?" The second question is one I always ask during or after some major junction in my life. I haven't arrived at THE ANSWER to this one yet but the little things I have learned so far include:

1) I don't know how to relax
2) I don't know how to have fun
3) I like hanging out with my son
4) I like being home
5) I don't like my workplace anymore (but the work is interesting)
6) I like being alone
7) I enjoy reading and writing and watching movies
8) I love being in my swimming pool
9) One of my friends is a jackass and two others are really cool

Some people have epiphanies. This hasn't happened to me yet. Some decide to scrap their jobs and live a totally different life. Again this hasn't happened to me yet. I guess I'm somewhat happy about the way my life was. That said I'm in no rush to return to it. I like being home more. Maybe I should enter the housewife phase of my life. I'd given up the career phase long before I became ill. I'm still not out of the rabbit hole yet. I'm still exploring the warrens and tunnels. I'm still waiting for my own personal epiphany.