Pushing Myself

I've been doing it all week so I can be ready to move tomorrow.  I'm grateful for the dress rehearsal (pre-CA) and all, but I'm wiped OUT!  I've been getting through on green tea and chocolate, buzzing myself up on sugar, caffeine, and NSAIDs to make it through the day instead of more wholesome food and rest.  bleh.  Liver, kidneys and pancreas.....please don't fail me now.

The result? I'm a weepy mess of emo.  I'm about to go over to itunes and pick out some sad songs to listen to while I pack.  I'm all about allowing emotion to be what it needs to be, about feeling what I'm feeling and learning from the situation.  Good stuff.  But I happen to know that when I'm exhausted and weepy not much good can come from it and the best thing for me to do is to go to bed.   I feel scared about the future, I fell scared that I won't be able to make enough money to take care of myself, I feel scared that my health will continue to decline, I simply feel edgy, scared, worried, anxious...my body is tired, my spirit is weary, I feel a little lonely and a whole mixed up sense of other emotions.  a jumble.  And I'm actually not too worried about the fact that I feel worried.  I can see and feel that emotion without letting it completely take control.  I know I'm feeling all of this because I'm exhausted, and so I can do my best to let go of what the worry means....because it means nothing except that I need to rest and recuperate.

But I'm moving tomorrow.  and I've got stuff to do.  arguh.  

Even good stress is stressful.  I'll probably have to come back here to clean and to pick up some last things that will get left behind, but I am seriously looking forward to being in my new place with my new roommate.  There's so much I want to get done tonight and I just don't think it's going to happen.  I want to be done, to not have to come back here, but realistically....I can.  I have the flexibility of moving from one friends home to another friends home, and I don't have to do anything all at once.  I can do it when I'm ready and able, even if it takes a week to get done.

One Day At A Time.

Blessed Be.

Not Quite Flu-ey

But sadly I think I might be getting there.  I've had strange muscle soreness in both quads over the last two days and zero physical or mechanical use reason for the soreness.  The *only* thing that may possibly have affected it is that where I was housesitting was a single story and my room here at home is on the second floor.  But it's not like I'm doing stairs or something, I'm using the same precautions I always use and I'm not taking the stairs any more often than usual. 

At work today I looked up the muscle weakness association between the quads and the small intestine meridian according to a Touch for Health book. www.touch4health.com A small intestine involvement isn't unusual for me, considering Celiac Disease, but I don't understand why now.  Even since the incident in Sedona where my legs gave out on me and I had PEMS for 5+days...and it was almost 2 weeks til my legs felt completely reliable, I've been super cautious to stop before overexerting.  

Tonight I feel weepy, have the teeny beginnings of a sore throat, and my cervical nodes are swollen.  All of this points to feeling flu-ey, the collection of flu-like symptoms that is pretty common...

sigh.

There are two variables that I see at the moment.  I just finished my week long course of colloidal silver on Sunday, also the same day that I came back here to the house after about 10 days housesitting.  While I stopped in here to take a nap, I wasn't here for more than a couple of hours.  Is it the silver that was helping me to feel that much better that two days later I'm feeling icky?  Is it the environment here? the smoke?  

I'm only here until next week Friday, and I'm going to Tucson this weekend for BCD.  I can pick up some more silver tomorrow and resume that Tx to see if it help me improve again.  Part of me is really hoping that with the move I'll experience some sort of superb improvement in my health status.  Really, I'd be ok with less than particularly superb, but I'm going for something better.  I've never felt as poor in my health as I have this past year.   I am particularly sensitive to my environment, what if there's some mold here that combined with the smoke has been negatively affecting my health?  And to note again, while my health has been on a slow but steady decline with spurts of remission and symptoms for many years, there was a significant increase in symptoms when I moved here to Phoenix.  That's when the severe hives got so bad I needed prednisone. I don't seem to have huge improvement with 7-10 days away from Phoenix in California, but perhaps that takes longer.  I won't know until I move, but there is that possibility.   I moved in September of 2006 and the terrible hives started in January of 2007.  

Some thoughts. 

So I'm putting myself to bed early.  Night all.

No Nap?!? My week in review.

So today is the first day, perhaps this year...(the memory isn't great) that I got through the day, accomplished a bunch of stuff, and I didn't absolutely need a nap, even an anticipatory one.   I think this is mighty fine.  I've been feeling so good I'd almost say I'm kinda normal.  That is, until I have to do the stairs a few times in a row because I forgot something I needed, or if I'm carrying something heavy (like all my schoolbooks at once.)  I've had a good week, and I've especially focused on getting a good nights sleep.  I think this is making all the difference.  I'm also towards the end of a course of colloidal silver, so perhaps that is helping my body fight the virus a little...or perhaps there was some minor underlying bacterial infection that was contributing to a weakened immune system.  Dunno...but I'll take it. 

At the moment I'm feeling a need to take note of a few pretty awesome things I've done in the past week so I remember to give myself credit and recognition.  

I am learning not just a new operating system with the new MacBook, I am also learning how to download an install software, how to transfer data from my hard drive, how to convert .wma files to MP3 files, new Office for Mac software, iTunes software, a new web browser, etc. Wild. 

I finished a rough rough draft of my admissions essay to USF.  I've got a few really amazing people who have volunteered to read it for me, 2 with PhDs and one my brother who has a degree in literature, and probably one more with a writing degree if I asked. my old English prof, who is writing me a letter of recommendation would probably help if I asked too.  Neato.  I've still got a few weeks to turn in the application.  In fact, since everything is electronic and is coming form different sources it all doesn't all have to be together.

I have to register for spring classes tomorrow morning which seems simple, right?  With anticipating my move to California and the transfer into (possibly) the state system there, I've had to do a lot of research into what classes will transfer.  I am also uncertain at which school I belong, and each one has slightly different requirements for transfer admission.  Small differences, but all the same...I'd rather not take a class here and have to retake it for whatever reason.  And some school require a class to be taken at their institution, and the State Board has some requirements for the degree program too.  And there are differences in community college, state college, and private college.  That's a lot of reference material to sort through to decide on classes.  And then I have to look at schedule, availability, etc.  That's the easy part.  (yikes)

I was housesitting for 10 days.  That might not sound like a lot, but to me it's quite disruptive to my space and my schedule.  Now traveling is different, as I switch into constant unexpected disruption mode, right?  But being in town, doing my regular stuff, and not being in my space with my kitty can be rough for me.  

I negotiated with a new roommate to move in two weeks.  I gave notice to my current one.  I've started packing and even more planning the packing has been done. 

I taught a kick ass piercing training class for 12 people over almost 5 hours...and I did good. 

I printed out, filled out, and organized the UPC symbols a receipts needed for 3 different rebates.

I did my Butchmann's Experience registration.

I accepted and wrote thank you notes for both scholarships I received. 

I learned how to work iChat and had a video call with my dear LondonFaerie. :)

I took care of myself, I rested, I watched movies, I slept when I needed to, I fed myself ok.  I'm (mostly) keeping up with schoolwork and so far have 100% on quizzes.  (3 major tests this coming week) 

Combine all this with full time class and 3 days of work, plus two private clients, and all the driving between work, school, appointments, home, and housesitting, and meetings...I can't believe I'm not more pooped.  

Okay bedtime.  Thanks for reading.  xoxo

31 page views

Weird.  I'm learning about the stats information on this site that is available to me.  This morning at 7am I got 31 page views out of Columbia.  WTF??  And they were about my 9/11 and my Mom post I made, well, last Saturday, the 11th.

Weird.

I feel better :)

I'm having a pretty darn good week health-wise, and I'm quite excited about it...well, excited as I can be while still being normal tired, rather than knock down tired and wound up anxious freak out can't sleep tired.

I'm taking pretty good care of myself this week, although I could be better.  I'm noting differences primarily in two major symptoms, fatigue and splenomegaly, and comparing them to which NSAID I was taking.  Tylenol seems to be by far the best, but I felt liver pain, I think.  If I'm on it every 4-4.5 hours then I'm alright, but it takes a little more awareness while the naproxen seems to give me a smoother up and down, if that makes any sense.  When I run out of tylenol, I know it, cause stuff starts to hurt, but on some days if I'm not pushing myself too much I may only need one naproxen in the morning, on a harder day I'll take a second one.  I do find that I seem to be a little bit more nauseous on the naproxen.  For a few days I switched to ibuprofen and I felt pretty crappy.  Although I admit that I wasn't on the ball about the every 4 hour thing, and so I may still have some room for improvement.  I haven't had spleen pain  in a few days, but the overall discomfort has been pretty constant.  I'm aware of say, how I lean on a counter, or how I position my body when I sleep.  I feel full and bloated and swollen, but I can deal with that more easily than the pain.

I'm moving in two weeks.  I have a helper with a trailer and a suburban, but no one so far who can help carry boxes.  Although if I can get the boxes onto a dolly, my friend can move them.  I'm a bit concerned about how this is going to come down.  I think that if I'm ready and packed, and that I take the time to move everything from the second floor in small pieces so I'm not going up and down the stairs, maybe I can 'stage' most stuff in the garage, and that will make moving day easier.  If I can do it in one trip, I can push myself through knowing I can crash afterwards.  I don't have much stuff, but I wouldn't mind one other person to help with boxes.  Ahh, it will be what it will be.  A move from a great roommate situation to what I perceive will be a better one.

 And it will be practice to see just how much crap I've accumulated living in one place for 18-ish months.  The longest in a few years.  This move will be good prep for the big move to California.  I'll have some idea of what I'll need to have out and available as well as what I absolutely don't need out and can be left in longer term storage...and that only leaves some middlish stuff, some of which I will not keep, some I will and I'll have to find a place for it.  This move will help me decide if my plan to ship a handful of boxes to SF and then load up my car will work.  (shipping the bike, of course) I SO don't want to pull a trailer, I'm simply not comfortable with the idea of being alone on the road with a trailer.

This will also be the time to decide if Switch is coming with me to California.  I just don't know.  I am so grateful to have him around, especially when I'm sick and in bed for a few days.  He really approves of mom taking lots of naps, and it's good to have support.   He helps with the loneliness that hits sometimes.   I am missing him this week while I'm housesitting, and I'm looking forward to taking a nap at home tomorrow afternoon with him.  Only a couple more days til the folks who live here will be back from Malta.  But I know that finding a place to live with a kitty is hard, and more expensive.  I don't have to decide now.  There's time, there's application, there's planning and manifesting a new place to live.  I'll simply open myself to what Goddess has in store for me, just like any other day.  :)

Alright, a fairly dull post, but I'm so thrilled to be feeling better that I had to share.  

You know what?

You know what? Sometimes I forget that as an adult working a job and going to school can be a really challenging thing to do...and nursing prereqs aren't the easiest classes either. Sometimes when I'm feeling frustrated, I like to remind myself of this.

And you know what? Living with an auto-immune dis-ease, even if the Dx has been with me for 14 years, it impacts my life several times a day and that can be a challenging thing too.

And you know what? Living with a misunderstood, socially dismissed, medically challenging, and personally limiting chronic illness is a pretty hard thing to do too.

And you know what? I do it all.

And most days I do it all with love and grace, and tears, and frustration, and joy, and with sincere gratitude for my life.

And you know what? I get As. I have friends and lovers who appreciate me, I have family who loves me, a Tribe that supports me, a super cool motorcycle named Lucy, and I have this amazing body suit that temporarily hosts my beautiful and powerful Spirit during this turn of the wheel that is capable of the coolest sensations like pain, anxiety, orgasms, and of course, sneezing.

I am alive.
Thank you Universe, for my life. I think I'm doing a damn fine job.

Thank you Goddess for the opportunities to serve you, myself, and others. I am blessed.

Thank you, thank you, thank you.
Love, love, love. <3
Sent from my Verizon Wireless BlackBerry

Post-Exertional Malaise

These few paragraphs describe what my daily life is like.  Not me individually, of course, but the average ME/CFS patient.  I like the way pacing is described, also, how resting up ahead of time can be beneficial, and how pushing through something can cause a crash and more severe symptoms.  This is how making myself get up and see 3 clients (even though I need the income) when I'm feeling quite poor can cost me a whole day of activities..just so I can make $60.  bleh.  Okay, here ya go...

Pacing, according to Dr. Campbell, is a multi-layered process of adaptation. People can gain control by finding and staying within limits in four areas: physical activity, mental activity, social activity and physical sensitivities. Instead of one energy envelope, Campbell says that every type of activity (such as standing, talking, driving, or using a computer) has its own envelope or limit. “Chronic illness has different rules than acute illness,” Campbell says. CFS cannot be pushed through or overcome because “the body will always win, and exact a punitive price for small mistakes.” Just as overdrawing a checking account by $2 can result in disproportionate bank fees, Campbell notes that exceeding one’s energy limits by one hour could lead to a week or more of suffering and PEM.



Pacing offers a wide variety of practices and behaviors that can help patients learn to better manage their limitations and avoid that suffering. Pacing strategies include reducing activity level, taking daily planned rests, setting activity limits, switching among tasks, and keeping detailed records. Campbell points out that, “Pacing also includes making mental adjustments based on acceptance that life has changed. Acceptance is not resignation, but rather an acknowledgment of the need to live a different kind of life. Pacing is not a single action or strategy, but rather a way of living with CFS.”


The first and most important strategy recommended by Dr. Campbell is pre-emptive rest according to a planned schedule rather than in reaction to symptoms.10 Rest breaks are integrated into a person’s daily routine, regardless of how the patient is feeling. By taking scheduled rest, lying down with eyes closed, patients have found that they can avoid PEM while still accomplishing the same tasks. The length and timing of rest breaks will vary from person to person, although severely ill patients may need many brief rests throughout the day (e.g., 15 minutes of rest every hour or two).

Excerpted from:
http://www.cfids.org/cfidslink/2010/090103.asp

Do What You Love

And if yer lucky, do *who* you love too.

I love piercing. I am a piercer. I taught today for over 4 hours. I'm tired, sure, but energized too. I had a blast. I've found something I'm really good at. I'm really good at bodywork, but it doesn't energize me like it used to.

I received compliments that my teaching abilities had improved too. Although I can see this, I do believe it's more a function of confidence, experience, and personal internal identification. Throw in some blessed recognition from people whom I consider mentors, as well as a fan club, and yeah, it does something for the confidence levels.

I am coming into my own power and it sure feels good.

I felt so blessed to be able to share knowledge today, so grateful that each person could be there to contribute.

I felt better today than I've felt all week. This was great cuz I was able to give much to the Team, but I have not given as much to my homework/studying, nor to my admissions essay for USF. Somehow feeling like crap doesn't encourage me to sell myself to the admissions committee. Gotta get on that. It so important, but I'm in one day at a time mode, so sometimes longer range planning things get pushed aside for the more immediate needs.

I miss my bike, I dearly miss riding. It's a way that I can feel free. I feel like I'm moving with life, instead of moving slowly behind everything around me. I can go fast without my tired fatigued body slowing me down, at least for a little while. I can get away, focus on the moment. Sigh. My friend says prob by the end of the month we can have her repaired since it seems more complicated that he originally thought. Here's hoping. :)

Ok, I'm typing this on the crackberry, so I'm going to head to bed. Blessed Be.
Sent from my Verizon Wireless BlackBerry

9/11 and my Mom

Nine years.

And every year since I am bombarded with 9/11 memorial stuff, posts, actions, speeches...all which are perfectly normal and valid considering what happened nine years ago today.  Nine years ago today was the last time I talked to my Mom on the phone.

But my experience was different.  I only had 17 of 'normal' post 9/11 processing and adjustment to do before I got word of my Mom's death a couple weeks after the tragedy.  And in my mind, in my world, losing my mom was a greater tragedy.  I'm not saying that the deaths in 9/11 aren't terrible and tragic, but only that the loss of those lives didn't touch me so much personally...and especially didn't touch me at all once my Mom died.  Then that's all that I knew, and I stopped paying attention to the rest of the world, to the victims families, I didn't pay much attention to the police, firepeople, or other first responders and volunteers, even though I knew that somewhere else there was tragedy going on. But I was already full of grief, and had no more room in my breaking heart for all of them.

Every year for these two and a half week I'm a bit of a wreck, because as soon as all the 9/11 memorials come out, hit the news, etc...all I can think about is my Mom's death.

But this years been a little bit different.  The controversy of the Muslim community center, misunderstood by the ignorant, and defended by Americans who actually hold the ideals of freedon of religion...this mess has drawn much of the energy away from the memorializing that usually occurs.  So I've been able to focus on different emotions this time around, and not just grief and loss.  'Cause once 9/11 is past, I've still got two weeks to mourn, to remember, to grieve, for my Mom...until the anniversary of her death.  And after that passes I seem to be ok again for another year. 

And Dad decided to go right around Memorial Day...so while that's kindof convenient too, there's a lot of Memorial Day Hullaballo that goes on too which also brings up more memories than I think would come up if the day he died was lets say, a tuesday or like june 2, or some other non-descript day. 

I'm looking forward to having my new computer, yes, but also because I am getting an all in one printer free (after rebate) with the purchase of the puter.  I'd really like to get the pictures I have of Mom and Dad digitalized so I can share and actually use them on the net.

ok, guess that's all for now.

This is how I feel today

Tired and sleepy, but safe, and comfortable, I guess.  I like this picture.  It reminds me of who I am when I feel better, the colors, the flowers.  Lovely.  I had a lot of trouble getting out of bed this morning, made myself go to work to see 3 clients, slept all afternoon, and now I feel too tired to study.  I wish I had the whole day tomorrow to rest, but I don't.  I have to do something I love to do, and that I'm grateful for the opportunity to do- teach piercing.  :)  I only wish it was happening on a better day for me. Ahhh, it is.  And that is all. 

I am going to try to get some studying done, maybe I can do 10 or 15 minute intervals, then rest for a bit.  Take lots of breaks.  I'd also like to be done with my admissions essay for USF.  I'm feeling so icky that I'm having a lot of trouble *believing* everything that I'm saying in the essay.  It's a chance to be powerfully affirmative about my chosen path and career, and instead I'm simply tired.  I wonder how the hell I'm going to make it to nursing school, how the hell I'm going to get through it.  I want it.  bad.  I do.  And that will have to be enough to keep me going.  My health will get better, it has to.  There has to be an answer.  Something to help my body fight this virus...or possibly viruses.  It will get better, because I can't imagine living the rest of my life like this.  There is an answer, or many answers.  And I'll find them.  I'll figure out how to get better, how to get health care, how to work enough so I can pay my bills, how to have enough energy to do schoolwork, to do housecleaning....because all of those things are really hard for me right now. 

Ok, off to study.  At least it's totally cool stuff like the clotting cascade and wound healing.  Dig it. :)

isolation and anger

Sometimes I'm too tired to be angry. Sometimes I simply don't care, because I know it's not going to change anything. And sometimes I'm so pissed I could spit...and sometimes I do.

So often taking care of myself means staying home and a lot of time by myself. When I'm home and in my chosen space with Switch, then it's sometimes ok. This week, and through the 19th, I'm housesitting. Not too bad for the money, but it leaves me out of my element, out of my routine, and without access to regular comforts. I find comfort in simple things like my sheets and blanket, my pillow, my art on the walls, and there's no substitute.

I got my diagnosis, for whatever it's worth. I guess it all official or something. I have ME/CFS. I have chronic illness that very few people understand. Someone told me, or perhaps it was on some facebook status, but it was within the past few weeks. To paraphrase, For those of us who learned young to put others before ourselves, Universe will find a way to make us pay attention to ourselves. Yeah. I got that. I'm paying attention now...can I feel better soon, please? So not only did I wind up with 2 chronic illnesses, I managed to get weird ones. At least CD is becoming more known...but I don't think there's a more misunderstood, or a more underestimated or dismissed condition than CFS. No, it's not threatening my life, today. But it is killing me. Every action, every exertion, every expenditure makes me worse. Activities cost more, pain hurts more, and recovery takes so much longer.

This is so difficult to describe. I've found it hard to feel heard and understood, even by my doctor. I was explaining to her all the changes I've made in my life, to slow down, taking an online class, shortening my work hours, building naps into my (most) daily schedule...and she said something like, "wouldn't that be nice, to be able to nap everyday." Fuck, I mean, come on. I've had friends do it to, without meaning to hurt me, I'm sure. I was attempting to explain the very real symptom of emotional lability...in short, when I'm tired I get cranky, weepy, everything hurts more, feels deeper. Yeah, that happens to all of us, I know that. I know I'm not unusual...but does it happen to you after 5 hours of regular low-intensity ADL? Probably not.
And learning disabilities are not uncommon. But do yours get *worse* as time goes on? Daily and over months? Probably not. Do you loose the ability to pronounce words, or to string words together into a coherent sentence?

I save every bit of energy I have. I park as close to a store as I can without feeling guilty that someone might need it more than me. (It used to be my habit to take the second closest spot available...sometimes leaving many closer spots.) I've decided that if I have a flare-up that's anything like last season, I AM going to ask for a gimp parking pass...at least for school. PRN. Dunno how that works, but I'm assuming I'd need at least a Drs note. I take elevators and escalators when I used to take the stairs, and sometimes I rest between my car and class. I arrive early in case I need more time to get there. I will load myself up with groceries because taking more then one trip is more effort. I spend weekends in bed, my feet up with edema...but still trying to get schoolwork done, trying to stay connected with the outside world. The new computer will be helpful and more reliable.

And that thought brings me back to where I started. Taking care of myself means staying home, and friendships and relationships are suffering. I don't feel like I have much support of my community because I am not able to go out as often as I'd like. Yesterday I was wasted, wiped, and I needed to be in bed at noon...but it was 5pm when I crashed in the Whole Foods parking lot for about 30 minutes so I could go to coffee at 7. It was too far to drive home to nap and I needed to see people. I also needed to be sleeping and resting, and feeding myself better. But I couldn't manage to put myself to sleep in the afternoon...and the main reason why? Because I'd be alone.

When I'm "normal" tired, then bed is a relief, but when I'm over tired, wound up, and anxiety levels are high...then I get afraid to be alone. I eat sugar and drink caffeine to try to keep myself going, which only hurts me more. And I'm already alone too much.

And when I'm wound up or anxious, I get pissed off about it. I get angry, I feel denied an active life, I feel like I've been denied the joy that comes from healing others because *I* need so much attention. I feel really sick of myself, and thoughts get uglier...let's just say I dont' practice the most positive self-talk during those times. I seem to get a bit of the teenage angsty "nobody understands me" crap going on. But the adult in me says I don't feel heard or understood.

Archetype Work

I've been working with a few archetypes, re-examining my relationship to them, their place in my life, the level of importance, type and frequency of expression, etc.  Something new was brought to my attention a few weeks ago, a new growth opportunity that I'm still fairly uncertain of, but certain at the same time.  Rather, I'm certain of the direction and the likely outcome, but I feel like I'm on new and shakey ground with it all. 

So I plan to write at least one post about each separate archetype.  I want to include the basic definition as written in "Sacred Contracts" by Caroline Myss as my possible starting point, but if possible I'm going to include other research and conclusions form other sources as well.  And then I plan to explore my relationship to and with that archetype.  Some might be archetypes with which I personally identify, ones that used to be prominant, ones that I think might be moreso in future, and I might also look at some that I don't carry but might exist in contrast to or in relation to sertain archetypes I do carry. 

I do feel pretty tired tonight, so maybe I won't start with the first one right now.  I did want to post my intention, however. 

PEM Series

PEM Series

Post-Exertional Malaise

080402

Yes, it's more than just feeling tired all the time.