Ten Perks From Being Housebound

I got the idea for this post from Toni Bernhard's piece in Psychology Today

Top Ten Reasons I Don't Mind Being Housebound

I changed the title a bit because I DO mind being housebound and would love it if I weren't.  Anyway, onto some light hearted fare....

1. Only loosely bound to a schedule.  The only time I need to pay attention to a clock is for dinner prep or doctors appointments.  Otherwise I can completely ignore it.  I no longer need to wear a watch.
2. I can sleep whenever I want and don't have to stress over insomnia or an irregular sleeping schedule.  When I first got sick I was constantly nodding off wherever I happened to be sitting so I started calling it free range sleeping.  Now that I've been sick for six years I've settled into a more consistent sleeping pattern.  Since I'm on disability and can't work, I don't have to force myself to sleep on a regular schedule.  A few docs' have suggested I take sleep meds but I figure why?  I don't need to be up in the morning so why stress over it.   I go to bed when I'm tired no matter what time of day it happens to be and sleep for as long as I need to.
3. Binge watching entire TV shows.  I think the longest binge was the original Stargate series.  Nine seasons at 22-24 48min episodes per season.  It took me over a month to get through it.  I am a bit bummed that the current practice is down to 13 episodes at 41mins a piece.  Now it only takes a couple of days to get through one season.  Sigh....
4. I no longer have a boss to answer to.  No more uncomfortable performance reviews where they tell me I'm doing a great job but they can't give me a pay raise because _____.  No more office politics.  No more misogynistic coworkers. 
5. No more commute to/from work.  OMG this one was getting horrendous by the time I got sick.  A 15 mile drive that used to take me about 20mins was up to 45mins on a good day and 3+ hours on a bad day.  
6. I can go outside into my yard almost whenever I want (I do have the occasional day where this is out of the question).  Working in a government lab meant that around the winter solstice I literally never saw daylight.  I went to work in the dark, worked in a lab without windows and drove home in the dark.  Now I can open shades, open windows, or even walk onto my deck whenever I want.  It might be freezing outside but I can stare at the trees whenever I want and breath fresh air whenever I want.  During the warm weather I can sit outside for hours.
7. I get to have cats around me ALL. THE. TIME.  Woohoo!
8. I get to drink lattes almost everyday.  My son and I go out for coffee most days.  We get to chat a bit and have great coffee together.  We search out little coffee shops together.  This was a tradition that me and my mom started decades ago.  We used to go to Dunkin Donuts for a coffee and donut together once or twice a week.  I'm so glad that I get to do it with my son now.
9. I can wear my pjs all day if I want to.  Or I can wear the same clothes for multiple days in a row.  And, I don't have to wear coordinated outfits.  I can wear sweats or yoga pants or leggings or tee shirts.  And I don't have to wear a bra!!!!
10. Lots and lots of pillows!  This is the one perk that I share with Toni.  I have a big pile of pillows on the couch and another pile in my bed.  

Spock

Normally the life and death of celebrities both entertainers and scientists don't bother me much.  However, the recent loss of Leonard Nimoy has affected me deeply.  I'm old enough to have watched the original Star Trek.  I watched for many many years often seeing episodes multiple times.  The show had a profound influence in shaping who I am now.  I came to understand the absurdity of racism, the value of sentient life and the wonders of science and space.  Spock was my favorite character and from what I can remember the first person that I ever admired.  He was smart, knew tons of science and had no emotions.  Having an extremely sexist father emotions weren't valued but rather seen as a weakness so I aspired to be like Spock.  I wanted to be devoid of emotion but smart as a whip and know lots about science.  He heavily influenced the core of my being while I was at an impressionable age.

Oddly I never knew much about Leonard Nimoy the person.  My husband had met him once about ten years ago when he sat in front of him with his friend William Shatner.  Hubs was mixing sound for a Klezmer band at the time.  That was the first time I found out about his Jewish roots.  Since his passing I seen some of his gorgeous photography and found out that he was a supporter of the fat activist movement.

Each time someone posts something about him I cry.  I am in mourning.  He was such a huge influence on the way I am.  I can never thank him enough.

Astronaut Terry Virts captured this photo from the International Space Station flying over Boston, where Leonard Nimoy was born.

"May the Lord bless and keep you and may the Lord cause his countenance to shine upon you. May the Lord be gracious unto you and grant you peace." The accompanying spoken blessing, "Live long and prosper."

Enduring vs Thriving

There is a vast and sometimes what feels like an insurmountable difference between the two.  According to Google:

en·dure

1. 1.

   suffer (something painful or difficult) patiently.

   "it seemed impossible that anyone could endure such pain"
2. 2.

   remain in existence; last.

   "these cities have endured through time"

thrive

    1.  (of a child, animal, or plant) grow or develop well or vigorously.          "the new baby thrived"    2.  prosper; flourish.         "education groups thrive on organization"

As a chronic chick, I definitely endure daily the slings and arrows of my illness.  So far I still "remain in existence" and often "suffer patiently".  However, on my better days I also thrive.  I flourish and prosper and grow and develop.  I guess it is a matter of perspective and a new definition of success.  

I am so glad I studied Buddhism under a nun for several years prior to becoming ill.  I think it has been my bridge between just enduring and actually thriving as a chronic chick.   In Buddhism it is believed that the basis for all suffering is grasping/wanting.  As a Buddhist, I try not to grasp at things.  It can be something as simple as wanting a new bathing suit that I can't afford and won't use anyway to desperately wanting to get better.  I constantly remind myself that all things change and all things are impermanent.  All of my things will be gone in years, decades or centuries hence.  All turned to dust.  And I am just as impermanent as my things.  My body will leave this earth at some point and will become dust.  While my body feeds the worms my spirit will be reincarnated into another body and my lessons will continue.  

I think this is why I can thrive as a chronic chick.  I'm not dependant upon my body working for me to prosper and flourish.  Instead of trying to accumulate wealth/status/influence, I'm happy to feel wind in my hair and sun on my face.  Hey I managed to toddle out onto my deck today to enjoy the sunshine!  To bask in the glory of nature!  Hey I managed to answer someone's question on Facebook who is also struggling with chronic illness.  Now they are happy since they know they aren't alone and they have someone else they can add to their support team.  My definitions of success are making someone else happy, lightening someone else's burden, managing to get out into nature, enjoying sun and wind and rain and snow, noticing and taking pleasure in the minutia of life, learning the names of bugs and plants and trees, managing to read a science paper, learning something new.

Without my Buddhist perspective, I would more than likely be stuck enduring this illness but instead I find that I'm often thriving despite it.  I see it all the time on blogs "I am not my illness".  I think this is what is meant by that.  Once you stop grasping at the life that you once had or grasping for a fully functioning body, you can thrive instead of endure chronic illness. I consider my body a blessing, even if it is broken.  We are lucky to be born into this world and wander this earth for a short time before reuniting with the stardust once again.

White Tara
Female Buddha of Healing

Extra Floaty

I just spent the last hour writing for this post.  I had to save it as a draft because I realized that it was a huge justification for how I got this way.  This post is supposed to be how I feel about being this way.  So without further ado...

I am fat.  I am very very fat.  I just weighed myself (I need to throw the scale out) and I'm 270lbs on a 5'2" frame.  My BMI went over the 40 mark a few years ago.  I have gain 50lbs since getting sick three years ago and I've lost a good deal of muscle mass so I've gain more than 50lbs in fat alone.  I'm huge.  I'm now a 3x-4x depending upon brand.

To say that I HATE it is an understatement.  I LOATH it.  I wish it would stop.  I already know a lot about body weight and fat loss.  I know a lot about how my own body functions and how it is broken.  What it comes down to is that my body likes keeping weight on.  I can NOT loose weight by diet alone no matter what foods I eat.  I have only had successful weight loss when I have exercised for three or more hours per DAY.  Yup.  Each and every single day.  Three hours of weight lifting, aerobic activity and stretching.  Don't get me wrong I LOVE exercising but if you work full time and have a family to take care of three hours per day is NOT doable.  I trained harder than many athletes but had the body of a Sumo wrestler.  Not fair!  Best I can hope for is maintenance which I managed to achieve for well over a decade.

Then I got sick.  Housebound and often bedridden I'm having a good day if I mange to circumnavigate my backyard never mind do a solid ten minutes of exercise.  I changed my diet, again; for energy maximization, again.  I've tracked calories and fat/carb/protein grams on myftinesspal.  I should be loosing weight.  I'm not.  I'm steadily gaining.  Each season I have to buy new clothes because I no longer fit into the ones from last year.  I HATE this.

I feel like that fat disabled lady who's edges squish out the sides of her wheelchair.  I've always looked at these people with disgust and hatred.  Now I am one of them.  I am the fat old lady that needs to be pushed around oozing out of my clothes and my chair.  My ass just fits into the chair.  If I have stuff in my pockets I get stuck in it when I try to stand up.  If I get any bigger I will have to buy a bariatric chair.  God I even hate the name of it.  I will be a bariatric patient.  Beyond morbidly obese.  One of THOSE people.  Fat and ugly and sick and HUGE.  This fat hatred.  This body hatred.  I learned this from somewhere.  It doesn't matter where.  All that matters is that it HAS to stop.  I have no control over my body at this point.  I have adjusted my food for energy levels which is the most important point right now.  Weight loss will have to wait.

In the meantime, I have a massive problem with body image.  I have to stop hating on myself and others.  So I've joined fat acceptance facebook pages.  I'm in a Fat Fitties group even though I can't exercise.  I'm following several fat activists.  I'm learning even more about fat loss or lack there of.  How it isn't our fault and it isn't a huge moral failing.  I'm starting to see that a lot of the food bloggers have hidden eating disorders.  Even the writers themselves often don't see the disordered thinking.   I need to distance myself from it.  I can easily get sucked in to the "correct diet" mentality.  Punishing myself for eating a piece of bread or having one too many eggs at breakfast.  I want to establish a new set of food rules for myself but even that is suspect to me.  Maybe I'll wait.  I think I need to do more fat acceptance work instead.

Right now I'm angry that Paleo hasn't cured me of CFS.  Paleo hasn't led to weight loss.  Paleo seems to have led to weight gain (but it might just be my body is that fucked up that any diet would lead to weight gain).  I seem to be eating too much but if I eat less I don't feel well.  I'm confounding health with diet and sometimes it just doesn't work that way.  The food bloggers I follow are all of the mind that you can cure anything via diet and regular western medicine is evil.  Sometimes illness is just too great to be overcome by diet.  One of the bodies that was found frozen in the ice in the arctic had Lyme.    Infection was the number one killer of Paleolithic people.  Diet can't always fix you.  It might make you way worse but it doesn't always make you better.

So I'm sad.  I'm confused.  I'm not sure what road to take next.  I know I can't calorie restrict because it will make my illness so much worse.  I've maxed out my diet to provide my body with the best building blocks I know of for self repair.  Yes I cheat but not too much.  If I cheat too much my body is quick to remind me of what I shouldn't be eating.  Cheating shouldn't be a 'thing' anyway.

In the meantime, I'm reading about fat acceptance.  Even if I get healthy again and start exercising regularly I seriously  doubt that I would get anywhere close to my "normal" BMI for my height.  I would be happy if I break the 200lb mark.  But what I really need to do is stop hating my body.  I need to stop thinking of large people as ugly and unhealthy.  I need to reclaim sanity and a healthy body image no matter what size I am.  I need to stop the self-loathing.

So right now I am extra floaty.  I call myself this because I float so easily in the water.  I got to go in a pool last week and I was surprised at how buoyant I am.  It made it really easy to swim and walk around in the water.  I managed to stay an entire hour in the water, drifting around.  I'm definitely going to start exercising in the water when I get some stamina back.  Being extra floaty is a good thing with CFS.  It makes water exercise possible and that is the first good thing I can say about being extra fat: I'm extra floaty and extra floaty is good.

The Meditation Challenge: Day One part two

The three questions:

1. Who am I?
2. What do I want?
3. What is my dharma?

During meditation these answers came to me:

1. A soul born into an imperfect body.
2. Peace and happiness.
3. .....

Meditation Challenge: Day One

I signed up for an on line 21 day meditation challenge through the Chopra Center.  I'm already behind several days.  I'm supposed to be on day 4 and I've only done the pre-challenge exercise.  This post is part of the Day One challenge.  I want to write about it here since it is so interwoven with CFS.

Here is my assignment:

"Before we meditate today, let's begin by asking ourselves Who am I? How do I define myself? By my experiences, interactions, friends, lovers, or loved ones? By my past, accomplishments, or dreams? Do I define myself by my affiliations, behaviors, or habits? By my body, appearance, or physical abilities or limitations? By my mind, intellect, education, awards, or degrees?"

I've already written about this a little bit.  If you use the tag cloud, hit "who am I" for prior related posts.  Illness has cast me adrift with regards to who I am.  It is too early in the CFS cycle to know if I am going to be one of the lucky ones that recover in 5 years or if I am going to be stuck like this for decades.  I'm totally resisting labeling myself as chronically ill.  I think this is in large part due to my husband having one foot out the door and I'm worried that if anything hints that this is a forever thing he is going to take off on me.

But I digress, who am I.  I know who I used to be.  Going by the above list I used to be:

• An accomplished adult figure skater that had passed three tests and won two medals in competition.  I was on track for the USFS Adult National Competition in a couple more years.
• I was one of the few highly accomplished fiber optic splicer on the east coast.  I understood fiber and could splice together complicated optic circuits that no one at my work place could duplicate.
• One of my scientific papers had been published and I gave a couple of successful talks.  One of which was later used as a training video.
• I was a mother that put the brakes on my career so that my kid would be able to have a healthy happy childhood.
• I am a graduate of Mount Holyoke College.  I'm smart even though my GPA wasn't spectacular.  While I am very good at calculus, I stink at foreign languages.
• I was happily married for twenty years.  This last year has been a bit of a struggle though.
• I was best friends with my husband for 25 years.  We are still working on getting back to that point.
• I come from a dysfunctional alcoholic household.  It took me years to sort myself out.  I was saved by the love of my husband, a good therapist and converting to Buddhism.
• I was born in England and grew up on Cape Cod.  I still have sand in my shoes and am most relaxed when I'm near water.  
• I was just getting my career back in gear when I got sick.  My son was about to leave for college and some opportunities were starting to present themselves for me to move up in the work place.  Management was taking an active interest in my work and were giving me more challenging assignments.  I was looking forward to the new work and a possible promotion.
• At the same time I was contemplating retiring in five years and possibly moving to Santa Fe.  That would depend upon multiple factors, chiefly how my new assignments went and how my husband's business was doing.
• While I'm good at art and music, I'm not very creative.  I can mimic and copy but not dream up bizzare novel things.  I'm better at putting odd ideas together in new useful ways.
• I'm fantastic at research.  I'm a true Renascence man: I'm a serial specialist.  I get interested in a subject and read everything I can on it until I understand it pretty well.  I then loose interest and move on to the next subject.  This cycle is typically two years to four years.
• Some areas I've delved into over the years include: finance, gardening, gourmet and vegetarian cooking, nutrition, yoga, figure skating, weight lifting, landscape design and currently CFS.
• I've been a member of Toastmasters, United States Figure Skating Association, Backyard Gardeners, W. Climate Action Project and a national association via work that I can't remember the name of right now.
• I've been over weight since puberty.  I've only gotten near my ideal weight twice and that required me to be in the gym three hours a day six days a week.  Something that isn't attainable as a married working mother.
• I eat pretty healthy organic wholesome food.  A far stretch from the SAD diet.  

So in summary: I was a smart, active, married, working mom that had a satisfying work and home life.

Now I'm not sure what I am.  Mostly I feel in limbo.  Like I said in my last post I live in the In Between.  I can't work.  I can't exercise.  I can't mom.  I can't wife.  Mostly I'm waiting.  Not sure for what.  A cure?  A miraculous recovery?  My old life back?  My old husband back?  (I miss him)  I'm waiting for something to get a bit better/easier.  I certainly can't do much.  I'm thinking of tinkering with my diet again but I'm limited with being unable to shop or some days even to cook.  I'm waiting to see my two CFS docs.  I'm waiting for a tip table test.  I'm waiting to recover from my Maine trip.  I'm waiting for someone to visit to break up the monotony.  I'm not happy with my days.  They are long and lonely.  Not that I could do anything.  Staving off boredom is the hardest thing with long term illness.  The days start to run together only broken up with visits to the doctor and crash days.  It all gets muddled together somehow and the boredom seems to overshadow everything.   I'm really not dealing very well with being sick.  Probably because I'm fighting it.  I can't move forward because I'm in denial.  I keep thinking I'll get better if I just behave.  If I just rest enough.  If I just eat the right foods.  If I see the right doctor.  If I take the right meds.

So I wait.  And I'm still fat.

The Chracter of CFS

Be more concerned with your character than your reputation, because your character is what you really are, while your reputation is merely what others think you are.

~John Wooden

In an earlier post I wrote that I felt like I had married into a dysfunctional family.  CFSers are yelling at each other demanding that we see things their way for whatever reason.  If we don't buy into their belief system we get yelled at.  Is this anyway to treat each other?  I don't like it.  It isn't helpful to me.  It makes me want to withdraw and not post here or on Facebook because I don't want to incur someone's wrath.  The stress makes me feel worse than I already do and I can ill afford that.

We each have our own beliefs surrounding our illnesses.   How we became ill.  What made us sicker.  What made us better.  I've heard everything from "drink raw milk" to "take antivirals" to "do nothing".  People are desperate. 

Because our illness beliefs aren't the same we also don't believe in the same cures.  Not having a scientific understanding of our illness doesn't help.  We don't know for reals what is making us this sick.  A virus?  A genetic defect?  Something we haven't discovered yet?  So everyone is left guessing including myself.  We are guessing at the cause, the how, the why.  We can't even settle on a name.  There is no consensus even among the experts so how can we, the laypeople, presume to know more.  I'm smart.  I used to work at MIT but I don't have a degree in virology.

Instead what I am finding is that a doctor has a theory; they put everything they have into that theory, research dollars and reputation and ego; they write papers/books; the sick, desperate for answers, read everything.  This is understandable.  I do it myself.   However, here is the kicker, each patient decides at some point which professional is correct.  They then join that doctor's camp and proceed to shoot arrows at everyone else.  Professional or patient it doesn't matter if you aren't in the same camp you get shot at.

I understand why this happens.  People are angry.  People have been abandoned by the medical community and family alike.  I get it.  However, I choose not to participate in this shooting match.  I have my own beliefs.  I'll continue to write about them here but I am probably going to continue to withdraw from Facebook CFS related stuff.  My blog isn't widely read and my readers seem to be the kinder sort.  Luckily I'm not part of the Twitterverse yet so I haven't become embroiled in any of those battles.   I'm too sick to participate in any of the negative stuff.

I am making a conscious decision not to shoot arrows.  I don't want to live a negative life.  I don't want to live a life arguing to defend anyone's camp.  It is too early in the scientific game to choose sides yet.   We don't have enough answers.  There is an old saying "you catch more flys with honey than vinegar".  I want to live a positive life.  I think we can do far more good by being kind and considerate and this applies to everyone, patients and professionals and even journalists.  I don't want to come across as angry pissed off person demanding stuff.  I can refuse but I can refuse in a polite respectful way.  This keeps things cordial and open for further negotiations.

So I am left with questions:
What do I want to do with my days?
How do I want to interact with the CFS world?
How much do I want to interact with the CFS world?
How much and what type of advocacy do I wish to participate in?

Guiding principles:
Do no harm: This includes patients, doctors, scientists and journalists.
Do not spread rumors.
Do not post anything that is unsubstantiated.  (backed up with verifiable medical evidence)
Clearly list when something is my opinion rather than fact.
Clearly state when I'm guessing.
Do not participate in pissing contests.
Do not post inflammatory articles or comments.

If you are curious, I'm currently in Dr. Bell's camp.  I believe CFS has a viral etiology.  I believe that virology is in its infancy as a science.  I believe most of what we know about viruses has come directly from the world of AIDS research which may not be applicable to CFS.  Due to my minirecovery while on steroids I believe there is a strong inflammatory component to my symptoms.  This would also explain that anything we do to reduce inflammation makes us feel a tad better.  I am guessing that our cure may include both an anti-inflammatory and an antiviral or antibacterial treatment.  My belief right now is that I have caught a virus and it is causing inflammation in my brain and/or spine which is resulting in my symptoms.   However, without any science to back me up I could be totally wrong. 

I also believe that if I live a joyful life I have a better shot at recovery.  I also refuse to become a bitter old crankpot.  Life has too much joy in it.  There is too much good in the world for that.  So, I'm going to try to lead a more positive life.

Newton's Law

A body at rest stays at rest
A body in motion stays in motion
unless acted upon by an outside force.

This is Newton's First Law of Motion taught to every physics student.  I guess I need to find more force since my body is tending to stay at rest these days.  I miss moving.  I miss using my body.  I miss walking.  I miss running.  I miss skating fast.  I miss dancing.  I miss hiking.  OMG I miss just stretching. 

I never thought of myself as an athlete, specially since I was never particularly good at anything and I have been chubby since I hit puberty.  However, looking back on my life now that I'm spending most days in bed or on the couch, I realize that while I never quite qualified for the term athlete I was active.  I was always involved in movement and it started when I was very young.

Figure Skating:  as soon as I could stand up Mum and Dad strapped double runners on my feet and took me on the ice.  It was love at first sight.  I don't remember learning how to skate.  It is something that comes as natural as walking to me.  I've started formal lessons when I was 6 or 7 and continued until I was until 15 or 16.  Although I quit formal lessons I remained on the ice regularly until I went to college.  I even started formal lessons again as an adult.  I passed three tests and won two medals before becoming ill.

Ballet: started when I was 5 or 6 and continued until I was 10 or 11 after starting en pointe work.  I took a course in college for a semester which I enjoyed immensely and have taken the occasional class as an adult.  It is a sport that I would love to take up again.

Gymnastics: another sport that I loved as a kid but wasn't very good at.  I participated during middle school and even took group lessons at a gym but decided to pursue ice skating instead.

Aerobics: this wasn't around when I was a kid but I took it up after I left college.  I've taken classes on and off for years and got quite good at step aerobics.  My favorite class was taught by an exdancer who would string dance steps together one at a time until she had the entire class dancing a routine lasting several minutes.  We all had a blast.

Swimming:  my Dad taught me how to swim when I was about 8 and growing up on Cape Cod I spent every summer in or on the water.  When I went off to college I spent all four years in the pool swimming laps.  I have done lap swimming on and off as an adult but haven't gone since my car accidents a few years back screwed up my neck and shoulders making swimming painful.

Sailing: again I took lessons as a kid and spent my summers on or in the water.  I never pursued this as an adult although I liked it a lot.

Weight Lifting: I learned this a few years before my son was born so I've been doing this on and off for about 20 years now.  I even lifted through most of my pregnancy back when women weren't supposed to exercise while carrying.  I just didn't tell my doctor about it and took several precautions to prevent any injuries.

Other sports I've done over the years:
Canoeing
Kayaking
Horseback riding
Speedskating (love that one and would love to take formal lessons for long track)
Rollerblading
Hiking
Yoga (did restorative yoga for over three years and really enjoyed it)
Tap dancing
Jazz dance
Cross Country Skiing (did this all through college after I learned for a geology field trip)
Downhill skiing (didn't like this as much as xcountry)

Sports that I still want to try but haven't had the time:
Speedskating long track
Diving
Scuba diving
Backcountry survival
Orienteering
Equitreking
Synchronized Skating
High mountain hiking/camping

I miss my visceral life.  I no longer DO anything.  Not only have I lost sports but I've lost cooking, sewing and even cleaning my house.  Instead, I connect to the world through my computer keyboard.  I live a vicarious life now through books, movies, radio and the internet.  I want to be able to DO things again.  I want to touch, move, jump and feel.  I want to hear and yell and taste.  I want to be in motion and never stop.

Beauty and the Chronic Beast

BlogHer just started a beauty campaign to take back the definition of beauty from the fashion industry and make it our own again.  This got me thinking can we be beautiful and chronically ill at the same time?   After all here in the US we are supposed to be young, skinny and athletic; practically the antithesis of what happens when you have CFS.  I'm almost 50, a devoted sofa sloth, 230lbs and growing.  I'm not going to be in the swimsuit edition of Sport Illustrated in this lifetime or quite possibly the next.

Since becoming chronically ill I've gain weight.  And it isn't as simple as 10-15 of scale weight.  I lost muscle mass and therefore gained even more fat than the ten pounds the scale says I've put on.  It is easier to say that I can no longer fit in my "fat" clothes from when I was well.  I'm down to my stretchy yoga pants ladies!  Ugh.

I no longer am capable of shaving.  Face it I'm nearing 50.   For those of you who are younger us older gals start growing facial hair at an alarming rate.  If I don't shave daily I start to have a noticeable mustache and don't even mention my gorilla legs.  Right now I'm lucky if I manage to shampoo my hair and get soap on 80% of my body.  The act of shaving anything is currently way beyond my capacity to manage.

I often have to skip showers altogether because I just don't have the energy, like tonight.  I went shopping and helped prepare dinner instead of attending to my personal grooming.  It is amazing how fast my hair gets stringy.  I'm drooling over the new adds for waterless shampoo.  Next time I manage to get to a drug store I'm buying a case load of the stuff.  If I get desperate enough I'll get it through Amazon.  Yeah!  Now if I could only remember the name of the stuff....

I haven't had a haircut since early March.  I had such a cute short haircut at Christmas.  I loved that haircut.  Everyone complimented me on it.  Now my hair is down to my shoulders and constantly falling in my eyes, which drives me batty.  So now I do the old lady thing and pin it back with hairpins.  I no longer look young and hip.  My grey hair shows when I wear it pinned back like this.  My cute haircut somehow magically hid most of my grey.  Now I look like a chubby 60 year old instead of a hip 40 something.

So ladies is it possible to be sick and beautiful?  I think it is if you change the definition.  I still have my sense of humor on most days.  I'm still kind and considerate on most days.  Right now I don't really care what I look like as long as I can shower and have clean hair. 

My husband said the most oddly kind thing to me last night, "If you were an angry alcoholic and this sick I would leave you in a heartbeat.  But, you are kind so I'm going to stay."  I still feel a little weirded out by this statement but I keep going back to the fact that he just told me that I was so kind that he is willing to stick out all the ickyness of chronic illness and he didn't want to give me up.  That is kind of cool.  I guess he likes my inner beauty and that is the best kind because it can't be taken away by chronic illness.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
CFS? Right now I have the diagnosis of mono but my primary says my symptoms don't match up so I'm heading to another specialist in a couple of weeks.

2. I was diagnosed with it in the year:
2010 hopefully

3. But I had symptoms since:
May 2010, I'm new to this

4. The biggest adjustment I’ve had to make is:
Not being able to do ANYTHING

5. Most people assume:
If I just _____ I'll get better.

6. The hardest part about mornings are:
Finding a reason to get out of bed.

7. My favorite medical TV show is:
House

8. A gadget I couldn’t live without is:
Computer with an internet connection: it is my link to the outside world

9. The hardest part about nights are:
I like nights. I usually feel pretty normal after my late afternoon/early evening rest session. The house is quiet and I can putter around or watch what I want on TV without having to worry about others.

10. Each day I take __ pills & vitamins. (No comments, please)
No meds. I tried taking a fist full of vitamins for several weeks but when they didn't do anything I stopped.

11. Regarding alternative treatments I:
Am currently using chiropractic and acupuncture. I am considering naturopathy and osteopathy.

12. If I had to choose between an invisible illness or visible I would choose:
Visible. The last time I had a protracted invisible illness my supervisor at an old job (not my present one) gave me crap for only working part time when another guy came in even though he was having chemo treatments at the time. I haven't let my current supervisor know what I have. I have been working through HR to keep a lid on it.

13. Regarding working and career:
I have been out of work for four months now. I have been replaced by others on all programs I used to work on. I have lost my office so that if I ever go back I will have to unpack a stack of moving boxes. I'll be lucky if I have a computer desk and a bookcase. I have probably killed my career dead even if I make it back to work. When people get really ill there no one wants to work with you since you are now "unreliable".

14. People would be surprised to know:
I was in the middle of my first ever figure skating competitive season when I got ill. I won a bronze and a silver medal and had one more competition to go. I was planning on skating with my mom in the adult week ice show in Lake Placid this summer.

15. The hardest thing to accept about my new reality has been:
Boredom. I'm 80% housebound and spend most of the day laying down. What the heck can I do with my time when I can't do anything?

16. Something I never thought I could do with my illness that I did was:
Learn to relax properly.

17. The commercials about my illness:
Since there is no cure for CFS there are no pills to advertise yet.

18. Something I really miss doing since I was diagnosed is:
Skating

19. It was really hard to have to give up:
Eating desserts. Since I am not exercising at all I am gaining weight even though I am eating way less food and have an ultra healthy diet. My body needs exercise to maintain its weight and I just can't do it.

20. A new hobby I have taken up since my diagnosis is:
Blogging in multiple blogs

21. If I could have one day of feeling normal again I would:
Drive to Lake Placid and skate with my mom and sister.

22. My illness has taught me:
Patience and how to say no

23. Want to know a secret? One thing people say that gets under my skin is:
Have you tried ____? It should fix _____.

24. But I love it when people:
Tell me they miss me.

25. My favorite motto, scripture, quote that gets me through tough times is:
"Barn's burned now, now I can see the moon." -Masahide

26. When someone is diagnosed I’d like to tell them:
There are two new studies out showing a link between CFS and viruses. Maybe they might just figure this out and we'll have some antiviral drug protocols within a few years.

27. Something that has surprised me about living with an illness is:
How cranky my husband gets. How great my kid is.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Sent me a Tibetan Healing Bell CD which he recorded. It helps me sleep.

29. I’m involved with Invisible Illness Week because:
I'm an advocate at heart and we need to make ourselves visible even if we are housebound.

30. The fact that you read this list makes me feel:
Proud. Maybe this blogging thing will get the word out and help others.

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.

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?

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

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.

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.

In the Begining

I first fell ill May 6, 2010. I caught some virus from my kid. It was a new one. One that neither of us had ever had before. It hit us hard. My kid doesn't usually get sick and it felled him and then myself. Extreamly sore throat, exhaustion. We were both popping asperin and using sore throat spray to numb the pain so we could swallow our own spit. I kept waiting for the cold to come. The stuffy head and runny nose but it never came. We were both well again within four days. My kid returned to school and I returned to work.

Three days later I went ice skating. I had a competition coming up and I needed to get in my practice. I had a great practice Friday although I still felt a bit off. I skated my program through a couple of times and broke a nice sweat. Saturday I felt like I had been hit by a bus. It was like having the flu. I ached every where. I was freezing cold to the point of my teeth chattering even though it was 70F out. My throat was on fire again. I spent the next several days in bed again. My doc put me on antibiotics and I stayed home for the week. I don't know if it was the rest or the pills but I was feeling okay by Friday, which was lucky because my friend had flown in from Seattle for our college reunion. We drove out to the reunion and had a great weekend despite my sore throat. I was eating lozengers like they were candy.

Another week back at work and it was time to skate again. I had gone skating during the week but felt weak and out of it so I did a light workout rather than my usual full tilt workout. But, the competition was looming and I had to start doing run throughs again. Saturday I blessedly found some near empty ice and worked my butt off. Again I worked up a great sweat. I had lost some of my stamina and was wondering if I would regain it prior to the competition. However, Sunday I again woke up feeling like I had the flu. My sore throat and fever was back. This time I was also nauseous and dizzy. I got so cold that I was shaking and my husband put me to bed with four blankets on top of me. Typically I only sleep with one and it was a nice warm 70F out. Me, I couldn't get warm. I stayed home another week. I went back on a second antibiotic which didn't help. I was sleeping 12+ hours a night and takign multiple naps during the day. I couldn't stay awake for more than a few hours at a time. My acupuncturist put me on a diet of double boiled rice. Although that sounds unappatizing I was nausous and had no appitite and was forcing myself to eat. I was loosing weight rapidly so the rice didn't sound like a bad idea.

I stayed home a second week and a third. I was slowly getting my appitite back. I could eat plain foods and trips to the organic market became part of my route home from my acupunture sessions. I was eating mostly fruit and vegetables with boiled eggs, chicken and salmon for my proteins. Rice was it for carbs. Anything else made me nausous.

By the forth week, I had settled into a routine of laying on the couch covered in blankets despite the warm weather watching movies. My brain was too foggy to read. I couldn't seem to hold two thoughts together and movies helped to keep my mind busy. I spread my appointments out over the week. I couldn't handle more than one a day. My sore throat now only flared back up when I got tired. I managed to make a boiled egg and toast breakfast and a simple vegetable soup lunch before retreating to the couch completely drained. I craved ginger so I added ginger ale to my drink list and turned my soup into a Japanese style broth with chicken, tofu or salmon, rice noodles with chopped cabbage and mushrooms. A dash of garlic, a dash of ginger and splash of wheat free soy sauce made for a tasty and tolerable dish. I couldn't handle making dinner.

Slowly I gained ground. I stopped napping during the day. Twelve hours of sleep dropped to eleven and then to ten. I could add an occassional shower. I didn't need as many blankets. I could read a little bit. I could sit at the computer for a while. I could sit out on the deck for a bit. I felt well enough to add the chiropractor to my list of office visits. After two months I managed to make simple dinners every other day or so. I even managed dinner for company when my husband's friend came for a visit. I was getting better it was just slow. I even started toying with the ideas of getting back on the ice and getting back to work.

Then I was unexpectedly felled again. It came out of the blue. Being a girl I have cycles. Well, for some reason this one knocked my flat on my butt. I was back to sleeping 12+ hours a day. Taking naps during the day and not having the energy to do anything. What the hell happened? Why was this cycle different?

Now several weeks later. I'm not back to where I was that wonderful Sunday when I made dinner for our guest. I can function on 8-10 hours of sleep with no nap. I can make breakfast and lunch, take a shower and go to one appointment but that is about my limit. I get dizzy and nausous if I do more. My sore throat seems to be a thing of the past but I still get fevers of 99-100F fairly regularly. My days are now split up into three pieces. Morning:get up, eat, shower, go to an appointment, eat. Afternoon: lie down for 4 hours. Evening: get up, eat dinner, watch movies or read.

I'm wondering if I'll ever get better or if this is truely chronic. I just got sent to the virologist. He is doing more tests. I'll get to the tests in a later blog. What in hell is happening to me?