Apartment Shopping

Lately whenever I get really pissed at hubs I start online apartment shopping.  Lately it has become almost an obsession.  I can very clearly picture myself walking into an empty modern loft apartment with nothing.  Absolutely nothing.  No clothes.  No furniture.  No books!  Nothing.  I am there to start my life over.  A new beginning.  A new life from scratch.  

Thing is I just realized that what I'm really after is walking away from my current life.  I want to run away.  I'm so tired of it.  The illness.  The lack of friends.  The lack of family support.  I'm tired of trying to figure things out.  While I'm very very busy trying to learn biology and a way to fiddle with my supplements so that I get even slightly better, my marriage is dissolving into a puddle.  I'm so busy trying to fix me that my marriage is failing.  I don't know how to fix that either.  I can't fix me and I can't fix my marriage so I just want to run away and start over.  From scratch.  Maybe I'll do better next time.

Of course when I realized all this I knew it was impossible.  You can't run away.  Problems have a nasty habit of following you.  I won't get better by moving.  I might get slightly better if mold is involved in my illness but that is a risk.  And I could move with my husband instead of striking out on my own which is this fantasy.  He is never a part of it.  I'm on my own.  

The horrid reality is that I am not well enough to live on my own.  I'm too sick.  I can't walk away.  I can't even pack.  Heck I can't even plan.  On my best days I manage to make both breakfast AND dinner instead of collapsing in a heap by 4pm.  I can't clean.  I can't do laundry.  I can't do dishes.  I can barely cook.  I can't run away.  Hell I can't even walk away.  I need to be pushed in a wheelchair.  

Not sure where this leaves me.  I like my fantasy that I've woven together.  I love the idea of starting over.  Reality bites.  I'm in limbo for now.  

Purpose

I've been out of sorts this week.  I know I'm doing better physically since I am amazingly bored.  I'm at that in between stage where I'm too sick to do anything but well enough to want to do stuff.  I really thought that this was just boredom but this evening I suspect it is something else....

A feeling of profound purposelessness came over me.  I used to set goals for myself: taking new classes, learning new subjects, getting pins at Toastmasters, passing tests in skating, putting in plants to improve the garden.  I can't do any of this now.  Not just physically but mentally.  I've been trying to learn about the methylation cycle and it is just too much for my brain.  I'm really trying.  I used to be really really smart so this is just killing me.

The last couple of days I've just given up.  All I've been doing is getting up, plopping onto the couch and hanging out on the internet all day.  The only time I get up is to prep food.  I have no motivation and really am just sinking in to despair.  I don't like this.  I'm not sure if it is just a chemical imbalance or a real crisis.  Maybe a bit of both.  More than likely I'll slouch around until my energy levels come up and then I'll be able to do stuff again and this will pass.  But in the meantime I'm going to mope a lot.

Baby Girl

Baby Girl is one of the many pet names I had for my cat, Samantha or Sam for short.  I adopted her and her sister, Brillo, in 2001 as kittens so she would have been 13 sometime this year.  Since she and her sister were rescues, we were never sure of their exact age.

They were both great cats.  We lost Brillo to a tumor in 2011.  It detached from her liver and she was bleeding out internally.  I came down with CFS/ME in 2010 and 2011 was one of my worst years with the illness so I couldn't go the hospital with her after she flopped at my feet in obvious distress.  My son held her as she was put to sleep by the hospital staff.

Two weeks ago we lost Sam to colon cancer.  I knew she wasn't doing well this past year.  She had stopped climbing on the couch and I had to put a footstool next to her favorite chair to make it easier for her to climb onto it.  Sam has been my constant companion throughout my illness.  When I first got sick she would lie at my feet all day, keeping me warm and keeping me company.  If I laid in bed too long she would come a yell at me to get up or if I was doing badly she would check up on me before lying down near me to keep me company.

When my son moved out to go to college, she and I were the only two in the house during work hours and we became almost inseparable.  She would follow me from room to room, settling down whenever I sat down.  I have a kitty hammock that I put next to the couch so no matter what room I was in she was near me, either next to me on the couch, in her own chair, in her kitty hammock or on the bedroom floor near my bed.   She would wait for me outside the bathroom door and say hello to me upon my return from adventures in the great wide world.  She demanded to be cuddled for about an hour each day and would lead me around the house to the spot of her choosing.  In our own way, we had figured out how to communicate with each other.  She could let me know if she wanted petting, wanted dry food, wanted table scraps, wanted a clean box, etc.  I only wish she could have told me that she wasn't feeling well.  I had put it down to old age and her bum leg from an injury she sustained as a young cat. I've never had a cat this old before and didn't know her behavior was abnormal.

By the time she started throwing up after trying to go to the bathroom it was too late.  There was a huge mass in her colon and she could no longer go potty.  I had to make the horrible decision to put her to sleep.  I feel like I let her down.  That I didn't care of her after she spent the last four years taking such good care of me.  I am so very sorry for not catching this earlier.  I feel that I should have known.  That I should have seen it.  That I should have taken her to the vet earlier.  But I was so wrapped up in my own illness I kept putting it off.  She hated the vet so much it was a huge ordeal to get her into the carrier and over there that we hadn't even taken her for her annual checkup for a couple of years.  I really do feel responsible for her getting sick and then having to put her to sleep.

I still cry every day for her and it has been three weeks since she got sick and two weeks since I put her to sleep.  I know it was the best thing for her but I miss her so very much and feel very very guilty.

Christmas Card Blues

Christmas has never really been a great holiday for me.  My dad would often lock himself in the bedroom and stay drunk for the entire three days we spent celebrating.  My sister, mother and I combated this by trying really hard to support each other and make each other happy.  Since we emigrated from the UK to the US, we had no relatives near us to celebrate with.  Parcels and cards crossed the ocean but transatlantic phone calls were expensive and notoriously hard to connect (we would sit at the phone dialing and redailing the numbers until it would finally go through) so for the most part we were on our own.

Don't get me wrong, as long as dad was locked away for the duration, the holiday was quite nice.  We baked together, went caroling with our friends from school, went to a neighbor's party every year and bought each other the best presents we could afford.  I do have a lot of good memories from that time period.

Then marriages happened and this broke our little gang up.  We had to travel all over the state to visit all the different families.  Over the years this settled into Christmas eve with hub's family, Christmas day by ourselves and Boxing Day with my family.  It worked great until hub's family had a monumental blowout and everyone stopped talking to each other.  Then shit got weird.  And lonely.  Things deteriorated even more when I got in a fight with my mom and sister and they stopped talking to me for a few years.  

Due to hubs being a sound guy, he was inevitably working during the holiday season so he wasn't around to do anything.  My mom and sister moved far away so I couldn't see them anymore.  So no more going out to do Christmas stuff.  I wasn't near anyone and we were barely speaking so I didn't know what presents to get anyone.  I didn't get to go to parties.  No more wrapping presents with my sister and mom until the wee hours of the morning while drinking sherry.  I was really by myself for a while.  And I was really miserable around the holidays.  It got so bad I quit decorating the house.  I seemed to be the only one that cared about Christmas and hubs and kid wanted nothing to do with it so I quit.  I went on Christmas strike for many years.  

It got so bad I started putting up a metal lawn ornament Christmas tree instead of a real one.  I called it my minimalist tree.  It was painted white metal with small white lights.  I added sky blue balls and called it a day.  The only parties I went to were office ones.  We had never stayed in one place long enough for me to make real friends anywhere.  I moved on average every year for almost ten years running.  Hubs HATED Christmas music so I couldn't even play it in the house never mind go to a concert or go caroling.  I don't blame him.  He did two to three shows a day of Pop's Christmas shows for two to three months in a row for ten years.  I would hate the stuff too if I had to listen to that.  But I missed going out to do Christmas stuff.

However, one thing I did do was send out cards.  It made me feel loved to get all those cards back.  I hated sitting down to make them out, but man did I LOVE getting ones in the mail.  Because I did this every year I was still sending cards to people I worked with decades prior.  It was often the only contact I had with these old acquaintances.  

Since I've been sick, I haven't been able to send cards for a couple of years now.  I did manage to get out New Year's cards with short notes in them last year but I missed a couple of years prior to that.  I was just too sick to sit at a table for long enough to write out cards.  It is amazing how many people don't send one if you don't send them one.  I've been too sick to notice or care until this year.  This year I've been putting off writing cards. Cards are bothering me on several levels.    

Unlike Americans, I keep cards.  I'm from a traditional Victorian family and we save all of our correspondence.  It used to be the done thing.  I must say that it is a real pleasure to read over a letter that is ten or twenty years old or run across a letter from a deceased relative.  This is one of the few things I worry about with the invention of the internet and email.  That body of correspondence that brought personal pleasure and a source of historical information is gone in the ether.    But I digress...

Last year my son and husband decided that we needed to decorate for Christmas.  Hubs brought home a tree from a tree farm.  My kid put up the decorations.  I sat and marveled at the whole thing.  We went for a drive to look at the Christmas lights our neighbors put up.  And Christmas turned out pretty good despite my trip to the ER later that night.

This year I'm well enough that I want to decorate and do cards.  However, trying to get hubs, kid and me to do something together at the same time is like herding cats.  It just doesn't go well.  The weekend I was looking forward to buying a tree, putting it up and decorating it with hubs and kid, I was well enough to participate.  I came out of the bedroom to find hubs had taken his work vehicle apart and was in the middle of installing a widget on it.  Kid was on the Xbox and didn't want any human contact because he had just finished finals.  When we finally got into a vehicle to get a tree, it was dark.  I was looking forward to going to a nice large place where we could wander around and look at a variety of trees and pick out something nice.  Hubs literally drove us around the corner to a small nursery where he heard they had cheap trees.  They only had a few out of their wrappings and they hadn't been standing upright so the limbs hadn't dropped and you couldn't tell their shape.  Since we were the only ones there, the kid running the stand was picking out trees for us to look at and it was about ten degrees outside.  I didn't want to be the picky female so I agreed to the second tree that the kid picked up that hubs liked.  I climbed into the car while hubs paid and kid strapped it to the roof for the half mile trip back home.  The entire process took about 20 minutes.  Hubs pulled into the gas station to take a family photo for me to post to Facebook of us getting our tree.  Insert rude noise here.  The pic is still on my kid's phone.

The poor tree spent the next three days upside the garage.  It got covered in snow and then ice.  Hubs finally brought it into the garage so it could melt before being brought into the house.  It took another week for hubs to get lights on to it.  On one of my good days where I wasn't doing something else, I managed to go through the Christmas ornaments and sort which ones we were keeping and which ones were getting pitched.  I haven't been well enough to do this for years.  This is my fourth Christmas with CFS.  Ugh.  Then a snowstorm hit which put me in bed.  Then a doctor's appointment.  Then another snow storm.  The tree still isn't decorated and I'm very sad about it.  I does look good with the lights on though.  I'm happy that we have a nice tree.  

I still haven't done cards though.  I'm putting it off.  While unpacking the ornaments I found a card from hub's mom.  It was from ten years ago and she said that she was looking forward to coming over for Christmas dinner and seeing us.  She passed away the year before I got sick.  I cried and cried.  I miss her.  I miss spending holidays with her.  

Yesterday, I saw a Facebook post that my friend from college was laid to rest on campus.  A small group of fellow students went there with the family to spread some of her ashes under the trees next to the lake.  I cried some more.  I will miss her too.

I miss so much.  I miss baking with my sister.  I miss wrapping presents with my mom and sister.  I miss having large family dinner with hubs mom and my family all crammed around my small dinner table eating off family heirloom fine china.  I miss going to huge family gatherings.  I miss going to Christmas parties.  I miss having so many people over that I have to set up a kids table.  I miss having the house festooned with decorations.  

I sat down to write cards today.  I went through my Rolodex.  It is sad how many people no longer contact me since I got sick.  People I had considered friends but have left to go on with their active lifestyles.  Family that has passed away.  Friends that have passed away.  This year is weird to me.  It is a season of loss but at the same time I'm also letting go of that Rockwell painting in my head.  That perfect family that doesn't exit.  It has never existed.  I can feel the holiday shifting beneath me.  I'm grieving my losses but at the same time celebrating my many small victories.  I'm doing so much better than last year at this time.  This whole year has been better for me from a health perspective.  My marriage is doing better and is slowly healing.  My relationship with my son is getting deeper and we find ourselves talking often about all sorts of subjects including very personal ones.  I have a great new car.  I'm walking short distances.  I have all sorts of cool internet friends.  All I need is a party to go to.  

I'm going to write some cards now.  I feel a bit better after writing this long missive.  I hadn't intended it to get this long but once I started, it all had to come out.  Looking at the bright side I only have a handful of cards to write.  This won't take long.  Peace out!

Happy Car Sad Car

Happy car: sad car.
Well car: sick car.

I figured out what has been bugging me about buying the new car and giving up my old one.  It is another loss to CFS/ME.  My old car represented freedom.  I traveled to work.  I drove to Toastmasters meetings and contests and conferences all over the state.  I drove to garden club meetings and garden parties.  I loaded up gardening club members and we filled the trunk with plants and soil and rocks for our gardens. I drove to college reunions and to the airport.  I drove to Lake Placid several times by myself to spend a week figure skating with my Mom.  We went on family vacations all over New England in it.  I drove to figure skating practice, ice shows and tests.  I drove to the gym and to restaurants.  It was my well car.  My gateway to freedom to roam this planet as I wished.  I have lots of happy memories in that car.  I taught my son to drive in that car.

My new car is gorgeous.  However, I keep crying when I think of leaving my old car at the dealership never to be seen again.  My new car is my sick car.  The one that I had to fit my wheelchair in instead of my gardening supplies and figure skates.  The new car had to fit all three drivers so that I can have my family chauffeur me around because I can't drive myself most days.  The new car had to have a soft ride so that it didn't aggravate my neuro symptoms and leave me unable to walk or talk after a road trip.  The new car had to have easy steering so I can turn the wheel with little effort so that on the odd occasion I do drive it isn't physically tiring for me.  My new car is my sick car.  The one I was forced to buy because of the circumstances forced upon me by CFS/ME.  My life is becoming circumscribed by my illness and I don't like no matter how pretty my new car is.

So while I like my new car and admire its engineering, I also hate it.  Nah...  Hate is too strong a word; maybe dislike is better.  I dislike my new car.  It is shiny and new and pretty and smooth and big but I miss my old car even though it was broken.  I miss it even though the power steering would cut out mid turn and a string of obscenity would fly out of my son.  I miss it even though the passenger seat is stained from spilled milk shakes and coffees.  I miss it even though the rear seats are stained from the wet butts of my kid's BB rifle team after playing in the rain.  I miss it even though it is scratched and pitted and dented.  However, I know where each of those scratches and dents came from: my son scraping ice off my hood with a broom; me trying to squeeze down a too narrow road and having a bush scrape the length of my car; the little dent in the bumper from the lady rear ending me when I was sitting at a stop light on my way to work and she was on her cell phone.  These are the memories of freedom.  Memories of my life before CFS/ME.  My well car.  My happy car.

Eventually my new car might become my happy car.  We'll go on family trips and spill crap in the seats and dent it and ding it.  New memories will be made.  At this juncture I'm dubious.  I don't know which way things will go.  Happy or sad.  So right now; right this minute; it is my sad car: my sick car.  Hopefully that will change.

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.

In Memoriam

My friend from college passed from this world today after a battle with cancer.  This is my first friend that has passed.  Oh there have been funerals.  Many many funerals but they have all been either family or friends of family.  Most of them quite old who passed after living long full lives.  My friend who passed today was a year younger than me.  She was a lovely lovely lady.  She touched everyone with her kindness and generosity.  She will be missed greatly.

I am struck by sheer exhaustion and physical pain from grief and stress.  The one glimmer of hope I had today was realizing that my son's health has improved greatly since last week.  The antibiotics are working.  He is feeling much better but is still a bit off.  He still can't exercise much and the heat bothers him greatly.  However, he is miles better compared to last week.

So it is with mixed feelings that I head for bed tonight.  Tired.  Sore.  Happy.  Sad.  Grief stricken.  Hopeful.  Tomorrow is another day and the heat wave will have passed.  Things will improve.  Goodnight my dear friend.

Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain,
I am the gentle autumn rain.

When you awaken in the morning's hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there, I did not die.

Mary Frye, American poet (1904 - 2004)

The Straw

This last piece of news was just too much.  I'm descending into a huge huge sad.  I won't know if it is going to hang around and officially become depression.  I'll have to wait and see on that front but right now I just keep breaking out into tears.

I watched the Texas senate live the other night.  I witnessed senators quoting the bible as THE argument for why this bill should be made into law in the United States of America: a country that was founded squarely on the separation of church and state in order to avoid things like this; one religion becoming the law of the land resulting in one person's beliefs being forced upon another of a different faith.  I witnessed the senators shut down the session and open it up again (before midnight) claiming that it was the next day so that they could legally vote to pass the bill to severely restrict women's access to a safe medical procedure.  Before the vote they prayed for God's guidance.  Afterwards, I witnessed one of the sit down protesters get picked up and body slammed into the marble floor so hard that it knocked him out cold.  He came too not being able to feel his hands and feet with his head in a pool of his own blood.  He was released from the hospital with a concussion the following day.  I shake my head and wonder what this world is coming too.

The following day I hear that Zimmerman was acquitted of all charges.  I wasn't at the trial.  I didn't see the evidence.  I don't understand the law involved.  However, this still doesn't seem right.  To me this seems like an uneven handed metering of a law that shouldn't be on the books anyway.  Stand Your Ground was written up and pushed by ALEC and spread via the republican party with the full backing of the NRA.  How could this not result in violence?  How could this not result in racial tension?  What can we possibly do to change this?

Then shit got personal.
My son had a headache and neckache since Wednesday.  He thought his neck was out of alignment so came with me to my awesome chiropractor for an adjustment on Thursday.  Friday he woke up with a splitting headache and thought it was from the adjustment but now a fever had kicked in.   I let him sleep in Saturday thinking that he just needed some rest and he would be fine.  After he did get up he offered to take me to the farmers market per usual but he was still having headache neckache problems but now he was having dizzy spells as well.  Thing is he isn't a complainer so he behaves normally.  When we finally got home we both took naps.  Neither of us felt like cooking so we went out.  He was constantly playing with his neck trying to stretch it.  His fever was back.

About an hour after hubs went to bed my son came down from his room and told me that he needed to go to the hospital.  When he says this. it is SERIOUS.  He never ever ever complains.  He has been like this since he was a baby.  So he calls his doc to get permission to head into the ER, while I get hubs up to drive him over.   Meanwhile I had no idea that kid had begun to feel woozy.  Like he had had several drinks when he hadn't had any alcohol in days. Inn the meantime hubs starts throwing a grand mal hissy fit in the middle of the living room.  Why is it HE has to deal with this?  Why is it always HIS responsibility to pick up the pieces?  It got the point where kid just yelled "FINE.  I'll f^ing drive myself to the hospital!!" Then went back to trying to talk to the doc on the phone.  Hubs quiets down and drives kid over there and they start testing him for meningitis.  This involved blood draw, CT scan and a lumbar puncture.  In the middle of this, he starts texting me so that I know what is going on.  After four hours there, the doc decide that he has erlichiosis from a Lone Star tick bite he got three weeks ago during an airsoft game in a farmer's field.  The doc said it was very good that he got into the ER when he did or his kidneys would have shut down from the infection.  They pumped him full of antibiotics, saline and pain meds and sent him home with a scrip for doxycycline.

Now I'm on my freak bus.  Every time he comes down with a virus I get scared he will get CFS like me. It hit me out of the blue.  It tends to run in families.  Erlichiosis can linger in the body.  This tick can also transmit Rocky Mountain Spotted Fever which is a known CFS trigger.  So I'm worried.  I'll continue to worry until his is well and back to his old self.

The Straw
While all of the above has affected my mood greatly, I didn't start my decent into the deep deep black well of sadness until today.  Today I found out that a friend of mine from college is dying from cancer.  She lives in Puerto Rico so I haven't seen her since the year that I got sick with CFS.  I attended my class reunion during the infancy of my illness.  We marched in the alum parade together.  She invited me to visit her in PR when I got well enough to travel.  She hosted a reunion earlier this year for my class to celebrate all of us turning 50.  I heard it was a blast.  Now her family is traveling down there to be with her for what is probably her last days.

This is just too much.  I am so sad.  She is a wonderful wonderful woman.  I was so looking forward to traveling there to visit with her.  I miss her posting pictures of her painted toe nails in various settings.  It became a running gag.  She would paint them a wild color and then when she posted about a trip somewhere she would post a pic of her brilliantly painted toes enjoying the trip.  She is just a lovely person.  And I am very very sad.

Bathing Suits

Oh how I wish I were a guy.  Bathing suits would be so easy.  Just answer a short list of questions and poof you go home with a new suit:

1. Does it fit?
2. Do I like the color and pattern?
3. Does it suit my needs?  Lap swimming?  Surfing?  Hanging with my buds?
4. Do I want to show off my junk or hide it?

D.O.N.E.

But noooooo....

I'm a girl and bathing suits and I have a long and sordid history together.  

One of my earliest memories is paddling in the kiddie pool with my sister and mother in one of the many public swimming pools in England.  Back then things were simple.  Did I like the color and pattern of the suit?  Yes.  Poof new bathing suit.  

This lasted for many years.  Paddling with my mom and sis when I was really little.  Swimming lessons with my dad in the hotel pool on Cape Cod just after we emigrated to the US.  Swimming lessons from the lifeguard in the tidal river down the street from my house.  All was well until one day, I was diving off the docks into the tidal river with my friends.  I was in a two piece suit and dove in headfirst.  The bottom half of my suit came off my bum.  Luckily it got stuck around my ankles and I was able to pull it back up before anyone could see me.  I was mortified.  That was the last time I ever wore a two piece suit.

My favorite suit back in those days was a fuzzy orange one.  I liked it because it was a one piece and because the fuzz kept me warm so I could stay in the water longer before needing to come out and sit in the sun to warm myself up.  I LOVED being in the water.  My sister and I spent every single summer day in and around the water.  If it wasn't at the local beach with family or friends, it was in the local motel pool where my mum worked as a chamber maid.  She said we swam like fish.  We spent as much time underwater as above.

Suits were fairly easy to shop for back then.  I was a standard size.  They didn't have all the fancy cuts and patterns yet.  You picked one piece or two piece and a color you liked.  There really wasn't much variety.  It became a ritual.  Each year sometime in the spring my sister, mother and I went bathing suit shopping.  We would each find a suit that would be worn that year.  It was a thing.

I went off to college and took real swimming lessons from a real swimming coach and I learned all the details of proper lap swimming.  All four years I swam laps in the pool at college and if I were home I swam laps in the ocean.  I don't remember much bathing suit angst back then.  I always got a once piece that was practical for lap swimming.  I usually went suit shopping with either my sister or mother or both.  I rarely went by myself.  It is a girl thing.  You have to have someone with you in the fitting room to let you know which suit looks best on you.

As I got older and fatter things started to get weird.  Each time I moved I sought out a gym that had a pool so I could continue swimming even if I didn't have access to the ocean.  I love being in the water and I found lap swimming to be very relaxing.  But now that I was older and out of school I was working in offices or labs at a desk all day.  I got bigger and bigger and eventually I got too big for the regular size suits.  I had to go to the plus size department.  The suits had gotten fancy by this point; wraps, plunging necklines, various cutouts.  To boot, plus size swim suits were really for sunbathing or paddling not hard core lap swimming.  Suit makers seemed to think that plus size gals didn't exercise hard.  Every year was a struggle to find a suit that fit, that I looked good in and that would work for lap swimming.  I would be standing in the fitting room flailing my arms around to see if my boobs would stay in the suit.  And I no longer shopped with my sister or mom since I had moved away in order to get work.  I was on my own in plus sized hell.

Slowly I went from colored, patterned suits to plain black.  As I got bigger I was trying to hide my body.  At some point I had become embarrassed by it.    By my size and my tubbiness.  I store my fat around my middle so I look very rotund.  I joined water aerobics and got very good at it.  I added in weight training and land aerobics and lost quite a bit of weight.  For one glorious year I got to wear a blue suit with a pattern on it.

During my pregnancy, I loved being in the pool.  In my last trimester it was a relief to get in the water.  I no longer felt pregnant as the water buoyed my very large tummy up and took the weight of the baby off my spine.  I could stand up straight.  Other people in the aerobics class would tell me that they didn't know I was pregnant until I got out of the water.  I also loved the maternity bathing suits.  I could wear colors and patterns again since I wasn't embarrassed about my chubby tummy anymore.  

After my son was born, I had to take a hiatus from the gym.  I didn't have time to work full time, take care of a newborn and also go to the gym.  I got very fat pretty quickly.  Eventually, several years later I found a gym with a pool and started swimming again but it was back to the plain black plus size swim wear.  I moved a lot back then.  When I had time and money I would join a gym and start either lap swimming or water aerobics or both.  However, it was sporadic.  I had to find a sitter since hubs didn't work regular hours.  My body was huge and my boobs were enormous.  Suit shopping had become almost impossible.  It also wasn't much fun doing it by myself.  I missed my mom and sister.  Then I found H2O Wear.  My water aerobics instructor wore their suits and highly recommended them.  I loved their suits.  Plain, practical and fit pretty well.  Now instead of the spring ritual of raiding the racks of swim suits at the local mall I mail ordered one from H2O.  While this didn't reduce body embarrassment, it greatly reduced suit shopping angst.  A small but appreciated improvement.

I was lucky enough that when I bought my house it happened to have a pool in the backyard.  Hubs didn't want anything to do with it, so all pool maintenance fell to me.  I learned how to take care of the water chemistry, how to vacuum the pool, how to backflush the pump.  I was so  happy we had the pool.  I took very good care of it and swam in it almost daily during the summer months for ten years.  I even did water aerobics in it.  One of the great joys about having a pool in your own backyard is that you can go skinny dipping at night.  I LOVE swimming nude.  I would turn out all the lights in the house so no one could see me in the pool.  Hubs would hold the towel for me when I climbed out so the neighbors couldn't see a thing.  During the day I was in a  plain practical black suit.  Plus sized of course.  No more angst since no one could see me just the little old lady in the upstairs apartment next door.  She used to trot out onto her deck and watch us swim.  Sigh.  I couldn't grow a hedge tall enough to block her view but swimming at night was my absolute favorite.

Then I came down with CFS.  The first summer I managed to take care of the pool chemistry but couldn't always vacuum it.  I would get in and putter around.  I couldn't really swim because I would crash for the next several days.  I remember one day specifically.  I did the stretches I was taught in water physical therapy I had a few years before.  I felt fine so I vacuumed the whole pool afterwards.  The next day I came down with the "flu": shakes, fever, hit by a bus, etc.  I didn't know about PEM yet and didn't realize that I couldn't do a lot of exercise.  I told my doc and he thought I was nuts.  The following year I could no longer control my body temp and if I could manage to get into the pool I would be frozen within minutes and be forced out of the water shivering.  I had gained weight so I was swimming in a very stretchy swim skirt that I had been using for figure skating and an old oversized tshirt.  The following year we didn't even bother opening the pool.  I packed away my bathing suits with the clothes that no longer fit me.  I didn't bother even looking at new ones.

This will be my fourth summer with CFS.  I keep looking at bathing suits in the catalogs that come in the mail.  I want to buy one.  I really REALLY want to buy one.  But what is the use?  We won't be opening the pool.  I can't take care of it and my kid doesn't want to.  I'm a 3x/4x depending upon the brand name.  I'm HUGE.  I'm not sure if I'll be even bigger next year.  Each season I have to buy bigger clothes.  Who knows what size I'll be next year.

My mom came to visit me this past week.  We went clothes shopping as usual.  I bought some nice new tops for summer.  As she wheeled me into the plus size department in Sears, we passed by the bathing suits.  And I had a sad.  I was shopping with my mom and I wanted a bathing suit really badly.  I wanted to pick out a couple of pretty suits and go in the dressing room with her so she could help me decide which one looked best on me.  It would be like old times.  Spring bathing suit shopping like when I was a kid.

But I stopped myself.  When would I use it?  When would I get to the beach?  Would I be able to even walk across a beach to go sit in the water?  If I'm just sitting in the sand why would I need a new bathing suit?  Wouldn't I outgrow it by next year anyway?  So, with my sad, I bypassed the bathing suits.  Mum flew back home the next day and I showed hubs my pretty new shirts.

The following day hubs burst into the house, "do you want to go swim in Rich's pool with me?"  (Rich is our neighbor across the street)  "He has asked me over and you can come too."  All the angst came pouring back through me.  I should have bought a suit when I was out with my mom.  I'm way too fat to be seen in public in a bathing suit.  I only have tee shirts and shorts to swim in.  I probably can't even walk across the street never mind actually swim in the pool.  What if the water is cold?  What if I get stuck in the pool and not be able to climb out (this happened to me a few times the last summer I was in my own pool)?  I would be embarrassed.  I would be mortified.  Fat, huge chick gets stuck in neighbor's pool unable to climb out.  I was embarrassed about my body.  I was embarrassed about my clothes.  I was embarrassed about my lack of athleticism.  I'm a huge, fat, lump.  I decided to stay home and with a simple "no thanks".  I let hubs go by himself.

As soon as he was gone, I broke down in tears.  CFS sucks.  Swimming is yet another thing that I love that has been ripped from me.  I was so happy last year that I got to sit in the sand and get my butt wet by the waves one of the few times I had enough energy to tolerate a ride to the beach.  I haven't done any lap swimming in over six years.  I haven't done water exercise in over three years.  I miss the water.  I miss floating.  I miss the quiet of it.  I miss the gentleness of it.  I miss the freedom of it.  Being able to flip, turn, float, push, kick, roll.  I miss having handstand contests with my kid or diving for quarters tossed on the pool bottom.  I miss suit shopping in the spring with my mom and sister.  I even miss vacuuming the pool.  So I cried and cried.  

I'll get back in the water someday.  Water yoga is going to be my first exercise class followed by water PT or vice versa.  But for now I have a huge sad.  I'm grieving for yet another loss caused by CFS.  This SUCKS!  Maybe I'll buy a new suit just to tell CFS to suck it.  That way I'll look pretty while sitting in the surf the one day I manage to get to the beach.

I Have a Sad

Physically I'm doing pretty good.  I've been doing more cooking and picking up around the house.  I even pulled some weeds yesterday.  That is a first in three years...

However, I've had a big sad all week.  I live near Boston and the bombing at the marathon has affected me greatly.  Every time I hear anything about it I want to cry.  I don't know anyone directly that was injured or killed.  However, last year my son worked at a store that was right next to the bombing site and the windows were blown out of the building.  My son took pictures at the finish line exactly where one of the bombs was placed.  He almost went into the city to take pictures again this year but he decided to stay home this year instead.  Whew!  OMG, I don't know what I would do if he got hurt.  I love him so much.  That was too close.

Two days prior to the race I was in Boston with him.  He pushed me around Harvard Square in my wheelchair.  We had a wonderful afternoon together.  We saw lots of people with marathon jackets on. People that were here for the race on Monday.  I have no idea if they got hurt.  My son has been wearing his marathon jacket since Monday.  He got it when he worked security a few years ago.

Today I'm up watching live coverage of Watertown where they have already killed one of the suspects and are currently searching for the second guy.  I'm not sure if I'm going to be able to sleep at all.  Much much too much violence.  The two guys killed an MIT officer.  I used to work there.  I used to live the next town over from Watertown and I used to shop and get medical services in Watertown.  I know these streets where all the shooting has occurred.  I hate this.  I don't understand why people would do this.

I'm tired.  I'm upset.  I'm scared.  I'm about half an hour away from the action but still much too close for comfort.  This shouldn't be happening here.  Yes, people die from gunshots in Boston but they are in the bad neighborhoods.  It isn't two guys driving around Cambridge and Watertown and who knows where else.

Isolation

I can NOT begin to express in words the isolation that comes with being this sick for this long.  People in the US are encouraged to hang out with others that are healthy, uplifting, upbeat, active, etc.  We are supposed to go out and DO things together.  We aren't supposed to hang out with people that are old and/or sick.  Those people are used up.  They have outlived their usefulness and couldn't possibly have anything to contribute to us as human beings.

I thought I had some to terms with this.  I thought I was okay with staying at home and being on my own.  But, I'm learning slowly, as this drags on, that I'm not.  I'm not okay with spending months in the house only seeing my son, my husband, my son's girlfriend, my doctors and the vendors at the farmer's market.  I'm not okay with my chiropractor knowing me better than my own brother.  I'm not okay with knowing more about the trip the IV nurse just went on than the trip my sister took.  I'm not okay with seeing my doctor more often than my friends.

The last time family was here was three months ago.  The last time a friend was here was last summer.  The last time I watched a movie with a friend in my OWN house was several years ago.  I haven't seen one with a friend outside the house since before being sick.  The only time I saw friends on a regular basis last year was when I commandeered them to drive me to doctor appointments.  This was the only time I had contact with them.  Within three years I have had exactly six visits from friends that were purely for social reasons.  The count might double if you include people stopping by to pick something up and staying for a chat.  Normally I'm okay with it.  Being extremely introverted helps.  Being extremely sick helps.

But today.  Today.  I'm in tears.  I was recently reminded that my skating buddies have moved on without me.  I just read an article about the abandonment of the old in retirement communities.  I just wrote a Facebook post about dealing with the changes in my life since getting sick.  And then I saw this video:

And I'm in tears.  To think that people would do this for us.  To think that people that don't know us, that were never our friends would do this for us.  I am astonished.  And in tears.  It doesn't take much to help those of us that are housebound.  Just call once in a while.  Stop in once in a while.  Bring over a coffee or tea.   Or take us for a virtual walk.  I would LOVE that!  I miss being outside so much.  I miss being active.  I miss being with people.  The internet helps but it isn't the same as real human contact.  As human beings, we need it to thrive.  The biggest loss for me being sick is the loss of human contact.

Holiday Craziness

Since my last post I've been in the ER twice and had a killer migraine headache.  Hence the lack of posts here.

The ER visits were the result of a UTI that took off within six hours of onset to feeling like someone was holding a blow torch to my genitals.  OMFG talk about painful.  Of course one visit wasn't enough and after being in Friday day I had to go back Christmas evening.  A combination of not enough food, not enough water and an infection that was doing its best to take over my body.  Cipro is one nasty ass drug.

A result of being on killer antibiotics for two weeks is that it purged my system of every bacteria known to man and then some.  Once the infection cleared up I felt GREAT!  Better than I have in months.  Since I had a clean gut I decided to repopulate it with good bacteria so I've been eating fermented beets, sauerkraut, sourdough bread, yogurt, fermented cod liver oil, and massive probiotic pills.  I have also kept grains and sugars out of my diet as much as possible so I'm not feeding the bad bugs.  The cool thing about starting with a clean gut is that there was no die off reaction to the large doses of probiotics.  Woohoo!

I have energy.  My head is clear.  I'm reading again.  I want to exercise.  I'm in a great mood. My sleep has reset and I now have no trouble falling asleep in the late evening and getting up in the early morning without having to take melatonin or trazadone!

Of course there are a few other confounding factors to my new found health: I started glutathione shots (long story for another post) instead of my IVs, the shots include a dose of B12 and I started a pediatric dose of prozac.

Whatever is going on I'm happy about it.  I feel like I can take on the world for a change.  Don't get me wrong CFS is still there lurking in the background.  I still have to rest after each exertion.  I still can't walk down my own street but I'm feeling better than I have since last winter.  Whatever it is I'll take it!

The Hormonal Apocalypse

Just to add to the general fun and games of CFS, being female throws an extra curve ball into the works every month or so.  Yup, this was the week of the Hormonal Apocalypse otherwise know as my period.  What makes it worse is that since the CFS started I have no idea when it will show up.  It skipped a month this time so arrived unannounced on Friday evening.  This explains my bizarre meltdown on Wednesday closely followed by the three day physical crash and burn culminating in not being able to get out of bed yesterday.  Ah fun times...

 At least when I was healthy, I knew when it was coming and I understood my bizarre behavior and took some extra B6 to avert the sense of impending doom.  I tend to get very VERY depressed just before my period.  It slowly builds the week before to climax in an epic meltdown.  It was so predictable that when I went crying to hubs that I was a terrible mother/wife/employee/fillintheblank, he would ask me if my period was coming up.  This meltdown phase rapidly ends as soon as my period starts.  It is like a light switch gets flipped and I'm happy again and left wondering what the big deal was a couple of days ago.  Yeah, whack.  I know.

So now I have a problem.  How can I tell if I'm truly depressed or if it is just hormonal?  The randomness of my periods doesn't allow me to use the calendar as a warning system any longer.  I have so many mood swings because of my illness anyway that I am at a loss to figure out whether to take antidepressants or not.  I hate adding more meds to my regimen.  I hate taking antidepressants in general.  But this last meltdown was a doozie, a total sobfest on my shrink's couch on Wednesday.  I had no idea it was hormonal.  I'm probably going to try the antidepressants.  This emotional roller-coaster I'm on sucks.  I hate it just slightly more than I hate taking the meds.

I did feel better when I started my Paleo diet a year ago but I'm no longer sure if it was due to the food or the hope that it would "cure" my CFS.  While the diet has helped with symptoms, I'm obviously not over the CFS.  I've been cheating a lot but I don't know if that is due to my pissy mood of late.  Apparently carb cravings are part and parcel of depression.  After all, wheat acts as an opiate in the brain so it isn't too much of a stretch that it makes you feel better emotionally after you eat it.

BTW, yesterday morning I couldn't get out of bed.  In fact, I could barely move.  You know what I did... I ate sandwiches.  Yup, I had a carbolishous day!  Roast beef sandwich and fries, then a turkey club on sourdough with potato chips and a chocolate shake.  You know what.  I feel GREAT today!  I'm up.  I'm moving about.  I have a little bit of intestinal pain from all the bread but I got to shower and go grocery shopping and go out to eat with hubs.  And I'm happy!  So potatoes or prozac????  Or was it just the end of the Hormonal Apocalypse???

Cutting The Ties That Bind

Prior to my getting sick I figure skated for several years.  I had done it as a kid and passed a couple of tests but gave it up in my teens.  After a being rear ended twice and spending a year on the couch as a result I was pretty out of shape.  I decided that I needed exercise and I wanted to do something fun.  I had already been doing water yoga to help with my recovery and I knew it was time to step it up a notch.  I found a figure skating class for adults and joined up.

Turns out the teacher was a serious figure skater who, back in the day, competed at the national level and had been coached by one of the big guns back in the sixties, i.e. she was an awesome coach.  I got hooked.  I went to Lake Placid to see my Mum compete in Adult Nationals and while there saw the other women competing at bronze level and walked away with a new goal; I wanted to compete.  I knew I could do it.  I knew I could skate that well.  I went back to my coach and started training.  I needed to pass four tests before I could compete at nationals and also get some experience in the local competitions.

I skated at four different ice rinks but mostly with two clubs, one of which was small enough to get to know me.  Since that was the club with the adult class, I made friends there.  Four of us formed a small group.  We were the adults that kept coming back.  The ones that wouldn't quit even though it was hard.  We became friends.  We were a disparate group; I was the oldest, then a man that used to work at the same lab as me, and two younger professional women in their late twenties.  We went to local ice shows together.  We went to competitions together to support each other.  We were eventually asked to perform in the ice club show.  I came up with the idea of doing Bali Hai to the old Frank Sinatra number.  I made the costumes and recorded the music.  We had great fun.

After I got sick, I stayed in occasional touch with each of them.  I went to the Christmas shows and the club's end of year exhibition to watch them skate and visit with them and my coach.  It has been two and half years since I skated with them.  It has been two and a half years since getting sick.  The emails have tapered off.  I haven't heard from one of the girls for almost a year even though she now lives in the same town as me and is friends with me on Facebook.  The other girl had two children so she is busy with her family.  I still hear from her once in a while but she isn't skating right now.  The guy sends me email a couple of times a year to check up on me.

Well today I found out that the club's holiday show was this evening.  No one told me about it.  No one asked if I was coming to watch it. Not one single email letting me know it was happening.  I have been forgotten.  They have moved on.  Since I no longer skate with them, they are gone.  I am so very sad.  I keep crying.  Not that they were close friends, we only had skating in common.  But we had gone places together, gone out to eat together, gone to shows together and supported each other in competitions.  I thought the ties would last longer.  I didn't think they were that fragile.  But they are almost completely gone.  I can't quite let go completely.  I still hold out hope that I'll return to the ice in a couple of years.  I'm crossing my fingers that my coach will still be teaching.  How will I treat them when I see them again?  How will they treat me?  I think I'm going to be really angry when I get back out in the real world.  Really pissed off at the people that abandoned me when I was sick.  What kind of friends do that?  How had this become acceptable in this society?  I'm hurting.  The emotional hurts cut far deeper than the physical illness ever could.

Cooke's Skate Shop

Most days I'm okay and even happy even though I have this unrelenting illness.  I get up, do what I can to help out, rest a lot, cook a simple meal, visit doctors and sleep.  I kiss my husband and listen to his stories.  I sit in the yard and watch the clouds and the bugs.  That is about the extent of my days.

Every once in a while something sneaks up on me and upsets my domestic bliss.  This time it was a receipt.  In preparation for my upcoming disability claim review I'm already sorting papers.  I'm giving myself several months because I can only work on it sporadically and only for short bursts of time.  Two days ago I was sorting through old receipts looking for slips from the pharmacy for all the meds I take.  Since I haven't sorted receipts since before I got sick there were several years worth to go through.  Most of them were from the supermarket (I save and then destroy them since I use a credit card to pay: call me paranoid but both hubs and I have had our cards cloned).  I was almost done.  I was nearing the bottom of the shoe box when I found it.  A receipt from Cooke's Skate Shop for some minor work I had done to repair my figure skates a couple of months before I got sick.  Then it hit me.  That overwhelming grief.  The deluge of tears.  That yearning to be normal again   The desire for my old life.  The hatred of my illness and all the things it has robbed me of.  I cried.  I wept.  I wailed.  My cat looked at me funny.  As fast as it had snuck up on me, it was gone.  My tears dried up and I went back to sorting receipts.  Within the hour and one last wistful glance I ran the receipt through the shredder.

For some reason figure skating does that to me like nothing else can.  The last major moment of grief and tears occurred when I found out that the 2014 Adult National Figure Skating Competition is going to be held in my home state.  The big goal I had when I started figure skating again was competing at adult nationals and here it was coming to my backyard and I am stuck in the house with CFS.  Even if by some miracle of God I was instantly cured I probably wouldn't be able to compete since it had taken me two years to even get close to qualifying and now I have the muscle tone of a limp noodle and would have to start from scratch.  Again, I cried.  I wailed.  I soaked hubs' shirt with tears.  Then I got over it and carried on.

It has taken two years but I can finally watch figure skating on television again, well actually the internet since they have crappy TV coverage.  For the first year I couldn't watch it at all.  Then, last year, only if I was in the right mood.  Now I can finally enjoy watching it.  I miss it terribly.  I've had dreams/nightmares about being on the ice.  Most of them had me trying to skate in tiny spaces or jumping over obstacles   There were always barriers in my way of skating freely and fast.  I miss it.  I miss it terribly.  And if I let myself, I would pine for it.  It is something I have to ignore for now.  Stuff it down and hope that someday I'll be able to skate again.  Even if it is just figures.  Just to be able to walk into the rink to visit my coach and friends would make me happy.

Grief is part of this illness.  We never know if we will be among the chosen few who will recover.  I hope I am.  But in the meantime I'll have a few crying jags when skating sneaks back into my life and blindsides me.

The Egg or The Chicken

Had a long talk with my shrink today.  At our last meeting he suggested that I go on meds to "even out your mood swings."

I told him about my abysmal record with anti-depressants.  The only one I've done well on is Prozac and that was over 20 years ago.  I've tried many of the new ones.  I had side effects to most other SSRI class drugs and that was BEFORE CFS.  I had a severe reaction to SNRI class drugs that were proscribed in low dose for pain use after I contracted CFS so those are totally out of the question.

Of course I was told by Dr. Komaroff that anything that acts on the central nervous system wreaks havoc with CFS patients so I'm loath to even try the Prozac.  I would have to start out on the lowest dose they make and maybe even mix it into juice and only drink half.  I would also have to be monitored closely for side effects of any sort.

Aside from the drugs themselves, we also talked about why I would be taking them.  I told him that it made me feel like my sadness, my grief wasn't legitimate.  That it wasn't right to feel this way.  That it needed to be wiped out by the drugs.  He gave me an excellent list of things to consider:

Is the sadness overwhelming?
Does it interfere with everyday life?
Is it persistent?
Can I tolerate the sadness?

My sadness comes and goes.  It isn't persistent.  I cry more often in his office than outside so his perception is a bit skewed.  I generally have triggers for the sadness such as watching the Olympics (people doing things I used to do such as swimming or running)  or digging my ice skates out of the closet.  I cry.  I get most of it out of my system.  I go on with life.  I get annoyed that I'm still sick.  I get angry at not being able to do stuff.  I grieve for the life I've lost.  But most of my days I'm okay.  Most days I can function within the boundaries of CFS.

I also realized that I can't really untangle the CFS from the sadness. I don't know if I wake up feeling crappy because of the CFS or because I'm sad at being sick.  The proverbial chicken and egg problem.

I know what would absolutely improve my mood: BEING ABLE TO DO STUFF!!  If i could get a drug that cured CFS I wouldn't have to take any prozac!

Rubbing Salt in the Wound

Well on top of my horrible week I just got some more crappy news: in 2014 the Adult National Skating competition is being held on Cape Cod which is roughly two hours away from me.  Why is this crappy news?  The whole reason I got into testing and competing in the adult track of USFS (United States Figure Skating) was that I wanted to compete at Nationals.  I was in the middle of my first competitive season when I came down with CFS.  I had one more test to take to qualify for Nationals.  I had already passed three tests and received two medals in competition.  Since the competition is so close several of my old skating buddies will probably go to compete.  If I am lucky, very lucky, I will get to go and watch.  I've been crying for days over this.  It is just one more thing to grieve for.  I HATE YOU CFS!!!!!

To Drug or Not To Drug. That is the Question.

Sorry Shakespeare.  I just couldn't resist.

Bad week here in this chronic chick's house.  The tumble I took the other week has reactivated the fibro pain in my back.  I've had a tough two weeks moving around and sleeping due to pain in my spine and the surrounding tissues.  I always get cranky and out of sorts when I can't sleep enough.

To add to the not enough sleep problem the neighbor has been tying their dog up to the tree outside my bedroom window and letting it bark.  This happens at all times of the day and night, 8am, noon, 1:30am.  Doesn't matter.  They are too lazy to walk it so they just put it outside where it barks the entire time.  I got woken up twice this morning.  I want to shoot it and I like animals.

I also sat on my damaged ankle wrong the other night and crunched several bones.  Since then it has swollen up again and just aches all the time.  It often hurts to put weight on it but not constantly. I can hardly wait for my chiropractor to readjust it and get it working right again.  That is tomorrow.

I also got a call from the CDC to do a telephone survey.  Cool, I thought.  I can tell them all about CFS etc.  But no!  It was a survey on sexual harassment, sexual abuse and domestic violence over the entire course of my 50 year life.  Man did that dredge up some unpleasant memories.  I swear as a woman in the US you can't live out your entire life without getting at least harassed if not actually felt up or raped at some point in your life.  It sucks but there it is.  Yes, I have been felt up on more than one occasion, the first time when I was just 7.  When I was older, I was pawed at by high school boys and coerced by boyfriends that had only their penis on the agenda.  My sister and I chased off a peeping tom when I was in my 20s and we think it was probably my own dad.  I've had coworkers both feel me up and threaten me in a sexual way when I worked as an automechanic.  I even had a customer wave money in my face and proposition me for sex.  The manager threw him out.  And even in a research setting I was told that I had no right to free thinking since I was a female.  I was told that my husband should think for me and had "Why a Woman Can't be More Like a Man" played over and over again in the lab.  "Just for fun" of course.  And, even now, I've been in a few uncomfortable situations with hubs since getting ill and this is from someone that has been an awesome spouse for 20 years and a great boyfriend 4 years prior to that.  Not the most pleasant of phone conversations.

Also, my Mum has been quite sick.  This on the eve of her 80th birthday.  She never gets sick so we were quite worried about her since she had a odd set of symptoms.  It took the doc a couple of tries to figure this one out since it is a fairly rare disorder.  She is on the mend though.  Once the doc figured it out they got her on the right meds and she is much improved.

Well her treatment actually triggered some anger in myself over my own CFS treatment.  You see the illness she has requires low dose prednisone to tamp down the inflammation in her blood vessels.  Last year, I had a cortisone shot in my shoulder for an unrelated condition.  The cortisone stays in my system for about 30 days.  It is supposed to last longer but in me it doesn't.  Anyway, while the stuff was hanging out in my body making my shoulder work properly, all and I mean ALL of my CFS symptoms calmed down.  I was driving, reading, cooking, walking, shopping, etc.  When the month was up I returned to my bedridden self.  When I told my ortho guy about the reaction he told me that my doc could prescribe low dose prednisone for the CFS.  Of course, when I talked to my doc he said no.  It was too dangerous.  I've been on prednisone before and had no adverse reactions to it but of course that was short term.  So on the way home yesterday from my ortho followup for my knee I broke down and had my first cry.  Why can't I get prednisone?  Why does my illness have no treatment?  My life sucks!!  I want a drug that will help with my symptoms and at this point I'm not too fussy about danger.  I'm just supposed to hang around the house hoping this will resolve when I know a drug is out there and available but my doc is too chicken to give it a go??  WTF!?!

To give my doc some credit it is probably a liability thing.  It would be an off label use of the drug.  He could potentially get his license yanked for turning me into a guinea pig but at this point I DO NOT CARE!  I WANT TO TRY THIS!  I AM SICK TO THE TEETH OF SITTING AROUND THE HOUSE!  I am SO frustrated with him.  My last visit I went in with a list of odd treatments that other CFS patients have tried with some success.  They are low risk so I figured he might go for them.  Not a chance.  He said no to all of them.  I'm to messed up in the head when I'm in the actual office I can't argue my case at all never mind well.  And of course I had forgotten to print out papers regarding the treatments to help bolster my case.

Which brings me back to spouse...   Yes, he loves me.  Yes, we are getting along way better.  Yes, our marriage is recovering.  However, I can NOT talk about my illness in any way or he gets wonky. Sometimes it is a little wonky but often he gets angry.  So much so, that reasonable conversation is no longer possible.  So the idea of me explaining things to him so that he can go to the appointment and actually advocate for me is beyond the realm of possibility at this point in time.

Which brings me to my final rant of the evening, my new waterbed.  We got it three weeks ago.  While I sleep really well on it and it is great for my sore joints, it smells.  It is like going to sleep wrapped up in a brand new vinyl shower curtain every night.  The smell has abated somewhat.  The room no longer stinks.  However, I'm a stomach sleeper so my face is inches away from the mattress every night.  When we first got it the smell made me nauseous.  It isn't that bad anymore but I have to wonder what horrible chemicals I'm inhaling every night.  I really don't know if we are going to keep it.  We haven't had that discussion yet.

Okay, so on to the drugs.  I saw my shrink today and unloaded most of the above on him.  I left out the CDC phone call since that is another can of worms for another day.  Of course I was crying the whole time.  It has been that kind of "me against the world" week.  Also I just cry at the drop of a hat these days.  Must be a hormonal thing from the illness.  I used to be so stoic.

Anyway, after he explained that he in no way considers me clinically depressed, he suggested maybe I take something to even out my moods.  So I'm thinking drugs or no drugs?   Prosac is the only antidepressant I've had any luck with in the past (I've gone through three major bouts of depression over the last 50 years) but that was before CFS.   Dr. Komaroff told me that anything that affects the central nervous system is highly reactive with CFS.  I've already had severe reactions to Gabapentin and Effexor so that whole class of drugs is off limits.  I took Prosac over 20 years ago so I have no idea how I will react to it now.  Also I don't feel depressed.  I have bad days and occasional bad weeks but I'm not classically depressed just really tired of being sick.  So here is comparison of my symptoms:

Depressed me:
"I'm worthless"
"I'm shit."
"Why would anyone like me/want to be friends with me/etc?"
"I'm a terrible parent."
"I'm a terrible employee."
I mope around.  I don't want to do anything.  I'm not interested in doing anything.  All I want to do is sleep and hide.  I'm not happy.  I'm not angry.  I'm emotionally flat.

CFS me:
"I'm angry at my primary doc."
"I'm angry at the CDC/NIH/CFS research funding/etc."
"I'm angry at my CFS doc."
"I'm angry at hubs."
"I'm angry at my illness."
"I'm angry at my broken body."
I cry at the drop of a hat.  I'm so angry I want to punch walls.  I want to yell at people.  I feel like everything is a fight.  I feel like I am on my own fighting with no help.  But on good days I do stuff.  I cook.  I enjoy the outside and the sunshine.  I enjoy the flowers in my backyard.  I like going out for rides with my son. I love going to farmers markets.  I'm often happy.  I love it when my son and his girlfriend come over.  I love it when my friends come over to visit.  I love it when my Mum comes to visit.  I love spending the quiet hours of the morning curled up with my cat on the couch watching Hulu or Netflix.

So, do I want to be drugged so that I'm not as angry?  So that I don't cry as often?  So that I'm not suffering?  So that I'm not in emotional pain?  So that I "level out" my emotions?  Is going through the darkness of this illness something to be fixed with meds?

There is this idea that we need to walk through the darkness and not turn away from it.  That the darkness will make us stronger.  I've been through lots of darkness in my life and I know I'm very  very strong.  I'm a fighter.  I don't give up even when I'm crying.

There is also the Buddhist idea that this is all illusion and impermanent and will change soon anyway so why get attached to it in the first place.  Maybe that is what I need to remember.  I get angry because I am wishing for things that I can not have at this point in my life.  I am wanting.  In Buddhism, it is wanting that is the root cause of suffering.

I need to figure out how to let go of the wanting.  Then I won't need the pills.  And, I'll be stronger for it.

A Little Tumble

CFS bit me in the ass yesterday but not in the way you would expect.

I was out on the deck grabbing a pillow to do a little sunbathing.  I was close to the deck edge and turned suddenly.  I don't know if I got dizzy or over confident but I stepped down suddenly and without looking.  I missed the step and ended up on my back in the grass staring at the sky wondering what the heck just happened.

Somehow I managed to twist my right ankle, scrape my right knee, scrape the top of my left foot and wedge the corner of the bottom step under my left knee cap.  I had a great case of road rash and had to pick rocks out of the bloody gashes.  And I was in a HUGE amount of pain.

I managed to get up.  For some reason I managed to not curse my head off.  I hobbled over to the garden hose and did a preliminary wash off.  I hobbled into the house and had kids' girlfriend run and get the Bactine out of the bathroom.  I liberally washed both wounds with it.  Dabbing blood and the cut.  I tried the knee out to make sure I could flex it because I knew it would stiffen up very quickly.

Of course hubs was in another state doing autocross racing at the time.  I knew if I called him he would freak out so I waited.  I wasn't dying.  The walk in clinic was open until 8pm.  I could just patch it up and wait until later in the day to let him know that I would not be making dinner after all.

Thank goodness the kid's gf was around.  She was really helpful.  She fetched things for me and offered to help in anyway she could.  Unfortunately she can't drive so a quick trip to the clinic was out of the question.

I finally got the nerve to call hubs and told him what had happened.  He said he would be home in about two hours and would figure out what to do then.  When he arrived he told me that the clinic would probably blow me off since it was late on a Sunday night.  I would prefer to see my ortho guy anyway.  He has been great with my joint problems in the past.  I also wanted to see how I felt in the morning.

When I got up this morning, I had deep jarring pain when I put weight on my leg.  Not the surface pain of the cut but deeper joint pain.  Not good.  I peeled the bandages off and my entire knee was swollen and pink with road rash.  At least it wasn't infected yet.  I put ice packs on it when I could tolerate them and called my primary care doctor.  He was on vacation.  I asked the secretary if I could see my ortho doc and she arranged it for me.  Yay!!

My kid miraculously had the day off work so he was available to drive me.  The doc was worried about my knee as well.  She said it didn't look good and the fact I hooked the knee cap with the step corner didn't bode well.  I had a series of x-rays done by the ortho specialist consisting of a bunch of odd angles so they can see all sides of the joint and even underneath the knee cap itself.  No fractures!!  Yay!!  So I have a nice bone bruise on the left knee and a slight sprain on the right ankle.   They gave me a really cool ice pack to wear and I have to go back in two weeks so they can check on me.

I'm not normally a klutz but this illness has turned me into one.  I am constantly dropping things, knocking things over and now apparently falling.  This is bad.  It makes me worried.  Can I no longer be left alone?  Is my decision making, balance, and vertigo bad enough that I can't be trusted to be by myself anymore?   This seriously worries me.  Probably more so since a good friend just lost his mother to a nasty fall.  She couldn't catch herself and got a nasty concussion that finally took her life.  Falling is serious.  If I hadn't rolled over and landed in the grass I would have faceplanted on the stone patio.  It could have been way worse than it was.  I came one foot away from having a nasty concussion.  As it is my rib cage is really sore.  I can hardly wait until my chiropractor comes back from vacation and puts everything back where it belongs.

But falling.  Now what do I do?  I'm usually pretty good about going slowly, looking where I'm going, looking at the steps before I go up or down them.  But there was that little lapse of judgement.  In typical ADD CFS fashion I got distracted by a spider hanging off the edge of the cushion I had picked up.  Instead of looking where I was going, I span around too fast and  literally stepped into oblivion.

So I'm paying for that now with pain and swelling and bleeding.  Thank goodness it wasn't worse.  But now what do I do?  Do I have to have someone come and stay with me every time hubs goes out of town?  How embarrassing.  I'm only 50.  Gads!  Until this point I never felt like a burden to my family.  Even at my sickest.  I don't want people worrying about me.  For some reason that bothers me.  I don't want to burden family with unnecessary worry.  I always thought of myself as independent, even with hubs having to take over the bills and the driving and the housecleaning.  I always knew I could manage on my own if he wasn't around.  It was nice that he was doing it but I would figure out how to get along if he buggered off.  But now.   Now.  With the falling incident I can't possibly be on my own.  Someone has to be around.  Someone HAD to check up on me.  If I had knocked myself unconscious yesterday how long would I have laid on the ground until someone found me?  An hour?  Two?  Three?  Kid's gf was inside the house when I fell.  She had no idea that I fell.  I had told her I was going to lie down for a while.  She wouldn't have come looking for me for a long time.

This makes me feel so old and dependent and needy.  Ugh.  Now I'm worried.

Food Grief

I just read this great post on the Five Stages of (Food) Grief.  Yes, that is right.  Mourning our old food lifestyle.

Just the other day, after my food meltdown (briefly alluded to in this post), I was whining to my shrink about how I LIKE Boston Cream Donuts and chocolate cupcakes and HATE liver and dislike sauerkraut.  Given my druthers I would eat lots of the former and few of the later.  However, if I want to heal my guts.  If I want to go Paleo/Primal.  If I want to start Crossfit when I get better.  The donuts and cupcakes have to go.  At least for a few months until my guts heal up and I'm starting to feel better.   However, they can NEVER be a regular part of my diet ever again.

Reading The Five Stages post made me realize that my food meltdown the other week was really step two of the food grieving cycle.  I was angry and I was going to eat "normal" food.  Dam it!!  Even if it made me feel really really sick.

The cool thing is that I seem to have passed through this stage.  I am no longer eating all the junk food in the house.  I have managed to remind myself, in the usual manner, that yes these foods really really do make me feel like crap.  And hence, remind myself why I'm doing this in the first place.  I want to get better.  I want my body to heal so why the hell am I damaging it further by throwing what amounts to a food temper tantrum?  I guess when it comes to food I'm more like a two year old than a grownup.  I hate it when people tell me what I can and can't eat.  This is probably why I won't commit to either a strictly WAP or Paleo diet.  I'm marrying the two together into a Primal diet hybrid: mostly vegetables, some fruit, nuts, dairy, meats and a few properly prepared grains and ferments.

Now before you start to tell me that this is only stage three bargaining kicking in I've already done that route with GF and I'm so over it.  I've tried the crappy pizza and the even crappier bread.  I've cooked with weird flours that taste fine when they come out the oven but mysteriously transform into sandstone bricks overnight.  I've wasted so much time and money on food substitutes.  I'm done.  I'm not going there.  I'm too sick and don't have the money to do that again.

Anyway, I don't need the substitutes this time.  To me this food seems more like going back to my English roots.  Eating steak and eggs and drinking unhomogenized milk.  What I remember of meals in England is roast dinners.  It wasn't until we came over here that I remember eating donuts and Wonder bread and Twinkies.  Not that I totally behaved in England.  I did acquire a lifelong chocolate addiction from there.  But I seriously only remember baked goods from the US.  So going Paleo or even WAP is closer to the food that I was raised on than the "healthy" low fat, whole grain diet I've been eating for decades.  So I'm not sure I will do the crying stage either.  I'm certainly going to mourn the loss of cupcakes and the loss of American "normal" diet but in a sense I'm going home to English cooking which makes me happy.  I'm looking forward to making a pot roast the next time my sister comes to visit.  She misses my pot roast.  I used to make a kick ass one.  She got really mad at me when I turned vegetarian and stopped making them.  Luckily I still have the recipe and I'm a way better cook now than back then.  I'm betting it is going to be spectacular.  So screw the cupcakes; bring on the roast beef!