Thursday, December 29, 2011

Rage Against the Dying of the Light

-Do not go gentle into that good night
Dylan Thomas

In the past 4 months, there have been 3 deaths.  First my zaidy, then my father-in-law, and now a young man I used to know has passed away of a brain tumour.  I hadn't seen T in ten years, but I remember him well.  A good friend of mine was one of T's best friends right up until the end of T's life, and they worked together every day for the past many years, at least when T's health permitted him to work. 

T was a quiet, brilliant, creative fellow; a real still-waters-run-deep type.  Before he got sick, one year he travelled around the world and kept an online journal.  I remember crying with laughter as I read the perfectly-worded stories of his misadventures. 

T was a few years younger than me, in his mid-30's.  He was married.  I never met his wife, but she's out there somewhere, now a grieving widow.  It's beyond imagining.  And, of course, my good friend is bereft.

When my zaidy died, I was sad.  When I lost my father-in-law, I felt frightened, as if he had been a protective layer between Ken and Ken's mortality, and his death had made Ken less safe.  When I heard of T's death, I got mad.  I yelled and shook my fist at God.  Told Him I know I'm supposed accept His better judgement and all, but I've had enough.  This is not OK.  I am not feeling all zen and surrendered to this schedule of people I care about dying every few weeks.

I'm alright.  I'm at work this week, which is a good thing.  The routine is soothing and my mind is occupied with day-to-day distractions.  But when I find myself alone I feel the fury bubbling up.  Good thing God can take me being angry with Him.  There's nothing I can throw at Him that can hurt His feelings.  Even the closest relationships have conflict sometimes.  We'll kiss and make up - when I'm ready.

Sunday, December 25, 2011


My late father-in-law transformed the way I see leafless trees.  Before I met him, trees in wintertime seemed stark, depressing, cold, close to death.

My father-in-law loved to draw bare trees.  In careful, intricate detail, he traced them, from the massive trunk to the graceful, delicate shapes of every branch and twig.  Now when I go for a winter walk, as I did this morning, I am surrounded by beautiful, surprising sculptures, no two alike.  It's like wandering through an open-air art gallery, populated by squirrels.

"You don't run down the present, pursue it with baited hooks and nets.  You wait for it, empty-handed, and you are filled."

Annie Dillard
Pilgrim At Tinker Creek

Tuesday, December 20, 2011

Happy Mallidays

On Saturday the 17th, I took my aunt shopping for clothes. My mother and her youngest sister are both, tragically, clothes-shopping-impaired.  They require a skilled facilitator in order to maintain their wardrobes.  I am happy to oblige. 

You may be asking yourself: "Is Sparkling Red insane? Why on earth would she schedule a clothes-shopping trip right at the peak of the Christmas rush?"  The answers are: 1) Yes, but you already knew that; and 2) because my aunt has been wearing the same two sweaters and three pairs of identical black pants to work every day for the past Lord-knows-how-many months. It was a fashion crisis!

How did we survive, and even enjoy our day?  I am about to share with you, the privileged few, my shopping secrets. I trust you to be discrete.

1) Use a granny buggy.
Worried about looking uncool? Forget about it. There will be plenty of time for posing later, when you're wearing your new outfits. Bring along a wheeled shopping buggy to carry your purse (that sucker sure gets heavy once you've been hauling it around for a couple of hours), your coat (no need to sweat while you shop), and your purchases.

2) Locate a source of water.
The price for a bottle of water varies widely among various retailers in the same mall.  The movie theatre will charge you $3.50, the upscale sandwich place in the food court asks for $2.25, but I've found two places in my local mall that only charge $1. Bingo!

3) Be willing to go out of your way for a clean washroom.
Mall washrooms by the food court or the main entrance are filthy, stinky, and distasteful.  However, if you do your research you can often find cleaner bathrooms hidden away in quiet corners.  The best bet in a multi-storey department store is to go up to the top floor, where they sell corduroy-covered recliners and washing machines.  The secret washrooms in my local mall are inside a sit-down restaurant, but accessible to the public via a pass-through next to their take-out counter.  Because there's no signage pointing out these facilities to passers-by, I often have the ladies room all to myself.  Luxury!

4) Shop for clothes on the Saturday before Christmas.
This only works if you're at a pokey little local mall, like we were.  If you try it at the big ones, like Yorkdale or the Eaton Centre, you deserve all the suffering in store for you. 
The key to this point is: on December 17th, almost no one is shopping for themselves.  Everyone is buying gifts.  Therefore: no lineups for the change-rooms!  It's grand!

My shopping strategies proved themselves.  My aunt found 5 items of clothing and a sassy piece of costume jewellery to complete her outfits.  Another satisfied customer.

Wednesday, December 14, 2011

Life Goes On

I'm pleased to report that I am pretty much back to "normal" as of the last couple of weeks.  I am certainly experiencing life from a new perspective, post-nervous-breakdown, and still making internal adjustments to the epiphanies that assaulted me violently from all sides during the past few months, but to the casual observer I would appear to be going about my business successfully. 

Physically, I feel good.  I'm sleeping well, eating well, and my energy levels are grand.  I am still trying to gain back the weight that I lost - all my pants are at least one size too big for me around the waist now, except the really stretchy ones - but hopefully it will come back given enough time and snacks.  I'm not skeletal, but I would say that I'm down to my modeling weight, meaning the lower end of the acceptable range.  There's a fine line between being slim and looking like you just finished a brutal course of chemotherapy, and I am trying hard to avoid crossing that line.

I'm still dealing with some fears around food, some of which are well-founded and some of which are silly and irrational.  Anytime I have to eat something that I have not prepared myself, I feel worried.  I watch the clock for two hours from the time the last bite goes into my mouth, and only feel safe once that time has elapsed.  (It was two hours after my last wheat-poisoned meal that the Total Gastric Devastation kicked in.)  I'm probably being more careful than I need to be, considering that I'm not nearly as sensitive to traces of wheat as, say, someone with celiac disease, but I'm eating as though I am.  Better safe than sorry, especially when it comes to restaurants.  My worst nightmare would be for TGD to catch up with me when I'm halfway home on the subway. :-p

My new policy is that I will no longer eat any food that I have not prepared myself if I cannot easily see exactly what all the ingredients are.  Steamed veggies are fine, as are salads with no dressing.  I will consume baked or boiled potatoes.  Hunks of grilled meat without sauce are acceptable.  That just about sums it up.  I am no longer willing to risk soups (often thickened with wheat), sauces (ditto), casseroles, stews, and especially not any "gluten-free" substitute for regular bread or baked goods.  My step-mom told about one time she went to a restaurant with gluten-free options on the menu.  She ordered gluten-free pasta and what did they serve her?  Of course, regular wheat pasta.  She didn't notice until she was a few bites in.  Fortunately I don't think she gets super-sick from wheat, but still.  It's just too easy for a mistake to be made in a busy kitchen.

(Another case in point: at our office Christmas party just last week, an employee who has celiac disease was served a dessert which looked like a chocolate-and-vanilla double-layered mousse, but the bottom layer was, in fact, cake.  He realized after he had swallowed the first bite.  The consequences for him of eating gluten are so dire that he had to go straight to the men's room and stick his finger down his throat to make himself throw up.  That was preferable to a week of severe abdominal pain.  Fun times at the Christmas party!  When the manager of the banquet hall was informed, he was more interested in defending his staff than apologizing for the mistake.  I'm just lucky I'm dairy-free as well as wheat-free or I would have ended up eating the dessert too.  Yikes.)

Anyway, aside from obsessing about food, life is going well.  I have been seeing a lot of friends and family, and feeling more connected to people in general.   I wasn't sure that I was going to make it through to the end of this year, but I'm almost there!  I hope 2012 is somewhat less eventful.

Thursday, December 8, 2011


My mother prefers "mum" to "mom", because it's more British.  I call her mom, but when I'm writing a note or a card to her, I always address it "Dear Mum".  It makes her happy.

My mom has stricter dietary restrictions than I do, but it doesn't seem to bother her much.  She was diagnosed with celiac disease when she was very young, back before anyone had an understanding of what caused the disease.  For a long time her diet was restricted to plain white rice, skim milk, boiled beef, and mashed bananas.  She used to steal coins from her grandmother's changepurse and sneak off to the candy store after school to buy treats.  She would get so sick that sometimes she ended up in the hospital, but she still says that it was worth it.  Compared to that diet, the choices that she has now seem abundant.

My mom likes her tea STRONG.  There's so much tannic acid in the tea she brews that it'll make your tongue curl.  She also prefers it very hot, almost straight from the kettle.  She's hardcore like that.

Recently my mom and I went shopping at a housewares store that was having a clearance sale.  There was a table spread with discounted rubber mats for outside your front door.  She spotted one that she thought was cute.  It had the word "Hello" in various fonts and languages all over it in raised lettering.  She started regretting the fact that she had already bought a new rubber mat for her new house.  "Oh, this one is so much nicer!  I should have waited!  I wish I had this one instead!"  "Mom," I said, "check the price."  The mat was $13.  In my mother's budget $ 13 is not a big deal.  "Mom," I said, "just buy it.  Donate the other one to charity or just throw it in the garage."  She looked at me as though I had just revealed a brand new, shining truth to her.  "You know," she said, "if you hadn't said that I never would have thought to buy it.  I would have just assumed I had to live with the other mat forever."  She bought the mat and is happy with it now. 

My mom subscribes to two newspapers and can't stand to recycle them until she's at least flipped through every page of her favourite sections.  If she's been busy the newspapers stack up on the counter until the piles are intimidating.  She listens to CBC radio all day long, which has constant news updates and talk shows about current events and culture, which are the subjects she's interested in.  I have tried to convince her that she doesn't need to read every newspaper in order to keep adequately up to date, but to no avail.

My mom loves her cats so much that she heats up their soft cat food on the stove in the morning.  It smells terrible.  If I complain she asks me "Would you like to eat an ice cold breakfast on a cold winter morning?" 

I was over at my mom's house on Tuesday night.  She pulled out a giftwrapped box and said "I found this.  I think it's for you."  I thought she meant it was a gift from someone for my most recent birthday.  It took me a few questions to realize that she found it at the back of a closet when she was packing for her move.  She thinks that it's a baby gift for me, from when I was born in 1972.  I tear it open and sure enough, she's right.  It's a brand-new, never worn onesie, meant for me 39 years ago.  As you can see, everyone expected me to be a boy:

Friday, December 2, 2011

Food or Poison?

This afternoon I watched a colleague of mine assemble a cheese sandwich.  In my world, a cheese sandwich is the gastronomic equivalent of a slice of solidified road tar in between two stinky old insoles.  It's not in the category of "food".

It's a surprise to me how many people have little to no allergy awareness.  In fact, I was pretty ignorant myself at this time last year.  I fancied that I knew a fair bit about allergies, having had a good friend who would go into anaphylaxis when exposed to any type of nut or seafood, even trace amounts.  To this day I never use the same knife in the jam jar and the nut butter jar, just in case a nut-allergic person should happen to show up at my house demanding jam.

Still, I didn't realize how toxic peanut butter is to some people.  I didn't know if I ate a peanut butter sandwich on the subway I could transfer peanut oil to one of those poles standing passengers hang onto, and that tiny amount of peanut oil could potentially kill someone.  For example, my friend's seven-year-old son.  I no longer eat peanut products in public.

I also didn't realize how sensitive people with celiac disease are to gluten.  Over a year ago I organized a lunch meeting for work.  I knew one of the attendees couldn't have gluten, so I simply avoided ordering sandwiches, wraps and pasta.  I didn't realize that the BBQ chicken sauce might have gluten in it, or if there was preservative spray on the tossed salad it might have gluten in it.  This fellow came to me to double-check that I had been diligent, and only then did I find out that it wasn't enough not to have wheat as an obvious ingredient.  He told me, pardon my French here, that if he ate even a trace of gluten he would "shit blood for a week". 

This is one area in which ignorance is very dangerous.  For example, a friend of a friend is extremely allergic to all forms of onions and garlic.  If there is so much as a trace of these in anything he eats his tongue swells up and he will have acute stomach pains that keep him bedridden for days.  My friend was out at a restaurant with this unfortunate guy, and they checked very carefully with the server about the dish he was going to order.  He was assured that it was all clear.  When the food came, it was liberally sprinkled with green onion.  Green ONION. 

It doesn't matter how clearly you communicate.  In the end you have to trust other people - the server, the manager, the kitchen staff...  And who are they anyway?  A bunch of strangers.

The Total Gastric Devastation I experienced a few weeks ago has now been conclusively blamed on wheat.  Ken didn't realize that gnocchi contains wheat flour as well as potato flour.  My symptoms were wheat poisoning.  My body completely rejected it. 

I now feel very nervous eating out, especially in places where there are gluten-free options that look just like the regular food.  How do you know that the server didn't accidentally swap your plate with someone else's?  How do I know that this is a gluten-free waffle if I didn't open the package myself?  Am I willing to risk being extremely ill on the say-so of a stranger who has six other tables to wait on, might be a little high or hung over, and just doesn't care all that much? 

I have eaten out in a few restaurants where I felt comfortable, for example one place where  my mom goes regularly (she's a gluten-free gal), and another (a Montana's) where the manager has celiac disease.  Still, right now I feel infinitely more comfortable eating my own food at or from home.  At least I'll be saving lots of money.

Friday, November 25, 2011

Sturm und Drang vs. Faith and Love

My girlfriend from the west coast was in town, so we met for dinner.  I gave her a pad of poopoo paper I'd been saving for her.  Nothing says "I've been thinking of you" like a gift made from real poo.  She was pleased.  I bet her three kids are going to get a kick out of it.

Our conversation centred on health-related topics.  She has just done a 3-week cleanse.  How her parents are doing.  What it was like saying goodbye to her aunt who just died of cancer.  Of course I told her about the goings on and passings on in my life.  We talked about our parents' health, our husbands' health, special diets, who is allergic to what...

It seems to me that sometime during this year I crossed the border into another country without realizing it.  There was no welcome sign, no customs official demanding documentation or a pat-down, no duty-free gift shop.  But I looked up one day and found myself in the Land of Middle Age.  It seems like everyone who wandered in this realm unawares is dealing with health problems, and/or aging parents, and/or they are an aging parent.  I hear myself saying the phrase "my husband's cardiologist" and think that it's too soon for this.  I expected to make it to at least 40, maybe even 45, before I had to worry about the health of my peers.  Granted, my friends tend to be a few years older than me, but still.  Ken isn't even turning 37 for another month.

This isn't a complaint so much as an attempt to get oriented on this new turf.  I mean, it had to happen sooner or later, and the truth is that lots of people have to face the fragility and mortality of themselves and their loved ones much earlier than this.  Yes, I feel a certain amount of dismay and resistance.  That's only human.  I also know that I have to adjust to my new reality.  I must find the courage to stick by my loved ones through hard times as well as good ones.  I want to be a reassuring, uplifting presence in their lives.

My primary goal is to be a channel for faith, love, and joy into the lives of anyone close enough to me to be affected.

Suffering is inescapable.  Faith lies in believing that suffering occurs in the service of a larger plan, one we cannot fully understand, in which suffering leads in the end to something good, something worth it all.  I see how my breakdown led directly to the healing of my relationship with my mother, and I feel that it was well worth it.  I would go through every agonizing minute all over again if I had to, to gain a relationship that I've been grieving my whole life. 

Sometimes it seems that no good will ever come of suffering, but when I think of everyone I know, the people who have been through the darkest times and the most pain are the ones who have turned out to be the most kind, compassionate, and caring people.  Painful experiences break you, and if you have the good fortune to be able to heal, you are reborn with a new heart. 

How do you deal with suffering?

Monday, November 21, 2011


I checked out a new health food store this weekend.  Health food stores have taken on a new importance in my life since I lost the ability to digest wheat.  If I want to have anywhere near the variety of food choices I used to have, my local supermarket will not satisfy.  I need to find my way to a specialty store.

The name of this store is Ambrosia.  It's a bit of a hike from my place.  I had a 15 minute walk to the bus station, a short bus ride to the limit of the Toronto transit grid (Steeles Avenue), and then another 10 minute walk.  I have lived close to this store for 6 years, but because it's not on any of my usual travel routes, I had never been there.

It was worth the trip. I worked in health food retail for four years when I was a student, in a few different stores.  They were all smallish, and some of them very old and grotty.  By comparison, Ambrosia is vast.  They seem to have everything, including foods and product lines I've never heard of.  Supplements, cosmetics and personal care, packaged foods, organic produce, organic meats,  fresh baked goods, bulk foods... It went on and on.  I spent around 45 minutes just making my way slowly through all the aisles, checking everything out.

Highlighted items in no particular order:
Recycled parchment paper (for baking)
Gluten-free dog biscuits
Chocolate-covered kale chips
(For those of you unfamiliar with kale, that's gross.  Kale is a dark, leafy green similar to but tougher than spinach.  I would like to know who buys that product, at $6 for a little bag.)
Organic peanut butter with "fiery hot spices" mixed into the jar (could be good)
A 1.5 oz bag of freeze-dried blueberries for $7.50 (!!!)
Quinoa-milk chocolate beverage (looks delicious but has the potential to be bitterly disappointing)

My rule of thumb if I'm shopping on foot is never use a cart.  Always a basket.  With a basket you have to pay attention to how much weight you're committing to carrying all the way home.  If your arm is tired just carrying it around the store, you'd better put something back.  I loaded up to my maximum carrying capacity.

On the walk back to the bus stop I had to stop and take my sneaker off because there was something in there bugging me, a little stone or something.  I shook out my shoe, and guess what it was?  A grain of organic quinoa.  How fitting.

Friday, November 18, 2011

The Sleepover

This post starts out in a dark place but it has a happy ending, so bear with me...

Since being overtaken by a violent allergic reaction on Monday night, I've been feeling vulnerable.  There's nothing quite like finding yourself completely helpless, your own body out of control, to bring out all your worst fears.  So when Ken announced that he was going to spend a night at a sleep clinic, I relapsed into a panic attack.  What?  Me spend a night alone in my own house?  Are you crazy?  I'm only 39 years old!  Not ready for that kind of independence!

(For the record, I have spent nights alone plenty of times during my adult years.  It's just that Me Sick plus Ken Having Medical Tests looked a little too much like things looked a month ago, during the Very Dark Times.  PTSD trauma flashbacks argh!)

So I did what any self-respecting adult does when feeling fear and doubt.  I called my mother and broke down blubbing.  My lovely mother, who has embodied the very spirit of hospitality lo these past few weeks, did not hesitate to invite me to sleep over.  She didn't need to ask twice.

I showed up at her house after work, wheeling my polka-dot granny buggy.  She cooked a simple dinner and soothed me with plentiful cups of chamomile tea.  We watched Brit-coms and a documentary about an archeological dig in Turkey.  (My step-dad is in Florida playing golf, so we had the house and TV to ourselves.)

It's indicative of how much time I've been spending at my parents' house that their cats have accepted me as part of the family.  Last night was a critical turning point.  They each claimed me in their own way.  Tinker, the tubby one, curled up next to me while we were watching TV, laid his head  in my lap, snuggled up closer, and fell asleep purring.  Doodles took over later, when I went to bed.  He slept next to me, so when I woke in the night I wasn't alone.  What good boys!  (Most of the time.)

Given my state of mind, I hope you won't judge me for admitting that I brought my stuffed toy dog.  He always sits on my bed at home.  I don't cuddle him every night, but if I'm having trouble sleeping sometimes he helps me out.  It just so happens that this doggie is black and white, like my parents' cats.  He's also the same size as the cats, and the markings on his face are almost identical to Tinker's.

I propped the dog up against my pillow while I was getting ready to change into my pj's.  Doodles wandered into the room, hopped up on the bed, caught sight of the dog, and froze.  His eyes dilated and his tail puffed up.  He stared and stared at this creature who looked like his brother, but wasn't his brother.  Was it a cat? Was it friend or foe? The thought bubble over his head said "!!???!!!?"

He started edging closer to the dog very, very slowly and cautiously, not taking his eyes off it.  There was quite a distance to cover between the foot of the bed and the dog on the pillow, so this exaggeratedly careful approach took a while.  When he was 2/3 of the way there, I moved the dog and he jumped back like he was spring-loaded.  Man, it was hysterical.  That was the best laugh I've had in ages.

Doodles finally came around to the fact that the dog was not a threat, although he continued to get a little edgy anytime the dog "moved".  I guess we all have silly fears sometimes.  Even cats.

Tuesday, November 15, 2011

A Busy Week

This past week has been full of business, most of it good.

Ken is mostly over a horrible flu that had him out of commission for at least a week.  At one stage, in a fevered delirium, (while I was at work), he shaved off all his hair because "I was too hot".  In the state he was in he couldn't do a very good job of it, so the poor guy ended up  looking kind of like this skinny pig (including the squinting).

It was pretty sad.  Then of course not fifteen minutes later he hit the shivering stage of the fever, so he had to put on my bright turquoise knitted toque to cover up his scruffy, mostly-bald noggin.  He looks nice in that shade of blue.

Fortunately we discovered some unexpired Tylenol in his medicine cabinet, and once that was in his system he felt a lot better.

He got over the worst of the flu just in time to attend his father's memorial service.  There will not be a funeral as Ken's dad donated his body to research.  The memorial was very sweet.  Ken's dad was, among other things, a fairly well-recognized Canadian visual artist.  He worked in watercolour, oils, ink, and pencil.  He painted the most luminous landscapes.  His friends, also artists, read poems they'd written for him and one woman composed a beautiful song in his honour and sang it while accompanying herself on acoustic guitar.  Ken seemed to get a lot of good energy from seeing all his family's closest friends and sharing stories about his dad.

It was a weekend for family.  I went out with my mother for a stroll and a cup of tea on Saturday.  I showed her the Nexus S smartphone I bought on Friday evening, and she was suitably impressed.  (I'm a little disappointed because this phone doesn't get network service in my office, but then again I do have an office phone on my desk, two e-mail addresses, and instant messaging at my disposal.  For the great deal I got I'll probably stick with this phone and the carrier at least until my monthly arrangement pays off the handset.)

I also had a dinner with the other side of my family: dad, step-mom, sister, grandmother, and some first cousins once removed (I had to look up "wiki cousins" to make sure I got that right).  That was bonus, because three of the six of us are gluten free, so we had an entirely gluten-free meal, including incredible chocolate cupcakes home-baked by my sister, with choco icing, a slice of strawberry, and coconut sprinkled on top.

Work has been going well too.  I feel that I've been going from strength to strength lately.

Everything was going along tickity-boo until I got tripped up by some digestive upheavals last night.  I'll spare you the details, but picture the worst stomach flu you've ever had and you're probably close.  I'm not sure exactly what caused it.  I ate dinner at home, and within 2 hours I was a very unhappy camper.  Let's just say that I am feeling much better today.  My tum is so sore and inflamed that I haven't been able to eat much, just a little bit of brown rice, but I'll get there.  Maybe one more day to get my eating back online and I can go back to work, I hope.

So, maybe this will be the last crisis for a while?  I really feel like it would be fair to have some smooth sailing for a change.  Thank God, Ken has been saying that his heart arrhythmia seems to be getting better on its own, so maybe he won't have to carry on with trying out scary medications or pursuing surgical options.  I think it was the stress of his dad's suffering that was breaking his heart.  Now that his dad is resting in peace, God willing, his heart can heal.

Tuesday, November 8, 2011

Create New Post

On Saturday I changed my shower curtain liner.  The old one was getting kind of ratty.  Also, I bought it in a hurry when we moved in, to "match" my sage green cotton shower curtain - in a shade of nasty, dark, garbage-bag green.  It makes the whole showering experience dim and depressing.

My new shower curtain liner has been sitting around for, oh, maybe a year?  I just hadn't gotten around to putting it up.    But this weekend, in the spirit of committing fully to making positive changes in my life at all levels, I finally changed out the old liner for a translucent, colourless one.  My morning showering experience is much improved.

God or The Universe, as you prefer, is meeting me halfway on this New Good Things commitment.

The Toronto public transit system is phasing in brand-new, high-tech subway trains.  The first two were put into service during the summer.  Every time I took the subway I hoped for a new train, but never saw one.  This weekend I had the luck to ride on the new-style trains TWICE. 

The new trains are worth all the hype, in my opinion.  They are pretty, shiny, and full of neat features.  They have maps with a light for each station that changes colour to show which stations are past, which are yet to come, and which one is approaching.  There are additional LED signs showing you the name of the next station and which side the doors will open on, which is an invaluable little detail.  Most impessive is that instead of having separated cars, the whole train is connected by accordion sleeves, meaning you can walk between cars completely unhindered.  The people who seem to enjoy this most are the crazy ones, as it gives them a wider audience for their antics.  I was entertained by a very well-dressed man (pinstripe suit, shined shoes, brown fedora with a little feather in the band) whose pleasure it was to go down the entire train, stopping for each group of passengers and doing a happy little dance, which mainly consisted of shaking his caboose.  He wore a big, wide smile the whole time, and was chuckling to himself, so who could object?

When I got downtown, I found that the Eaton Centre Mall had opened up their brand new Urban Eatery food court.  They transformed the entire basement floor of the mall for this project.  I have to say, I was very impressed.  I've never been wowed by a food court before, but this one is stunning.  It's enormous, and has been meticulously designed.  Even the KFC and the MickyD's outlets look classy.

Later, I met a friend to see Puss In Boots.  We didn't realize until we bought our tickets that it was a 3D presentation.  I've never seen a 3D movie in my life.  I was expecting to get those red and blue glasses of ye olden days, but as you probably know, there is better technology today.  The movie was fun, but the 3D experience was what totally blew me away.  I am now a convert.  I would like to see all my movies in 3D from now on, thanks very much.

So, the New Good Things thing is working for me.  Now I just have to get my learner's driving permit, and then the real work starts.

Thursday, November 3, 2011

Up from the Darkness

My progress is "miraculous".  This from a medical doctor.  It's as though Glinda the Good Witch of the East touched my brain with her magic wand of calm and contentment.  I may not be quite back to my old self yet, but I'm not far off.  A few more days and I'll find out what happens when I surpass my old self and go even further away from fear, if that's in the cards.

I've always been relatively anxious.  I've fought my fears for as long as I can remember.  Will a day come when it's no longer a struggle?  Could I just relax into acceptance and faith instead of constantly having to talk myself up into deliberate optimism?  A friend told me the other day that sometimes my cheerfulness strikes her as a bit desperate.  She's a perceptive one.

This past week has been busy.  I made some resolutions to boost my confidence in my ability to take care of myself and others, such as learning to cook properly so that I can host people at my home, and spending time every day enriching my supportive relationships.  I have been too introverted for my own good.  I need a bigger dose of quality human contact in my life.

Since Sunday I have:

  • Successfully cooked two kinds of vegetable stew (one based on eggplant, one on butternut squash).
  • Signed up for e-mail updates from the Better Homes and Gardens website, so that I'm constantly being reminded of my resolution to become a hostess with the mostest.  I'm allowing myself to enjoy the creative entertaining and decorating ideas, rather than sneering at them, even if some of them are silly.
  • Spent Hallowe'en with good friends and their 4-year-old son.
  • Had dinner at my parents' house (Ken cooked meatloaf wrapped in bacon with perfect green beans and mashed potatoes with gravy).
  • Returned to work!  I've been able to tolerate it for up to 6 hours at a time.  It's really good to be back.
  • Seen the therapist who works with the psychiatrist I'm seeing, and she was so impressed with my progress and on-the-right-trackness that we agreed there was no need for us to book a series of weekly appointments.  I will call her only when I need some help getting over any roadblocks.

Apparently it takes 6-8 weeks for most people to get back to this much functioning after the kind of breakdown I had.  Can you say "2.5 weeks since I was barely able to get out of bed"?  Ya.  I'm a bouncy one.  Thank God.*

*I mean that literally.  I've been praying lots, and I have felt my old friend JC boosting me up.  It's been a long time since the two of us hung out.  It's a good thing.  There's one more relationship I plan to nurture!

Friday, October 28, 2011

Gratitude and Fear

I am grateful for my my mom and step-dad.  I have been in touch with them every day since the beginning of my breakdown, and lately more often than not I have been spending time at their house.  They have been providing me with hugs, reassurance, encouragement, and tempting snacks.

I am grateful for my furry brothers (my parents' cats).  They have been available for playing and belly rubs.  I have a couple of scratches on my wrist from that time when they were trying to get me through the rungs of the bannister, but it was worth it.

I am grateful for my (human) sister, who has come to visit me for dinner twice in the past week, despite the fact that she lives way across town and doesn't have a car.  She brings engaging conversation and lots of hugs.  Just hanging out with her is good medicine.

I am grateful for the beautiful, sunny days we've been having.  Seeing a brilliantly golden maple tree lit up against a vividly cerulean sky reminds me why living is good. Getting outside for walks has been one of my highest priorities now that I have my strength back.

I am grateful for all the interesting little shops and boutiques around my parents' new home.  My mother took Ken and I out for an exploratory adventure today, and we poked around in businesses such as a store specializing in horseback-riding equipment; a completely gluten-free grocery store/deli/bakery; and a Scottish import store with a wide selection of sporrans.

And of course I am grateful to Ken, who has been such a love to me all this time despite the fact that he is going through his own very dark time.  Currently he is in bed, exhausted as a side effect from a heart medication that he just started taking yesterday.  He had a pretty good few hours in the middle of the day, when we went on our walk, but the rest of the time this stuff is making him feel like crap.

I am having a very hard time being strong.  I know that the medication needs a few days to settle in, and that the side effects might not wear off for a couple of weeks.  I know that the side effects are only uncomfortable and inconvenient, not dangerous. But when I see my husband looking ill and down, and crawling helplessly into bed, I feel terrified.  Every 30 seconds or so I remind myself that everything is OK and that this too shall pass.  I calm down a bit.  And 30 seconds after that I'm back to a state of anxiety again.

I am grateful for Paroxetine for giving me the 30 seconds of calm per minute.  Without the medication I think I'd be a lost cause.

How do all of you get through when you have to watch a loved one suffer?  Have you ever had to face an illness that you didn't trust attacking someone you felt you couldn't live without?  How did you get through and get the better of your fears?

Tuesday, October 25, 2011

Mind Games

Today I went to see a psychiatrist.  It wasn't my first psychiatric visit ever, but probably the first useful one.  I went to see a shrink for a year and a half starting when I was 15, for talk therapy.  It helped a little, but not very much.

This new psychiatrist, Dr. A, doesn't do talk therapy.  He assesses and prescribes.  Fortunately, he's covered by OHIP so I don't have to pay anything for my visits.  Today we started the assessment process, which he said usually takes three sessions.  His very confident initial diagnosis is that I have an anxiety-depression disorder which is causing ALL of my physical symptoms.  He seems very sure that I can be completely cured.  I pray to God that he's right.

His first recommendation is to increase to a full therapeutic dose of Paroxetine, which means I should stop splitting my tablets in half.  I am a tad nervous about trying this, in case of side effects, but ideally this could double the benefit I'm already getting from it.  I still haven't managed to go 24 hours without a panic attack, so that'd be a welcome change.

His second recommendation is that I go for talk therapy.  He doesn't do talk therapy, unfortunately, because OHIP pays crap for it.  It's not worth his while.  However, he does have a wife in the business, whom he highly recommends.  He could be a little biased?  It would be convenient to have them working as a team, and he is so well-recommended that I have some trickle-down confidence in his wife.  At any rate, I am going back on Thursday for a free trial session with her.  We'll see how that goes.  If it goes well I'm in for some expensive talking, but I have saved for a rainy day, and it sure as hell is raining now, so I guess this is what I saved for.

Actually even if it doesn't go well I'm still in for it; it just means I have to look a little further afield to find the right person.  I have at least one more recommendation I could look into.

In general it's all great news.  I won't hesitate to invest whatever it takes to get well.  I couldn't be more thrilled to be mentally ill.  Anxiety and depression are well-known and widely-treated.  They are infinitely preferable to having a mysterious physical condition which is little-researched and has no known cure.  Stigma?  Whatever.  I would walk around every day wearing a bright pink T-shirt that says "I have mental disorders!" if that was what it took to put hope on the horizon.

Aren't I just the most optimistic and cheerful chronically depressed person you ever met?  Man, the brain is a funny, funny thing.  I'm already looking forward to doing stuff I've never been able to tolerate.  If I can tame my fears I could learn to drive, enjoy travelling, try all sorts of new things...  Please God let this work!  I have my hopes up.

Finally, I must mention that Ken's father finally passed away this morning, shortly after midnight.  It is a mercy that he's gone.  He was suffering horribly in his last days.  Ken is doing alright so far.  He was as ready to let go of his dad as anyone can be.  I'm glad that I'm feeling well enough now to be of some support to him.   These times have been rough, but I think the two of us are going to be OK.

Friday, October 21, 2011


One week ago today I was barely able to get out of bed.  I was in constant torment and could barely eat.  My family was seriously discussing checking me into an inpatient program at the mental hospital.

Three days ago I was mobile and up watching TV for much of the day, and even got out of the house for two little five-minute walks around our property.  I was afraid to climb stairs because the last time I climbed a flight of stairs my heart started racing.  But I did it.  I climbed up and down the three little stairs that are built into the walkways around my building, and felt a huge sense of accomplishment.

Two days ago I got dressed and Ken drove me over to my parents' house.  I brought an extra plastic bag in the car in case I had a panic attack that made me sick to my stomach.  (I hadn't actually hurled but was into some serious retching as part of my panic symptoms, as recently as that very morning.)  I was nervous but OK during the car ride.  It was the first time I'd been anywhere in two weeks.

I sipped watered-down scotch and let Ken do all the talking.  Mostly I held myself very still and tried to breathe through the panic, or tried to hang on to what delicate state of relaxation I had achieved by not moving and not talking to anyone.  When I did start talking a little later in the afternoon, it came out mostly as incoherent sobs.  I cried all over my mother and all over Ken, telling them everything I was afraid of, which was basically everything in life, while they gave me lots of hugs and tried valiantly to reassure me.

That evening, still at my parents', I ate dinner sitting up at a table for the first time in two weeks.

Yesterday morning the panic was still there, but no retching.  Ken went out on an errand and I didn't melt down from fear of abandonment.  Then Ken returned and asked me if I wanted to go out for lunch.  I figured that if the panic is all in my head there's no time like the present to get back on the horse, so to speak, so I got myself presentable and we went out.

We were seated in a friendly all-day-breakfast restaurant with brightly cheerful decor including a wallpaper border of chickens running all around the walls and booth dividers.  A chipper, blond waitress brought us menus.  I was as terrified as I might have been in a dark, slimy dungeon being confronted by a jailer-torturer.  At first I wasn't sure that I could manage to stay.  Then it took all my effort just to choose something from the menu and ask the smiling waitress for it.  I wanted to run home and hide under the covers.  However, I managed to eat around half of my western omelette with fried potatoes, and the fear did ebb away a bit after the first 20 minutes.

We went to the bank and I deposited a birthday cheque from my grandmother that had been sitting in my wallet for two-and-a-half weeks, since getting to a bank had been out of the question.  That was another major accomplishment.

Then we went back to my parents', where, exhausted by the effort of eating lunch out and going to the bank, I fell asleep on their couch.  Later that evening I started feeling almost like myself again.

This morning I woke up feeling better yet again.  The panic is still there, and always worse in the morning, but this time it was just uncomfortable, not disabling.  I didn't feel the need to dissolve in floods of tears when Ken asked me how I was feeling.  I have left a message for a well-recommended psychiatrist, so it won't be long before my medication habit is being professionally evaluated.  But it's pretty obvious to me that it's working.

There are a couple of good things that are coming out of this ordeal.  The first is that I'm renewing my relationship with my mother.  I've always been on pretty good terms with my step-dad, as we sometimes work together, but I had been keeping my distance from my mother over the past couple of years, due to self-preservation, as my parents went through their separation and reconciliation.  I couldn't spend too much time with her during that phase - it was literally exhausting.  I felt that she needed so much from me and I couldn't ask for anything from her in return.  Now she is supporting me, and the balance is returning to our relationship.

She's also really happy to have me and Ken hanging around her new house every day.  Since she moved a month ago she hasn't felt very at home in the new place, but she says now that it's filled with her family she's starting to feel settled-in.  We're going back over there for dinner tonight, and my step-dad is happy to have us too.  We're breaking in that new house and making it into a home.

The other thing might turn out to be even bigger.  Now that I see the power of mental stress over my physical health, it's making me question where my ME symptoms come from.  It's a bit of a chicken and egg situation because ME can cause anxiety and depression, and anxiety and depression can cause physical symptoms, so it may be impossible to sort out which came first.  However, the question is: if a capable psychiatrist can supervise a proper course of medication for my poor, bustificated brain, will that cause my ME symptoms to lessen or even disappear?

I mean, think about it.  If pure stress was enough to weaken me to the point where I couldn't get out of bed for more than a few minutes without collapsing, certainly it could be at fault for any of my lesser symptoms.  There's only so much will-power and positive thinking can do to fight that kind of problem.  The undertow of my subconscious mind is frighteningly powerful.  If those fear reactions can be tamed, will that release me from some or all of my physical restrictions?  If so, this whole ordeal will have been well worth it.  A week of hell is a small price to pay for increased freedom for the rest of my life.

Some people need to bottom out before they can get off drugs.  I had to bottom out in order to learn that I should be on drugs.  This may turn out to be a turning point to a much more positive future.  One of the best things to ever happen to me?  Let's hope so.  Keep your fingers crossed.

Monday, October 17, 2011

Paroxetine the Wonder Pill

I never thought I'd be a happy pill-popper, but that's how life goes.  You never know what's around the next corner.  It might be a complete and utter nervous breakdown.  And then it might be a teeny-tiny, rust-coloured half-tablet that saves your freaking life.

Paxil, a.k.a. Paroxetine in the generic version, is one of the most bizarre things I've ever come across.  I swear that in the half-hour after I take each dose I can feel the stuff re-arranging my brain.  Weird sensations course down every nerve in my body, like cold water mixed with a slight electrical buzzing.  And then, day by day, it gives me back to myself.

It's only been 5 days since I've been on it, but apparently it's not uncommon, in my step-dad's doctoring experience, to get results this fast.  Just a few days ago I had to sit on the floor to brush my teeth (spitting into the toilet) because standing up for five minutes would raise my heart rate enough to trigger a rush of panic chemicals that could last for hours.  It was like being caught in quicksand that sucked me down the more I fought against it.

Today I'm dressed in clothes I could wear outside, and even put on some makeup so that I didn't scare myself every time I looked in the mirror.  For the first time since last Thursday I can tolerate sitting up with my feet on the floor indefinitely.  And I'm eating.  Thank God for that.  Food actually tastes like it should again.  For days everything I put into my mouth made me want to gag.  Every texture was nauseating, and every taste was too strong.  Today I'm trying to pack in as many calories as I can, complete with big glasses of chocolate soy milk, handfuls of caramel popcorn, and potato chips.  It's a tough job, but I've got to think of my health.

It's doubtful that I'm going to have any side effects at the low dose that I'm on (5 mg).  Dr. Dad says I'd be experiencing them already.  There's also a less than 10% chance of a severe withdrawal effect if I ever try to come of it, but pffft.  Do I care?  I am not planning on ever coming off this stuff.  God willing it'll serve me well for the rest of my life, putting my hyper-sensitive nervous system back on a level playing field with all the healthy people.

I've still got a ways to go before I'm back to my normal, but I can see now that I'm going to get there.  I'm gonna keep on truckin'.

Saturday, October 15, 2011

Good News Post!

Let's all join together in a big sigh of relief.  I am feeling much, much better today.

The turning point came last night.  After another tortured day of feeling too physically overwhelmed to get out of bed, I was at my wits' end, and so was Ken.  I had not been able to eat much for the last few days, and since I don't have a spare pound anywhere on me, this was frightening both of us.  Ken kept encouraging me to eat, but I had very little appetite, and half the time when I did eat I felt sick afterwards.  I was so wretched and he was so worried that we summoned my step-dad again.

My step-dad has a remarkably reassuring presence.  Nothing seems to phase him.  Sometimes this is a problem, because he doesn't worry about things that in fact merit his concern.  My mom is always after him to pay more attention to unpleasant realities and details.  He's a very "don't worry be happy" kind of guy.  So while this may be a mixed blessing, it's definitely a boon anytime there is a crisis.  Even when he's quite concerned, as he was in this case, he always stays calm and always seems to know what should be done.  I haven't had to call on his help very many times in my life, but boy was he there for me this past week.

(At this point I also want to give a shout-out to my bio-dad, who showed up on Tuesday bearing lunch and a big pot of yellow chrysanthemums.  He also has a very reassuring presence, and offered to be there for me in whatever way I might need.  I called him in tears at least once (the details are already fuzzy on whom I called when these past nightmare days), and he was rock-solidly there for me.  I am unbelievably lucky having two dads to lean on.  Frankly I needed all the parenting I could get this week, so lucky me - suddenly that childhood divorce is bearing dividends.  Two sets of parents!  My mom has also been there for me by phone every day, and my step-mom generously offered that I could "lean on" her and my bio-dad.  Step-dad gets to be the big hero because a) he's a doctor and b) he and my mom live much closer to me than my other set of parents.  However, I am quadruply lucky that I know I could call any of my fantastic team of super-parents at any time of the day or night and they would be there for me.)

So, my step-dad showed up and said he'd been thinking about the situation, and in his professional opinion my main problem at this point wasn't the myalgic encephalomyelitis per se (although that was definitely playing into it) but that the physical symptoms which felt so much like extended panic attacks were, in fact, extended panic attacks.  ME can definitely change one's brain chemistry by suppressing all the nice neurotransmitters, like GABA and serotonin, which keep one calm, balanced, and sane.  Anxiety and depression are listed among the official symptoms.  Take that and add on all the stresses that I've been going through this summer, and it created a perfect storm.

So, ta-dah!  The good news is, most of my problem is in my brain!  It's simply a mere panic disorder!  This is much better than what I thought might be happening which is that the ME itself had taken my body down a road to complete and utter destruction on all fronts.  When I was working with that hypothesis, it seemed like everything was going down the tubes and I might actually waste away and die.  It is possible to die from severe ME, or to get so sick that you wish you were dead but don't die for ages, and there are way too many unfortunate people suffering unspeakably in that condition which I have read about online and thereby filled my imagination with worst-case scenarios. I have read a quote by a doctor saying that ME can be like the worst of MS, lupus, and AIDS all rolled into one.  Obviously this information seared its way into all levels of my consciousness and scared the living crap out of me.

When I crashed after the simple task of taking the bus home from work, on one level I was in shocked disbelief that I could be so disabled, even if it might only be temporary; on another level I was frustrated beyond my limits by falling seriously ill again only three days after my careful and otherwise successful return to work; and I was desperately trying to strategize how to maintain any form of normal life in this state of unpredictable fragility.  It had never been that bad, and I guess at the deepest level I lost faith that day that there was a limit to how low I might get.  It felt like I was losing my whole life at an accelerating rate: all my thoughts were shot through with horror at how vulnerable I have become, terror at being so helpless, and an endless cycle of desperately calculating how I could possibly carry on with such reduced stamina.

It was all mixed up with the continued worry about Ken's heart condition (he has a consultation on Monday to see if he's a candidate for that outpatient surgical procedure), my Zaidy's death, the politics on my mom's side of the family which have been greatly exacerbated by Zaidy's death, big projects afoot at work, and a million other things that a mind can find to worry about.  

I still don't really know how to face up to all of that crap, because it hasn't gone away, but at least I can tell myself that I'm not going to die a slow and agonizing death in the foreseeable future.  As soon as I accepted that my symptoms were a result of pure panic, a lot of the anxiety abated immediately.  Today, although I still feel quite drained, I am miles better than how I was feeling yesterday.  I guess now that that's taken care of I just wait to see what happens when the Paxil kicks in.  Four more days and hopefully the magic pills will start to cut those other worries down to a more manageable size.

It's going to be a slow road, one little step at a time, but I'm going to get my life back.  You hear me?  I am!

Thursday, October 13, 2011

This had better be rock bottom.

I'm still hanging in there, but I am sicker than I've been in my adult life.  I'm not able to get up out of bed for more than a few minutes at a time.  Besides staying sane, the biggest challenges I'm facing are maintaining basic personal hygiene (which I am managing, thank God, although not quite up to my usual perfect standards) and trying to eat enough to not shrink away (although I only have so much control over that because forcing myself to eat beyond my tiny appetite just makes me feel nauseous).

I think it would be fair to call my situation a complete physical and nervous breakdown.  My nervous system is hyper-stimulated, and it's creating a self-reinforcing cycle of stress that I'm not sure how to break.  I am running a fever which is why I am so weak.  I can't take NSAIDs so there's not much I can do to bring the fever down.  At certain times in the day I have enough energy to accomplish some small tasks, like take a 3-minute shower, and at other times just shuffling to the kitchen for some juice is enough to make my whole body feel totally stressed.

And when I say stressed, I mean super-stressed.  I mean heart-pounding, adrenaline surging, short of breath, nauseated, anxiety spinning out of control stressed.  At first there was nothing at all that I could do to address this, so I was spending hours each day after the smallest triggers riding out these waves of psychic suffering like a panic attack that just won't quit.  Then finally I figured out that a little sip of vodka in water acts as an emergency brake.  If it can't stop the feelings entirely then at least it dials down the volume to a bearable level.

Of course psychological stress plays into it too, and there's plenty of that to go around.

It was my step-dad who suggested I try vodka.  He's a doctor, so it's an official doctor's order.  He knows that I don't tolerate sedative medication, otherwise he would have set me up with some Valium.  I think it was the 3rd day of trying to tough out the sensations when I cracked.  It feels like pure suffering.  I couldn't do anything but lie on the couch watching the clock tick and praying for it to pass.  On the third night I was trying to get myself into bed, when I just gave up and lay down on the floor with my head on my folded-up pj's.  Ken, beside himself with worry, got me to lie down in bed.  I cured up in the fetal position and told him to call my step-dad.

My step-dad showed up, checked my vital signs, and pronounced me relatively fine, despite my discomfort.   Could've fooled me.  I was ready to lie down and die.  Since then, he's been on the case to help me get well.  He has consulted with his colleagues.  Thank God for his help, because there is no way I could tolerate getting to a doctor's office.  I can't even sit up beyond a 45 degree angle for more than a few minutes.

What was decided was that I should start on a low dose of Paxil, an anti-depressant.  It's not that I'm depressed per se (although I can't say that I'm cheerful about my situation).  It's that it seems the best way to try to get my neurological chemistry under control.  After 39 years of fighting through all sorts of tough times without medication, this morning I gave in and took my first little pill.  It seems like my best hope of getting my life back.  Please wish me luck.  I won't know how it will work out for at least a week, and then it's a question of will it do what I need it to do, and will there be side effects, will we have to try a different drug, etc.  I am praying for a home run on the first pitch.

I'm just trying to get through one day at a time.  Sometimes, especially when the stress chemicals start to flow, I feel desperately miserable.  I am terrified by how vulnerable I have become, unable to even fix a meal for myself.  When Ken has to leave the house even for a short time I feel like a lost child.  I have my mom as backup, although she hasn't needed to come by yet.  I'm more comfortable with just Ken.  Having other people around is overstimulating, so despite my loneliness and desperation for company, I've been telling people not to drop by.  Even certain TV programs are overstimulating.  I'm making do with radio, podcasts, and reading.  This is the first time in a few days that I've attempted to use the laptop and I'm actually pleasantly surprised at how well I'm doing with it.

I wish I could have more engaging distractions.  I'm reading a wonderful book, but alongside the voice in my head that is reading it is another voice going over and over all my worries about the future.  I have to keep going back to re-read sections because I've been distracted by the worry voice. I can't get that second voice to shut up.  I wish that I could get up and putter around the house.  It's impossible to keep from worrying when you can't occupy your mind with some other task.  And the really crazy, impossible fact is that there are plenty of people sicker than me.  How do people spend months in the hospital without cracking up permanently?  I hope I never have to find out.

Anyway, this is a long and rambling post because I've been saving up all this junk in my head and have been desperate to be well enough to write it down.  So I guess I can take it as a good sign that I feel up to being online today.  It's hard to define progress since I've been up and down so much over the week, and gains made today might be lost again tomorrow - but then again they may be retained.

All hugs, prayers, and words of encouragement are greatly appreciated in advance, in case I'm not able to be online to reply to comments.  Love and hugs to you all!

Thursday, October 6, 2011

Breathe In, Breathe Out

Yesterday things were looking good.  I woke up before my alarm clock.  I felt optimistic enough to dig my lightest hand weights out of the back of the closet (I graduated from those little things months ago and hadn't looked back since) to do a few arm exercises.  I went to work and had a day that felt almost normal.   So when it came time to leave, instead of calling for a cab I decided to try taking the bus.

There is a bus stop right outside the building, but that bus only comes once every half hour.  It's a beautiful walk, slightly over 10 minutes at my normal walking pace, to the next major intersection, where the buses come on average every 5 minutes.  I had been cooped up inside for so long, and I wasn't carrying anything heavy.  I took the longer walk.

By the time I reached the bus stop, my legs felt heavier than when I'd started, but everything else was fine.  The bus came quickly and I got a seat.  It was all good.

When we pulled into the station and I had to stand up, I realized how exhausted I was. Uh oh.  Too late now.  That's the problem with this condition: there's no fuel tank indicator to warn me I'm running near empty.  I'll think I'm well enough to do something,  and by the time I figure out that's not so, it's too late.  I had a five minute walk to the taxi stand, and then I had to wait for a taxi.  I was spent.  I couldn't go to work today, and probably won't tomorrow.  There are other symptoms too, but I'll spare you.

As if that weren't enough, I was lying on the couch, drained to the dregs after a short day of working from home, when Ken came back from his cardiologist appointment. He requires a catheter ablation procedure.  They are going to schedule it in a couple of weeks.  This is a fairly simple procedure with a very low rate of risk, but still.  He's my husband.  He's going to the hospital so that doctors can stick a probe into his heart and mess around in there.  I can't not worry.

Ken also produced a bottle of medication that the doctor had prescribed for him.  We're both a little scared for him to start taking it, due to the risk of side effects and all that.  As a matter of fact the medication looks riskier than the surgery.  He decided to start taking it tomorrow morning, so that if it slows his heart down too much he'll be awake and we'll be able to deal with the situation safely.

As if that weren't enough, Ken found out this morning, just prior to his cardiologist appointment, that his dad was moved into a hospice.  I could tell you some details about that situation that would cause your heart to break too.

Things could be worse.  We have our comfy home and savings in the bank.  My boss is cooperating with me on finding ways for me work as effectively as possible without overdoing it.  We have supportive family and friends.

Although I'm not planning to lean on anyone else too heavily. Right now just about everyone I know is wading at least hip-deep through their own swamp of personal crap.  Everyone has health worries and/or child-care worries and/or elder-care worries and/or financial worries, etc.

People say kind things but when you come right down to it we're all stretched pretty thin.  You can't expect more from anyone than a sympathetic ear and a little encouragement.  (A little can go a long way.)  It doesn't help that none of my support people live in my neighbourhood.  Lately I've been feeling very physically vulnerable due to being so weak and effectively isolated.  I've been worrying over and over "What will become of me?  What will become of us?"  There are no answers.

I keep tripping up because I've been basing my estimations of my own strength on past experience.  This is the worst crash I've ever experienced, so I guess none of that past learning applies.  I've never been this slow to get my energy back.  I wonder if I will ever get it all back.  I wonder if I am permanently disabled.  I'm too weak to leave the house today, again.  It's scary.

I've been trying to watch uplifting and humorous movies and TV shows to distract myself, but there's only so much you can stuff that kind of fear under the rug of cheerfulness.

Right now I'm deliberately slipping into survival mode.  Just get through each day, and if that gets too tough, just get through each hour, or each five minutes, or each breath.  Beyond making sure there are enough groceries in the fridge for the next meal, try not to think of the future.  The future will have to take care of itself.

Saturday, October 1, 2011

A Happy New Year Story

Wednesday evening was Rosh Hashanah - Jewish New Year's eve.  In the Jewish calendar the year is now 5772.  Welcome to the future.  The future is now.

Normally my family would gather at my middle aunt's house to celebrate the occasion, however middle aunt and her family are travelling in Israel.  One of my mother's many cousins invited us to celebrate with her and a variety of close and distant family members.  It was a good thing.  We were able to mark the holiday, which is an important family tradition.  At the same time, we were able to avoid an immediate family gathering so soon after Zaidy's death.  If it had been only the usual suspects around the usual table, his absence would have been very vivid.  This way there was no empty chair to make everyone feel sad all evening.

My mother's cousin R and her husband T live in a lovely, big house.  It's filled with beautiful paintings done by R and by her late mother, Auntie A.  R and T have three kids, whom I last saw around 20 years ago.  Their eldest son is now working as a hazzan in London, England.  Their daughter, whom I remember as a little girl, is in medical school.  And the younger son, who I remember as a six-year-old with a headful of blond ringlets, is now doing his Ph.D. in mathematics.

Two elderly cats live in the house.  The dinner guests kept leaning down to say "Here kitty kitty!  Aw, isn't she cute!"   "Be careful," warned our hosts, "they're incontinent.  And they throw up everywhere.  Does anyone want to take them home?  You can have either or both for free."

I have always thought it was very cool that R and T's house has an elevator.  R has rheumatoid arthritis, and since it was impossible to predict how bad it might get in the future, T had a little elevator installed in the house when they moved in.  Fortunately R is doing well and is completely mobile.  I'm sure the elevator comes in handy anyway.

When we were seated at dinner I ended up sitting beside the younger son, the math Ph.D. student.  I asked "Is there any way that you can explain what you're studying to someone like me in a way that I can understand it?  At all?"  In fact he could.  For the record, he is investigating algebra-geometry equations that involve counting the number of points along a particular curve.  Apparently this is applicable in cryptography, for example, in the algorithms that are used to secure transmissions such as cell phone calls.  The conversation floundered a bit after that, because what can I say about encryption algorithms?  Er, neat!  *crickets*

Later we talked about more normal things, like how many puns you can make on the word challah.  Ken came up with the Challah-Deck, which would be a Star Trek-themed Jewish restaurant and bakery.  Math son came up with Challah-Back girls.  I asked if anyone has got around to marketing a candy called Jew Jubes.  I just Googled it and apparently it's getting some use as an offensive phrase.  That's too bad.  It has so much potential.

After dinner we gathered around the enormous TV in the family room to look at scans of old family photographs.  The generation ahead of me was making all the points in the game of "Identify That Relative!"  Most of the photos were from the 1930's and '40's. I saw pictures of my mom between the ages of 3 and 12 that I'd never seen before.  For some reason there was also a shot of my younger aunt and cousin R each perched on one of Santa's knees.  How is it that two Jewish kids (of observant parents) had their photo taken with a mall Santa in 1966?  These are the mysteries of our mixed-up culture.

Dinner was lovely and a good time was had by all.  See?  Good Adventures in Sparkland are not over yet!


I went back to work for the first time in 2 weeks yesterday.  Hoo boy, that was so much harder than I thought it would be.  I figured if I could work at home, sitting up at a desk, and talking to people on the phone much of the day, how different would it be to do it at the office?  My fever was gone, I wasn't collapsing for a nap mid-afternoon, and I was talking slow walks around my neighbourhood a few blocks at a time.  It seemed like the right time to go back.

I was happy to return.  Besides the fact that I'm clean out of paid vacation days, I was starting to go a little psycho from being stuck at home.  I thought I'd go back, sit down at my desk, and although I might be a little tired I would primarily feel relieved.

The experience was overwhelming.  One symptom of Myalgic Encephalomyelitis is nervous system hypersensitivity, and that kicked in big time.  Being around so many people, even on a quiet Friday, was very difficult.  The sensitivity manifested in physical-emotional stress: waves of anxiety almost like a panic attack that crested for a few minutes at a time with a few minutes of calm in between each wave.  I thought if I could tough it out and show my body that there was nothing to be afraid of it might pass, but it didn't.

(I had successfully pushed through similar feelings of overstimulation at a Rosh Hashanah dinner on Wednesday night, surrounded by a crowd of happily enthusiastic relatives.  Between the first course and dessert, the anxiety went away and I was able to enjoy the rest of the evening.)

By the time I got home I was feverish and so overwhelmed by feelings of anxiety that I couldn't to do anything but curl up on the couch and try to breathe through it.  I wasn't able to eat the lovely dinner that Ken cooked.  I went to bed and dreamed that I was in a hospital, where I felt safe because the medical professionals there would know how to make me feel better.  When I woke up I was disappointed that there was no such hospital.

This morning I'm doing a lot better.  I had a good sleep.  When the anxious feelings tried to come back, I did half an hour of yoga and that calmed me right down.  I have almost nothing that I need to do this weekend.  Hopefully I can continue to rest and recuperate so that I feel significantly better by Monday.  I committed to attending an important project planning meeting at 2 pm on Monday.  Of course like anything it could be rescheduled (or it might be possible to attend by phone), but I am trying to hold faith that I'll be able to do at least half a day of work without falling apart by then.

I have to walk the line between wretched, depressed hopelessness and ignorant overestimation of my abilities.  That is not an easy balancing act.  I obviously cannot successfully predict how I'm going to feel from one day to the next, or what my limits are going to be.  I'm confused and worried, but trying to stay positive.  I've been heading in the right direction, but I need to get a little further yet before I'm out of the woods.

Sunday, September 25, 2011

Getting There

That's my stock answer when people ask me how I am and I can't tell them "fine".  "I'm getting there."  I say it even when I don't even believe it myself, or when I'm not sure where "there" is.  At least it sounds optimistic.

Today, however, I truly am getting there.  Yesterday evening my fever finally broke, after a week.  I was starting to think it might go on for months.  It felt like it had already been months.  When I saw the normal temperature on the thermometer, I was ecstatic.

I'm going to my Zaidy's Shiva this evening.  It will be the first time I've seen any of my relatives since before his death.  My friend Val came to my home and sat with me during the afternoon of his funeral.  I showed her some photos of him but in the end we talked mostly about other things.  Every time I got emotional I got so short of breath that I had to lie down or I felt I would faint.  I figured I'd better put that grief on a shelf until I have more stamina.  There will be all the time in the world to miss him and remember him later.

I'm going to take it very easy this week.  I plan to work primarily from home.  If and when I do go in, it'll be for half-days.  I cannot risk triggering myself again.  In order to help myself, I have written some Rules of ME Survival.  These are the lessons that I seem to forget in between crashes, so I need to be reminded of them every day.

  1. If you "feel fine" but the thermometer says your temperature is up, shut up, lie down, and rest.  The thermometer is always right, and you are always too optimistic.
  2. Do NOT exercise while your muscles feel weak, not even with the lightest hand weights. Overexertion in this condition can actually kill the DNA in your cells, resulting in cell death.  This is a medical fact. You will be more prone to muscle cramps.  If you trigger a back spasm the pain will trigger a downward stress spiral.  DON'T RISK IT.  Mild stretching ONLY.
  3. Do not attempt to stand for long periods of time relative to your strength.  Same thing for walking.  Slow baby-steps only, and sit down BEFORE you're exhausted.
  4. Outdoor environments are more stressful than indoors due to temperature variations. Go outside minimally: only as much as you need to to stay semi-sane.
  5. Social activities are exciting, and excitement is a positive version of stress.  Therefore, minimize socializing to phone calls during a crash.  Re-introduce social activities slowly, and if in doubt CANCEL, even if it is something you were really looking forward to, or something super-fun, or if you already have the birthday gift and card ready to go.  A few hours of fun can lead to a week of illness.
  6. Although you hate taking cabs because they are expensive and smell funny, do NOT attempt to take public transit for at least 3-4 days after returning to work.  Start with a half-day of work, and increase from there.  Work from home when possible.  While you are still tired you are at risk of triggering a fresh crash. 
Believe it or not, there is a way in which I am struggling to accept the fact that I have a chronic illness.  Despite the fact that it's been in my life for 8 years, I can't get used to the idea.  I've coped via denial and bottomless optimism for as long as I can remember, and trying to turn that train around is no easy task.  

I now have complete sympathy for all the people who stop taking their meds when they feel better, no matter what their ailment may be.  It's my personal experience that humans are able to understand "the present" in a time span no longer than three weeks, so whatever condition persists for more than three weeks feels convincingly permanent.  If I feel healthy for three weeks or more, it's easy to forget how vulnerable I am.  It stops feeling real.  (Conversely, once I've been ill for three weeks I start to believe that I'll never recover.)  This is all quite predictable, and even knowing this doesn't take its power away.

In order to hammer home the reality of my situation (and because a doctor relative of mine advised me to do so) I've started a symptom diary.  This will hopefully force me to think about my ME every day, even when it's not actively causing problems.  I have put my Rules of ME Survival at the top of the journal document.  The stupid and annoying thing is that there's nothing so dangerous to me as feeling healthy, because that's when I will over-exert myself.  Somehow I need to minimize that as much as possible.

Wednesday, September 21, 2011

A Bittersweet Ending

At 6:00 pm on the button yesterday, my grandparents, Buby and Zaidy, called to wish me a Happy Birthday, as they have done every September 20th since I can remember.  They wished me good health and blessings.  Zaidy said he hoped he'd have the chance to wish me these things again next year.  Then, with love, they rang off.

They sat down to dinner together.  After the meal while my Buby was getting Zaidy his cup of tea, he slumped over.  She called 911.  The paramedics made attempts to resuscitate him, but in the end they couldn't bring him back.  He was 94 years old.

My mother called me at 9:45 pm with the news.

I don't think he could have asked for a better death.  He was in his own home, at his own kitchen table, with his beloved wife.  It doesn't seem as though he suffered.  I will certainly miss him, and feel sad that he's gone, but I'm more worried about my mother and my grandmother and my aunts than about myself.  I can let him go.  It was his time.

My Zaidy was a man to be reckoned with.  In his prime he was 6'3", strong and lean.  He had high standards and a short fuse.  He was not easy on his three daughters.  He used that inner fire to blaze a trail into the aviation industry at a time when anti-semitism made that a very tough path.  He got his pilot's license, and served in the Canadian Air Force as a test pilot and airplane mechanic.  After the war he flew private jets for CEO's, and later still he became an airplane salesman.

He was in a plane crash once, during the war.  He and two of his colleagues had just fixed an engine on a two-engine plane, and had taken it up for a test-drive.  The other engine died, and they went down.  He pulled open an escape hatch as they were falling, and was able to crawl away from the wreckage.  The other two men lost their lives.  He had scars all over his legs, or so I'm told, since I never saw him wear shorts.

He had dozens of other aviation stories, which he recorded in a self-published memoir.  My mother has a copy.  It reads like an action movie script.  One time he saw a man get decapitated by a propeller that was turned on at the wrong time.  

To me my Zaidy was the absolutely solid, reliable patriarch of the family.  He was larger than life.  He always sat at the head of the table.  Before he went blind, he drove an enormous burgundy Cadillac, with wine-red velour seats.  He watched hockey and football from a giant-sized, dark brown leather La-Z-Boy recliner in the den.  He had big, bushy eyebrows and a deep, booming voice.  He was always slightly disappointed that he never had any sons or grandsons.  He ended up with three daughters and three grand-daughters, to his occasional chagrin.  It was a family joke, which he played along with, that he ate "Ogre Flakes" for breakfast.

And of course as he aged he got more mellow and sentimental.  No longer an ogre, he became a sweet, frail old man who never got tired of telling his family how happy he was to be with us.

My only regret is that I will not be participating in my family's memorial service and funeral tomorrow.  I had just started to feel a tiny bit better by yesterday evening, enough to feel that things were on the upswing, when I got the phone call.  My fever shot back up within the hour.  Today between waking up and crashing hard I managed 5 hours of uptime.  If that's where I hit the wall in my own home in my jam-jams, there is no way I'd be able to tolerate the stress of the funeral.  I cannot risk fainting at the cemetery.  I can't put other people in a position where they have to look after me instead of participating in the ceremony for Zaidy.

Ken has been representing for our team, ever since we got the call last night.  He rushed off to the hospital, he helped organize the family for the night, he went to the funeral home this afternoon and helped my Buby to pick a casket. (They chose a shiny reddish one, like the cars Zaidy used to drive.  He would have liked that.)  I truly, truly wish that I could be there, to support my family, but I'll have to send my best wishes from home.  I will say goodbye to him my own way in my own time.

I don't mind sharing my birthday with the anniversary of his death.  I will always be glad for an opportunity to remember my Zaidy.

Tuesday, September 20, 2011


The good news is that my heart is in great shape.  The bad news is that to find that out I spent $160 on a heart monitor that I didn't really need.  It's not returnable.  The only useful bit is the wrist part that doubles as a digital watch.  I've been meaning to get a legible timepiece to put on my bureau.  This heart monitor is my new, very expensive digital clock.

My resentment at the heart monitor softened this morning when it did something very thoughtful: it remembered my birthday.

Isn't that cute?  It got me a digital cake.  Even more thoughtful is that this cake does not contain anything that I'm allergic to.  It also contains no calories.  It is almost the perfect cake.  If it were tasty it would be perfect, but sadly when I licked the watch face it was bland.  Oh well, as they say you can't have your cake and eat it too.

I took the day off work for my birthday.  Sort of.  It might be more accurate to say that I haven't been to work since last week.  My Art In the Park adventure turned out to be too much, and even though I knew my temperature was up I defiantly went out for dinner with my parents that night, thus almost fainting into my bibimbap  and sealing my fate of more downtime.  I am supposed to be a smart person but sometimes I think I'll never learn.

I mentally disciplined myself, and didn't even think of leaving the house for the next two days.  I went out for a baby-steps walk close to home this afternoon, for 20 minutes, and have shown admirable restraint by resisting Ken's offer to take me out for a special birthday dinner.  I am in that dangerous zone in which I feel well enough to say yes to outings that sound fun and harmless, but am still fragile enough to get knocked back onto my butt.  I did drop a hint that I would be very pleased if Ken felt like bringing me home some yummy take-out.  

Ken has already more than done his husbandly birthday duty by cleaning the house, AND gifting me with two beautiful pairs of pearl drop earrings: one plain white, and the other pinkish with little diamonds.  They are stunning.  I am wearing the white ones, with my pyjamas.

Saturday, September 17, 2011

Rocking On

There have been times when the significant man in my life has hefted my handbag and asked me "Whatcha got in here anyway?  Rocks?"

Today, the answer was "Yes, I do.  You wanna make something of it?  'Cause I'll hit you with my purse if you tick me off."  I took a stroll through an outdoor art show, and bought something made out of a fist-sized stone.  I cannot tell you exactly what it was because it's a gift for someone who may read this post, and I want it to be a surprise.

I bet everyone reading this post is now hoping that they are that person.  Oh boy, a rock!  I sure hope it's for me!

Trust me, it is a very nice rock.

It was a big treat to be out and about today.  It was the first time I've gone out and purely enjoyed myself for a couple of weeks.  Blue skies, interesting people, lots of cute dogs and babies, and a variety of neato created objects.  The prices at most of the stalls were a bit out of my range, but it was cool just to see it all.

Last weekend Ken and I went to my cousin's engagement party.  I'm glad that I went to wish her and her man Mazel Tov, but unfortunately my body was not cooperating.  I felt faint and we couldn't stay long.  I went back to work on Wednesday, but I'm not at 100%.  I still have that attractive ancient-person shuffle-walk.

Of course I have continued to obsess about ME.  I think it's going to be a while before I'm done rabidly consuming all related information on the internet, and speculating about how I can apply it to my situation.  For example, I have heard several ME people say that wearing a heart monitor is helpful in that it helps you to listen to your body and avoid overexerting yourself.  So naturally I immediately purchased a heart monitor.

A little research revealed that, ironically, the place with the most selection in wristwatch-style heart monitors is The Running Room.  Ken drove me to the nearest location.  A helpful saleswoman approached us.

Saleswoman:  Can I help you?

Me:  I'm looking into getting a heart monitor.

Saleswoman:  What length of marathon are you training for?  Does it need to have GPS?

Me:  Er... not so much.

I explained that I wanted something to monitor myself for a medical condition.  She brought out a number of options.  Let me tell you, the wrist units for all the available heart monitors are freaking HUGE!  I mean, they'd be big on an average-sized person, let alone on my dinky wrist.  There was one in particular that looked like a tablet computer.  In the end I got the simplest and least eye-catching one, in case I ever feel the need to wear it out in public.

Even the "simple" monitor comes with a mind-boggling array of features and a thick instruction book. I haven't cracked open the package yet.  Maybe tomorrow.  I need to get psyched for this.  At least I don't have to worry about learning how to upload my workout stats to the online fitness tracking spreadsheet.  My "calories burned" rating will probably be in the single digits.  It appears that there is no way of activating the heart monitor function without creating a whole "exercise file" with all the associated stats and crap that I don't need.  I guess it could prove to be interesting.  If it is, you can bet I'll let you know.

Tuesday, September 13, 2011

Solving Medical Mysteries

I crashed out again physically over the weekend, but right now I'm feeling elated.  I have been spending my time off researching Myalgic Encephalomyelitis, and all the crazy, mis-matched jigsaw puzzle pieces of my health that I've been struggling with for the past 8 years are finally falling into place.  I cannot begin to tell you how satisfying that feels.

For example, you may recall that one year ago my doctor prescribed Imovane (a.k.a. Zopiclone) to see if it would provide me with a more refreshing sleep, which would lessen my fatigue.  I took one half of the lowest possible dose, and had a truly horrible reaction.  Guess what?  ME patients are expected to react badly to benzodiazepines, the family of drugs to which this medication belongs.

And say, do you remember that time I ended up in the emergency room last November, with a scary-fast heart rate?  I figured that one out too.  According to the sources I've read, around 90% of ME patients have a condition known as Orthostatic Intolerance.  I found this wicked cool online document which explains it very clearly.  In a nutshell, it means that one's heart rate goes up and blood pressure goes down upon assuming an upright position, which includes standing up and even sitting up.

When a normal person assumes an upright position, the body releases small amounts of norepinephrine and epinephrine (a.k.a. adrenaline), which cause blood vessels to constrict, forcing blood to circulate all the way up to the brain. When an ME person assumes an upright position, the same process is initiated, but the blood vessels do not respond properly.  Therefore, the body produces more hormones in an attempt to compensate.  Norepinephrine and adrenaline/epinephrine are part of the body's fight or flight reaction.  Although the blood vessels may not constrict, the ME person's heart reacts normally, resulting in a rapid heart rate and feeling of excitement or anxiety.  There may also be lightheadedness or faintness if insufficient blood is circulating to the brain.

There are several aggravating factors for Orthostatic Intolerance, including low blood volume due to dehydration and/or insufficient salt intake.  Sufferers are advised to drink plenty of fluids, and to supplement with drinks containing sodium, such as sports drinks or tomato juice, as required.

My story started with a stomach flu.  For around a week after the first nasty 24 hours, I ate a very simple diet in order to go easy on my digestive tract.  I ate unseasoned veggies, plain brown rice, and baby food.  There was almost no salt in my diet.  I had never heard of OI.  I didn't know that I was setting myself up for a fall.  My symptoms can be summed up as a severe OI reaction.  It gives a whole new dimension to the jingle "I should have had a V-8!"

The mechanisms of OI explain why I often feel speedy and jittery just before a crash.  The OI symptoms are probably always there to some extent, but not so that I'd notice them on good days.  When I'm starting to get over-extended, the norepinephrine and adrenaline factors increase, but because I have never felt dizzy or faint I haven't taken that as a signal to slow down.  I have always ridden the adrenaline wave to the bitter end, in an anxiety-fueled whirlwind, trying to relocate my feelings of calm and well-being by getting to the end of my to-do list.  Starting from now I'll know that those jitters are an early warning signal from my body, and I have to do the non-intuitive thing in the middle of my fight-flight reaction: stop and rest.

I'm planning to experiment with wearing a heart rate monitor, as a quantitative measuring device for my body's stress levels. I'm often too busy to pay attention to small, subtle cues.  Perhaps if I actually have an alarm beeping on my wrist that might make me take notice.

Anyway, I'm feeling better today than I did a couple of days ago.  It's obvious now that a lot of my emotions, including my anxiety about my health and my future, are triggered when my body is overtired.  When I rest, I feel calm and centred.  When I'm too active, I get all hyper and freaked out.  It's the adrenaline talking.  I don't feel horrible today, but I'm still pretty speedy after even slight activity.  I think I'll give myself another day to rest.

Sunday, September 11, 2011

My Secret Life

It's Sunday and I'm starting to come out of an ME setback that's had its hooks in me since Thursday evening.  More accurately it's been in the works since last weekend, but I was able to work on Tuesday, Wednesday and Thursday, although at one point on Thursday afternoon I had to lock my office door and sit on the floor with my head between my knees for a while.  Then I unlocked my door and carried on with my afternoon like everything was normal.  On my way home, I noticed when I was paying the dry cleaner that my hands were shaking.  I went out for dinner with my husband and parents and let on to my mother that I was feeling "a little shaky" so that it wouldn't come as a complete shock to them if I lost my composure.  My mother advised me to "shrug it off".  I didn't tell her that coming in waves throughout the evening there were times when I felt like I might collapse.

A lot of my life is spent in this manner: minimizing symptoms, hiding how I feel, pushing through.  Pretending to be fine.

In some ways, this is a choice.  Sometimes I do it because I don't want to have to deal with peoples' reactions.  If I told my mother how I was really feeling she would panic and fuss.  I could not rely on her to be comforting and reassuring.  Usually what ends up happening in any upsetting situation is that I end up comforting my mother.

Sometimes I do it because I want to forget about feeling ill and pretend that everything is fine.  For example, I have a set of friends, a married couple.  I'm pretty sure the wife-friend sometimes reads this blog.  (Hello wife-friend! *waves*)  So she probably knows that I'm dealing with a debilitating chronic illness.  But we don't talk about it.  I'm sure that I could bring it up, and they'd be sympathetic listeners.  But they're super-fun to be with, and I don't want to waste my time with them talking about my troubles.  I want to put all that aside and just enjoy my time with my friends.

Sometimes I do it because I want to be a cheerful and reassuring person, and don't want to burden others with my worries when they have worries of their own.

At work I stay quiet out of fear for my job.

But the truth is, this illness is gradually taking up more and more of my time and energy.  I'm doing less and less outside of work, and I still can't seem to avoid triggering setbacks.  Any little overexertion cuts the legs out from under me for days or even weeks.  My last sin was venturing out during a heat alert.  Ken wanted me to go down to the lake with him to tour a Canadian Navy battleship that was docked at the harbour, and it sounded like fun.  I thought: we'll be by the lake, so it'll be cooler there, and it's supposed to be overcast, so no direct sunlight.  I calculated how long we'd be walking outside.  It seemed doable.  And it would have been.  Except the boat wasn't in the harbour where we expected to find it.  Ken was like, oh, gee, it must be in that other harbour, down the shore a ways.  So we decided to walk further, 2 or 3 times as far as the original walk, which would have been fine if it weren't for the heat alert.  We were halfway there when suddenly I couldn't go on, and we had to take a very expensive cab ride back home.

What used to happen when I had heat exhaustion was I'd go home, rest, and be fine the next day.  Now when I overexert myself my body winds itself up into a tizzy.  For a couple of days I feel unwell on that end of the spectrum.  Then I start to unwind.  For a few days I pass through a part of the spectrum that appears to be normal, so I think I'm over it.  But then I keep going down, into a crash.  That lasts another few days, at least the worst of it.  And then it takes more time to even out again.

So, usually what happens is that I start out feeling pretty good.  I assess something simple, like taking a walk by the lake, and figure I can handle it.  Then I'm having such a good time being out and about and pretending that I'm a normal, healthy person, that I get over-confident.  I agree to walk a little further than I should have, or I stay out an hour past my bedtime, or whatever little thing that would barely ruffle a hair on the head of your average human.  Then BANG! I'm reacting.  It takes me the rest of the weekend to get back into a condition where I can comfortably leave the house and function.  Then I go to work, and even my short week feels too long, and by my work-from-home Friday I'm crashing again.  So I spend another whole weekend cursing my fate and barely leaving the house, gathering my strength for work on Monday.  It takes another week or so to feel like "myself" again.  And then when I'm finally feeling good and optimistic again, the next trigger will kick in and start the cycle over from the top.

These cycles have taken over my life.  I no longer have any hobbies outside of reading, blogging, and going for sedate walks.  My social life is minimal, and I regularly have to cancel or turn down engagements because I'm trying to save up my energy for work.  People at work ask me how my weekend was and I sometimes don't know what to say to them.  "Fine" works some of the time, but I don't want to appear stand-offish.  I like to be able to share a little something of what I've been up to so that we can have a human social bond.  But I sure can't tell everyone that I spent the weekend with my feet up, feeling like crap, recovering from another relapse of my chronic illness.  It's a lonely dilemma.

Frankly, sometimes I'm terrified about my future.  Although it's hard to say for sure, I feel  that I'm slowly deteriorating, getting more sensitive to all the little stresses that challenge my homeostasis.  I've been reading more about Myalgic Encephalomyelitis, and that reading is both confirming that I fit the profile of the disease and scaring me half to death with seeing how bad things can get.  This condition is an amplifier, making every stress multiple times more stressful.  I just learned this week that it does that by screwing with one's neurotransmitters.  Neurotransmitters are the communicators whose job it is to keep the body in balance, so when they're screwed up, anything can go wrong.  That explains why the symptoms are so wide-ranging and unpredictable.

I feel very vulnerable.  Some days I feel like I'm barely hanging on to passing for "normal". It wouldn't take much of a push to destroy that delicate balance.  A car accident, another illness, a major life stress...  And then what?

I guess I'll have to burn that bridge if and when I get to it, to use my favourite mixed metaphor.  I do have a support system.  I'm not alone.  People would help me.  I wouldn't die homeless and starving in the streets.  But still.  My identity and my freedom do not feel secure.  I am feeling insecure.  Pretending that everything is fine makes me feel more alone and unsure of my support systems.  Next week I'll probably feel better, and even taking a few steps away from that cliff edge will allow me to relax for a while.  But the next setback is always just around the corner, and I just pray with all my heart that that's not going to be the one that pushes me over the edge.