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.

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.

Birthday

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.

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.

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.

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.

Mysterious Codes

No news is good news in Sparkland.  All is well.  My energy levels are decent and my back is in good shape.  Ken is hanging in there, waiting for his cardiologist appointment.  He has learned to live within the limits set by his atrial fibrillation until it can be treated. 

Work is pretty good, all things considered.  I am only trying to deal with one semi-crisis at the moment.  This situation was brought to us courtesy of the government.  It is a taxpayer-funded crisis.

It's common knowledge that Canada has a public health care system.  How it works in Ontario, my province, is that doctors submit their billings to the government via a series of codes.  X units of H345, Y units of J567.  The Ministry of Health's computers validate the billings.  If the code combinations abide by all the programmed rules, the MOH deposits the appropriate amount of cash into the doctor's bank account.  If the billings do not abide by the rules, we get back error codes and empty pockets.

Our lovely government published a new set of billing rules.  I found out about the changes at the end of the day on August 30th, for changes to be effective as of September 1st.  It's my understanding that the change bulletins went out to all the technical billing agents on August 30th in the morning.  This is what I like to call INSUFFICIENT NOTICE. 

The old rules were complicated, but we understood them.  The maximums, the dependencies, the limits on procedures per patient per 12-month-period, etc.  The new rules are just as complicated, and now we are confused.  The Schedule of Benefits is written in a dialect of legalese which is difficult to understand.  Considering that the income of our business depends upon a clear understanding of these rules, this situation is causing no small amount of panic among the ranks.

It will be sorted out eventually, even if it means that initially we get back a lot of error codes.  My biggest frustration is my own lack of knowledge.  I am responsible for supervising data entry for billing, and I knew the old rules backwards and forwards, but I sure couldn't tell you which procedure X478 stands for and why it may or may not be mutually exclusive with X479.  In other words, my understanding does not go deep enough for me to interpret the Schedule of Benefits myself.  Every doctor I've spoken to has their own personal interpretation of the changes.  That's why we're down to trial and error for figuring out what we can and can't bill.

Usually the system works very well.  I only wish that they'd given us a little more lead time to figure out these new rules before going live with them.  One month would have been nice.  We have a pretty good government, especially compared to what's going on elsewhere in the world and all, but still.  Sometimes it is time to complain.

The New House

My mom moved into her new house on September 1st.  My step-dad is still, for a little while longer, living in the rented apartment he moved into when they separated.  Even though they've been back together for a year, he didn't give up the apartment.  First it was too soon to talk about moving back in together.  Then he had hip surgery and it made more sense for him to stay in a home without stairs.  Then they started the whole house-selling process, and realized that it would be very convenient to have an extra place to store things (including the cats) during the staging and moving process.  The three of them (step-dad and my cat-brothers) will be joining her soon.

The new house is beautiful.  It has higher ceilings and bigger rooms than the old house.  It has brand-new wooden floors that don't creak.  It has bigger windows, and a skylight, so every room is full of natural light except the (fully finished) basement.  It has a proper garage, which they didn't have before (only a parking pad and a street permit for the second car).  It has central vac.  It has a beautiful view from both the front and back, and a park across the street.  It's only 13 years old.  It has a good vibe, that house.

On Friday around noon I called my mom to see how everything was going in the new place.  I called her cell phone, but she told me that her land line was already in and working fine.  She had a team of workers from the Red Coats moving service in there unpacking all her stuff.  The piano movers were on their way with the old upright.  Everything seemed to be going well.  She asked Ken and I to come on over and see for ourselves.

So, we did.  It's only a 20-minute drive from our house to the new place.  We did a walk-through and were impressed by just about everything we saw.  My mom is already itching to repaint, change the window dressings, and re-do the kitchen.  She especially dislikes the digitally-controlled oven.  We had to read the instructions at length just to figure out how to program it to bake at 375 degrees.  Personally I prefer the old, simple way: stick a dial on the front of the oven, marked from "OFF" to "500F" and leave it at that.   One should not have to puzzle for 15 minutes before figuring out that you have to press '2' to make the temperature go up and '7' to make it go down.

But seriously, that place has great bones.  It's definitely a big step up from the modest, post-war house I grew up in.  I'm happy for my parents and expect that they will settle in quickly and live happily ever after, or as close as humans can get to that, for a while.