I Fell

I suppose it's one of those inevitable things that you are waiting for and just wanting to get it out of the way.   I must admit, I assumed my first fall would be on an icy/snowy walkway, and that I'd crack my head on concrete. I know I have the tendency to do things I might not be ready for, or to overdo things, but it didn't happen that way either. It still hurts when it happens ... and with witnesses, is mildly embarassing. While it felt like a real smack, judging by the lack of people rushing to my aid, the general population must have felt that I was just fine.  Which I was, generally.

What irritated me most is that I shouldn't have fallen in the first place ... I just forgot. In that brief moment I forgot that I can't reach, turn and stay vertical all at the same time any more.  Vertical multi-tasking is out.

What irritated me second most is that I KNOW how to fall and in that moment I fell wrong.  I'm lucky I didn't break my wrists (they hurt like the dickens this morning but there isn't anything pysically wrong with them).  I know how my arms are supposed to catch my fall, but I did it totally wrong.

What irritated me third most is that I didn't do anything else to break my fall properly and I landed hard on my butt. Judging by the pain in my back muscles this morning, I gave myself quite the jolt, and judging by the sore butt, I'm going to end up with quite the bruise in a couple of days.  That'll be sexy.

All that being said, I'm happy with my fall and I know I'll get no sympathy for it.  But maybe it will provide hope to people out there in my situation who are earlier in the process of recovery.  When you have balance issues there are things you think you may never do again.

I fell because I briefly forgot that I can't jump, turn and reach all at the same time.

But I was throwing a football with my son, on the beach.

Shot Up and Shoved in a Tube

MRI is such a fancy acronymn ... really it should be called a STPROS .. A "St. Pros".   Screaming Toilet Paper Roll on Steriods. 

Friday was my six month follow up MRI.  Well ... it was supposed to be at six months, but maybe I kinda ignored the letter in the mail from the hospital thinking it was a donation request and missed my original appointment.  Yup, hospital was super-pleased with me about that. They got their revenge by rescheduling me for 8:30am on a Friday morning ... not so bad, except that I live an hour away from this particular hospital.

I arrive, duly contrite, with all required documentation filled out properly and am actually ushered in ON TIME !  Wow .. didn't know that happened. 

Now, I've had these before.  Several.  But this was different. 

Technician "we're doing your back?"
Me "yup"
Technician "wearing any jewellery?"
Me "nope"
Technician "wearning anything metal?"
Me "nope" (no bra, decked in full sweats and no shower - I was a prize)
Technician "Okay then, let's go"

No gown? clothes on? shoes on?  AWESOME! It was like going through airport security somewhere other than the US.  Shoes stayed on, laptop in the bag, liquids are allowed.

The MRI itself was easy-breezy.  I have zero claustrophobia issues and was comfortable ... if anything mostly bored.  A few "pictures", then the gadolinium experience.  I get the nausea.  Not a common side effect but you'll find it buried in the fine print if you research gadolinium side effects.  Inject chemical, wait for it ... wait for it ... wait for it ... there it is !!!  Wave of nausea rolls through me and just as I think I'm going to hurl my cookies on the technician, it passes, and back I go into the Screaming Toilet Paper Roll on Steroids.

Round two .. slightly different and I'm sure, had the technician peeked through the window, he would have thought I was loony.  The MRI starts up, screams into my ear and I start laughing.

The sound is the exact music to Dragonette's Hello ... and I can't stop singing it in my head as the MRI goes on.

Granny Panties and Hugging Nurses

I saw my neurosurgeon last week.  He was pleased with my progress ... very pleased.  Score 1 for me :)

I was expecting the visit to be just a conversation ... how are you doing, how's it going, how's physio, are you working yet, and maybe a quick walk around his office.  Well, ... no.  He wanted to do a series of tests to see where my strength/abilities are.  That, in itself is fine, but it involved the absence of jeans and socks and the wearing of a paper gown. 

I'm used to that (and more) with my family doctor, but this is my neurosurgeon ... a fatherly kind of gentleman, who is not hip/sick/hot in the least!  Intellectually I understand that he saw most things that there were to see during surgery, but I was out cold for that. So when he left the room saying "take off your jeans and socks" I did the mental inventory of "what am I wearing today".  While paper gowns are not glamourous, it was fine, and apparently I'm doing very well considering the extent of the surgery I had.  All I can say, though ... is thank goodness I chose to wear granny panties and not some lacy scrap of a thing that day !!

I went from my neurosurgeon, across the street to the hospital to visit with my physiotherapists and any nurses that might remember me from rehab.  As I walked into the hospital and through to the rehab unit, I realized that I had never actually walked those halls ... my coffee runs to the coffee shop had always been in a wheelchair, and I left in a wheelchair.  It was an interesting mix of surreal and nostalgic.

My rehab physio guy no longer works there because he got into medical school.  I was sorry to miss him and pleased for his success.  But the killer guy ... the guy who made me stand on a leg I didn't know I had (see Use the Force Luke), was there and remembered me.  It was nice to be able to say "look where I am now and I couldn't have done this without you".

And ... wait for it ... I hugged a nurse :)  The guy who plopped himself in my room and told me his life story (the "why not to date a supermodel" guy). 

Going back made me realize how far I've come since May 31st, and how much the people there started me on my road to recovery.  They change lives and I'm grateful.

Fifty Shades Faster: Day 4 vs Day 135

The technology of the modern era has given us video ... while sometimes a bad thing (think misbehaviour caught by a friend's cell phone) it can also be a good thing.

I thought I would take a moment and post two videos.  The first one taken on day 4 after my surgery, and it is my first attempt at "walking" with full weight bearing.  Without video, I would never have seen myself, and to be honest, how it felt was not how it looked.

The second video was taken this morning - day 135 after my surgery.  There has been no nerve healing in my right leg, so any progress is due solely to my own stubborn drive and the skill of my physiotherapist(s).  I will be forever grateful for the men (and interestingly, they've all been men) who decided that physiotherapy was the career for them.  They change lives.

It felt like I was running a million miles an hour, but really it was only a 10:45 minute mile (6:40 min km), and only for 1/4 mile (400 meter) intervals.  And Fifty Shades was supporting some of my body weight.  I'm not ready for the world to see the video of me trying to run without support :)

But if there's anyone out there who is thinking of giving up, wondering if the work is worth it, wanting to just hop under the covers and stay there ... it's worth it.  Many, if not most, of the moments suck, no one can see pain, and it feels like there's no progress.  But there is.  134 days ago I would have told you that walking is Herculean enough, no need to dream about running again.  Today ... I'm not so sure.

 

Fifty Shades of Physio

Who knew I'd get to be all harnessed up for a physio appointment ... there's some fun to be had with that !

Physio guy has decided it's time to run.

I'm all over the idea of running.  Heck, I can barely walk, but I'm game to try to run!  Running has a totally different leg stride than walking, so it is actually a very different physio exercise.  But how do you teach someone to run who can't even hop with one leg?

The answer ... Fify Shades of Physio

This funky and cool treadmill (that's not me on it) allows the harness to hold  your weight while the patient tries to learn the stride.  No worries about falling, weight bearing, ankle or knee twisting, or any other bad thing. I will admit to a little social awkwardness as I was putting on the harness, with help.  I did manage to avoid making any wise-ass comments about "are you sure we know each other well enough for this", and was waiting for him to ask "do you trust me".   I mean, I like him as a physio guy, but he's really not my type (not to mention he's probably 20 years younger than me, and I am so not his type!).

It was, so far, my weirdest physio experience.  My legs had no idea what to do, my brain got frustrated because IT knew what to do but my legs weren't cooperating, and the proprioception issues extend up to my waist, so maintaining a forward facing position was almost impossible.

I'd say, not bad for a first time effort.

Update:  Today was attempt number 2 and I did it!  It was awesome!  I could only handle 3 minutes at a time, with significant rest in between, and I only got up to a 13:30 minute mile pace (which is very slow), but it was the most liberating feeling and I think everyone in the place could tell I was over-the-moon excited.

Honey, You Deserved that Body Check

It might not have been a full-on NHL body check, but it was pretty good for a crippled chick.

Starting back to work means getting to and from work, which for me, is a commuter train. 

The morning commute is easy ... I am at the top of the line, so the train is there when I get to the station. I just hop on (HA! "hop" .. right), grab a seat and wait for the train to leave.  Arrival downtown is a bit of a madhouse but it's generally okay because the masses of humanity are all moving in the same direction and everyone knows where they're going.  No one doing anything stupid.  It's early in the morning, people are focussed on getting to work or getting their first cup of coffee, and no one is in a maniac-craze to get anywhere in the next 20 seconds.

Home is a different story.  Home involves tourists or other such sundry out on the streets - gazing around at the scenery, confused about where they're going, making sudden stops and interrupting the pedestrian flow.  But the fun of all fun is the train station.

The regulars on my train are orderly folk.  They know where the train is going to arrive, where the doors are going to be, and even though the train hasn't arrived yet, they line up in a nice fashionable paired queue ... one side of the line heading for the upstairs of the car, the other side of the line heading for the downstairs of the car.  They are also courteous enough to allow a gap between the start of the lineups and the edge of the platform so that people can walk to the line up for the car they want.

It starts to get interesting when you are walking the platform when the train pulls in ... you are walking in a meter-wide "aisle" between a mass of humanity and a moving train.  For me, the walk involves the people on my left (aka my "good side" with the cane) and the moving train on my right (aka, my "bad side").   Now generally, people are very good ... they see me coming, they give me space, they wait for me to pass, they walk widely around me.

Not so much yesterday.  Yesterday, a woman (I'll call her that out of politeness) decided to be a social idiot.  She was waiting in line, I was walking with the train moving to my right, and just as I was about to pass her, she looked up, looked at me and stepped out in front of me. Not fully in front totally blocking my path, but enough in front that an able bodied person would have had to sharply veer to avoid hitting her.

I am not able bodied.  And I'll play the cripple card all day long.  I have no regrets about leaning, hard, into her as I passed her. She's lucky I didn't take a swing at her with my cane (hmm ... cause that probably would have been assault).

I didn't look back.  And I might have smiled :)

Chicks, Nails and Drooley Guy

I guess I've been a bit of a hermit for the past four months, living a fairly isolated life based from my livingroom couch.  I've had the advantage of being able to control my social environment and, for the most part, who is around me.

So I was in for a shock in the last couple of days as I commuted to work with the great unwashed.  I have forgotten what it is like to be in an environment where the confines of social norms are, indeed, for the greater good.  People are very kind to me ... they hold doors, they offer to help, they dodge out of my way once they see me.  But so many people are living on some planet where an awareness of other people, and what should and should not be done in public, are totally foreign to them.

There was music chick - her iPod was so loud that we could hear the words to the song from across the train.  And her taste in music was pretty lousy.

There was distingished gentleman - who agreed with me that if we could hear her music, it was too loud.  An affable and reasonably attractive, very well dressed, mid-40s guy.  But when he got distracted by his blackberry he started to chew his nails.  Ugh (but at least it was his fingernails)

There was space-invading sleeper man - the old guy who was leaning over into my space, couldn't get through a page of his magazine without falling asleep and his snoring kept waking himself up.  I didn't notice the drool until he got up to leave.

There was the guy who went bolting off the train to run to his car ... parked in a handicapped spot.

I had forgotten this part of the human experience, and I can't say I missed it.

Work 1, Me 1. I'm Calling it a Draw.

It's 5:30pm, I'm in my jammies on the couch with my feet up, debating whether I want to bother eating anything for dinner or whether my exhaustion will win and I'll end up asleep before 7pm.  I am a fan of eating, so if I'm choosing sleep over food (and let's face it - no way I'm making anything for dinner ... it would be ordered in), then I'm tired.

I may have started my day a wee bit early ... at 5:15am I woke to the realization that I had done nothing to prepare for the day - no lunch made, no clothes organized, no idea where my office keys are.  That's one way to launch yourself out of bed!  With an interesting mix of excitement and nervousness and uncertainty I caught the early train downtown and went to the gym.  Yeah .. I know.  First day back at work and I go to the gym first.

Score 1 for Me.

My coworkers seemed excited to see me, and judging from some of my conversations today, glad to hand my job back to me.  Not sure I want to take all of it back ....  :)  

The day would have been easier had my symptoms not decided to drive me insane.  Sitting became more and more uncomfortable (I missed my couch), and the numbness in my right leg was insane! But I have days like that at home too, so really, no net difference.  Might as well be at work where I am able to use my brain.  And my brain was great ... until mid afternoon when my body caught up to me.

The cool kids at the office invited me along for their Tuesday afternoon cupcake run.  Yahoo!!  I'm all in for cupcakes ... especially when butter cream cheese icing is involved.  But the ladies at the cupcake place .. really ... can you serve people ANY SLOWER?  I don't stand well for extended periods of time, so I crapped out and sat while my cohorts in crime waited in line and bought me a welcome back cupcake.  Which was promptly devoured - it never stood a chance (and is probably why I'm not that interested in dinner right now).

But my afternoon was downhill after that.  By 3:30 I was counting down the minutes and trying desperately hard to ignore the numb-induced-pain sensations in my feet and legs.  Sheer determination got me out the door, down the street (lookout ... cane lady coming through!! Get in my way at your own peril!), and onto the train. 

Score 1 for Work

I get to do this all over again tomorrow, but for now I'm very, very grateful for the people in charge who wouldn't support a full work week. 

Sheesh, imagine the professionals knowing what they're doing.  Again.

"Getting a Life" Isn't a Slam Dunk

You know it's time to get a life when:

• you purposely omit half your grocery list so you have an excuse to go to the grocery store again later in the week
• your parents stopping by to visit is A BIG EVENT
• you anxiously await the mailman and are disappointed when there's no mail
• you start replying to spam email
• you consider scambaiting a valid hobby
• you start doing half loads of laundry for something to do
• you comment on every status update your friends make on Facebook
• you actually go to "after the show" on www.drphil.com
• you're watching every episode of Criminal Minds, Big Bang Theory and any true crime show you can find even though it's rerun season

I found myself saying "yes" to many of those points, so, I started the monumental task of getting everyone on board with allowing me to go back to work.  I knew from past conversations with my employer that I am not currently the master of my working destiny.  Well ... that sucks.  The realist in me knew that as much as I enjoy my full-time salary,  the big bang approach wasn't going to work. Even I could admit that I'm probably not up to full time, five days per week, in the office. (Mind you, saying that I'm "probably" not up to it, hardly sounds like admitting it.)

But wanting to go back, doesn't mean I get to go back. It's amazing the number of people who get to meddle in your life when you're off on disability. I have three doctors, a physiotherapist, two disability insurers, my boss, human resources ... and then there are my friends and family who think they have an opinion  :)  Getting all but friends and family to agree (because really, they have no say) is quite the task, but as of this morning, the relevant parties have reached an "acceptable to all" solution.

YAY !!  My canes and I are going back to work next week!!

 For next week and September I'll start with two days per week in the office and see how it goes.  I'm confident that I can make it happen, and I'm sure I'll be tired at first, but you can't do until you do.  ("I can't do until I do" is my new favourite saying, closely followed by "I don't know what I don't know".) I'll never get  back to work unless I get back to work, and trust me, I'm doing everyone around me a favour.  People have been good at hiding their eye-rolls and most listen patiently to my latest update on how I'm doing, but even I think I'm boring now.

I officially declare it time to get a life.

Recovery - Approaching 16 Weeks

I'm tired of the symptoms.  They can go away now, thank you.

If I could wish one symptom away, it would be the numb feet. Getting out of bed in the morning takes some psyching because I know that the first stand of the day is going to hurt.  Ugh.  I hate mornings to begin with, let alone adding my first daily dose of pain to it. I can't get the coffee into me fast enough :)   Numb feet means I can't wear slippers, or flip flops or Jesus shoes - even my good foot that has full muscle control, can't keep them on. The numbness prevents my brain from accurately feeling the shoe on my foot and in all honesty, I can't always tell whether the shoe is on or off.

Interestingly, the symptoms from the nerve damage from the nerves my surgeon had to cut are much more tolerable.  Maybe because they aren't painful? Maybe because they limit me in different ways? Maybe because I can train my body to compensate? 

 The other day, someone told me I was so optimistic and cheerful.  In reality I am one breath away from depression every day.  If I let my brain wander down the path of focussing on the negative, I would crawl into bed and sleep for six months.  It isn't easy - I miss my swagger. I miss my stilettos. I miss the ease with which I used to do things.  That being said, there are things I can do now that I couldn't do a month ago.

• I got on an escalator.  Yipes! Sounds simple but you'd be amazed at how much coordination and balance is required to get on an escalator - especially going down.
• I stand with ease - motivated by wanting to say "HA - you idiot" to the occupational therapist who wanted to install armrests around my toilet.
• I use the stand-up shower. No more sitting in the bathtub.  (As an aside ... can you believe what they charge for those gazillion blade razors with built in shaving gel? .. I learned quickly that the balance required to stand in the shower, balance on one leg, apply shaving cream, keep that leg away from the water, and shave, all at the same time, is way beyond my abilities. But those all-in-one thingies are great.  More TMI).
• I don't use canes in the house - ever
• I can go up and down my stairs. I still wouldn't do that while carrying hot coffee, but I can carry small things

In terms of nerve healing - it's hard to tell.  I'm getting temperature sensation back in my left leg. It is nowhere near 100%, but my body is trying.  I would make the monumental assumption that if that nerve is healing, so is my proprioception nerve, but it is impossible for me to tell.  I'm able to pass the up/down test when my toes are pulled up, but I can't feel the difference between neutral and down.

Ever so slowly, I'm getting my life back. It may never return to what it was and I would sell my soul to be able to run, but I have an acceptable level of independence and a great excuse to make my kids unload the groceries from the car :)

The Crazy Lady Wants to go Back to Work

I'm really not very good with letting other people decide what's best for me.  It just goes against everything I believe about controlling your destiny and owning your life. 

But it seems I'm facing an uphill battle with my decision that it's time to get back to work.

When I tell people I want to return to work in two weeks, I get the same reaction ... a slight pause (while their brain works 10 million miles an hour trying to figure out how to politely say what they want to say), a "hmmmm", another pause, and then "are you sure that's a good idea?".

When I first broached the idea to my point of contact at work, she didn't quite laugh out loud ... but I'm thinking it took all the restraint she had to stifle it.  I got the pause ... the "hmmm". ... and then "well, that's really a decision your doctor needs to make".   Sigh ... that should have been my first clue.

Then I ran the idea by my family.  My S.O. was direct ... he's the only person who can get away with telling me that maybe I don't always know what's best for me :)  Other family members were more polite but the message "it might be a little soon for full time working" was loud and clear.

And then the sisterhood bailed on me.  You know, those loyal girlfriends who support you no matter what.  The ones who take your side with enthusiasm when you love something today, even though they took your side with enthusiasm yesterday when you hated it.  And they don't call you out on your opinion sine wave.  Even the sisterhood gave me the hairy eyeball .... the "hmmmm" ... the "are you sure you're ready for that".

Okay, so why is everyone wrong except me ? !!  I will confess, that is the thought that went through my head. But then my next thought was that "eveyone else is wrong, not me" reminded me of a boss I had once. She was a crazy lady who believed that all her employees were useless but that she was fabulous.

I have to face the possibility that I am the common denominator, that all my friends and family aren't wrong, that maybe my doctors have an objective opinion and that a gradual return to work is the best way to go.

I did a smart thing, took the advice of the professionals, and did a dress rehearsal of going into the office this morning.  I will grudgingly admit that while not "hard", the experience was more tiring than I expected and I was happy to get back to my flannels and the couch this afternoon.

I guess I've surrounded myself with good people.  But it sucks to be wrong :)

Stilettos and Spinning

I have officially passed the three months since surgery and my "before surgery" life feels like a lifetime ago.

I'm sleeping well for the first time in a couple of years, but sometimes in my dreams I am walking normally and easily.  I wake up to the reality that my feet are still numb, I don't know where my right leg is and I definately don't walk normally and easily.

I am in the dark days - those days between medical healing and mental adaptation.  Energy has returned so I'm feeling cooped up, bored, and resentful of my inability to walk for any kind of distance.  The Olympics are only a minor distraction, and if anything, reinforces to me what proprioception does for the human body.  My mind is starting to atrophe from the lack of mental stimulation so I am making a hard push to get back to work sooner rather than later.

But somehow through these times, I still surprise myself with my acceptance of the need to push hard.  I drive to physio and try to talk myself into wanting to be there ... trying to reprogram the voice in my head that is saying "ugh .. I really don't want to be doing this today". I strive for something more positive, at least "okay, let's just get this over with".  Inevitably physio guy expects me to do things I don't think are possible, and while not always 100% successful, I manage to avoid making an idiot of myself. (Like Friday ... "I want you to go up these stairs, two at a time, no hands ... then down".  RIGHT.  You're out of your mind.)  After I was mostly successful at that, he admitted that he can't plan my program ahead of time.  I am often successful at things he doesn't expect me to be able to do and he has to make things up on the fly.  I took that as a compliment :)

And even in these days of mental defeat, I still manage to set outrageous goals for myself. 

Yesterday I took out my favourite pair of shoes ... 4" strappy silver stilettos ... and tried them on.  The smartest thing I did was to stay seated - clearly my proprioceptive skills are not ready to handle balancing on my toes and half a centimetre stiletto tip.  I would have snapped my ankle.

Today I tried a spin class.  I can't ride a bike - with no balance and my right foot likely to slip off the pedals, riding out in the real world would be asking for trouble.  But a spin bike is hard to tip over and I can clip in my feet.

I lasted 25 minutes and it was HARD.  I was only able to do the first two standing intervals, and my heart rate was through the roof almost immediately (I don't know what it actually was - I wasn't wearing my glasses so I couldn't figure out which was the start button on my heart rate monitor!  That tells you how long it's been since I've worn it.)

The stilettos will have to continue to be contained to the bedroom, but spin classes ... look out! You are next on my list of things to be conquered.

Recovery at 12 Weeks

It's been a little over 12 weeks ... amazing how time goes so slowly yet still seems to fly by.

My physio guy continues to try to kill me twice a week, and I get myself into the gym another three days a week - mostly to do cardio-type stuff like walking on the treadmill and the elliptical.  When my back muscles went all spazzy I wasn't able to do any core exercises, so hopefully I'll be able to get back to that soon.

So what's the deal at 12 weeks.

Left leg still has the usual issues except I, for sure, have some temperature sensation in the sole of my left foot (but nowhere else).  It's a little more subtle than my right foot - my right foot has better sensitivity to the nuances of temperature, but the left foot seems to be coming along.  There is nothing higher up the leg ... today being a good example of that, having left the car parked in the sun in 31C + temperatures.  I sat down on the (black) seat in shorts and my right leg sure as heck registered HOT, HOT, HOT !!!   Left leg, quite comfortable thank you.

Right leg ... my walking balance went totally wacko for a couple of days last week ... all of a sudden I had issues.  Then I started to pay attention.  I spend most of my life now in bare feet, so I started paying attention to my feet as I was trying to walk.   When a quote-unquote normal person walks, their foot doesn't just strike heel-toe.  There is the heel strike, then a very subtle pronation/roll towards the outside sole of the foot, then the toe strike.  My left foot has always done this, but after I lost proprioception in my right leg, I lost that subtlety.  The best I was able to learn was a BAM-heel ... BAM-toe stike.  But late last week, that subtle pronation/roll returned - which was what was causing my balance issues.  I was so used to compensating for the incorrect foot strike that I had to adjust to the correction.  Now my right foot is doing the heel-pronate/roll-toe and my toes are engaged in the process.  VERY COOL !!   

But again very weird.  Why I would start to get things back in my feet when the nerves were cut in my spine, I have no idea.  Google isn't very helpful and the only person who might have an explanation would be someone well versed in neuroscience.  That would not be me.

So  ... I take what comes, and hope that over time there is healing in the rest of my legs.

I Guess I'm Getting Stronger

It was re-assessment day at physio,  The goal ...  to answer the question "has there been any progess in the last four/five weeks".

Apparently, I rock!

Well, I'm not perfect, but everything showed improvement.  The strenght testing showed that my right leg is getting closer to the strength of my left leg, balance tests were still challenging, but improved, and my endurance test rocked.

LOL ... ah, how the definition of success has changed for my life.  Take the endurance test.  When I did it four weeks ago, I was able to walk 274 ft (83 meters) in two minutes.   Today I was able to walk 454 ft (138 meters) in two minutes.  That's still a 14 1/2 kilometer (or a 23 minute mile).  I try not to think of it that way because my "old" walking speed was so much faster.  I have to think in terms of a new baseline ... that 10 weeks ago, I couldn't walk at all.

For all that progress, were you to walk behind me (and ignore the canes) you'd think "hmmm, there's something wrong with her right leg".  It's got it's own funky stride ... it works for me for basic mobility, but I strive to retrain it to a more normal flow. With focus and concentration I can do it.  As soon as I stop concentrating it goes back to it's wild-thing routine. 

Balance testing showed some improvement ... I can stand on one foot (my good leg) for 15 seconds, no problem.  Right leg ... well, it's actually pretty hilarious.  With my arms doing the wild windmill thing I can balance on my right foot for about four seconds before I have to grab something or fall over.  This time, though, I was able to stand heel-to-toe for 30 seconds with either foot forward!!  Yay!  When I did this four weeks ago, I couldn't stand with my left heel touching my right toe (left foot in front ... sort of like slalom skiing).

I don't see the progress because I see myself every day, but when tested against a benchmark ... I'm learning.  I don't know how much actual nerve healing has happened, but at least I'm learning to cope with what I've got.

As an aside .... today's workout was about endurance and physio guy had me get on the treadmill for the first time (at physio).  He asked me ... "so, when was the last time you were on a treadmill".  I had to confess .. "um ... yesterday".  Okay, so I'm the queen of too much too soon, but I can't go to a gym and not get on a treadmill and try to do better than the time before.

69 Days and I Think There's Something

Sunday afternoon when I was standing in bare feet on my friend's sun-heated patio, I thought I felt some heat in my left foot.  I brushed it off as fantasy as the pin prick test later in the evening didn't resolve anything (sharp pain and temperature are the same nerve, so if you have one, you have the other).

But today ... I went downstairs.  That in itself is an adventure because I don't have handrails on the stairs to the basement, but I was in dire need of clean clothes, so getting to the washer/dryer was essential.  My downstairs has a lot of tile ... cold ceramic tile. When I stepped onto it,  I swore I could feel some cold with my left foot ... maybe not as precisely as my right, but there was something.

So, the pop can test.  LOL ... I know, surely there is a more scientific way to test these things, but when a pop can is cold, it's pretty cold.  Grabbed one from the fridge.  Touched it to the sole of my right foot - yup, COLD ... sole of left foot .. OMG, it's cold!  Not as sharply cold as felt by the right foot, but definately cold.  I tested it all the way up and down and my left foot was registering the cold up to my ankle. Nothing up further yet.  I have no idea why my leg and foot would sense temperature from the bottom up, but hey ... I'll go with it !  If I need to regain sensation starting with my feet, I'll take it.

69 days ... and maybe, just maybe, I'm starting to see some nerve healing.  I'll try not to hold my breath, but I really want these nerves to heal so I can be one of the lucky ones and get to go back to the life I knew.

Keeping my fingers crossed.

Recovery at 10 Weeks - the Triathlon Sports

I think I have phantom healing ... those times when my brain thinks that maybe there is some improvement. 

Like yesterday - standing on a hot patio in bare feet.  My right foot could sure feel the heat - but is that heat I feel in the left foot?  Yes? No? Maybe? I think yes!   Or not.  Objective testing later in the evening showed that no, there was no real change.   (It's kinda cool being able to jab a pin in your leg and not feel it, but also kind of worrisome.)

Like in physio on Friday when my ankle turned doing squats on a bosu ball.  Did I catch myself because I knew my ankle was starting to go (I wasn't looking at it)? or did I catch myself because of a general falling sensation.  Judging by my foot getting caught under the kitchen chair this weekend, I'm thinking I still have no proprioception.

But I am definately starting to get my energy back, and that's very cool.  Energy means the ability to do more - both out in the world and in physio.  I know from experience that more energy means more effort means more improvement - that exponential spiral of positive change.  YAHOO !!  Finally.  It took almost 10 weeks to start to feel human again.   That made for good physio homework yesterday at the gym. As an aside, I gotta tell you ... hobbling into the gym on two canes gets you TONS of sympathy .. people move out of the way, give you lots of space, and offer to get you stuff.  It also gets you very weird looks and the odd "shouuld you be here" comment. (Yes, some woman actually asked me that.  She was older, and definately concerned, so I didn't whack her with my cane, but I was tempted ... instead I just smiled and told her I was there on doctor's orders). 

Back to homework in the gym ... I was very pleased with myself.  13 minutes on a recline bike where I only jammed my heel into the bike twice (see, not paying attention means my right leg does strange things, including my foot twisting inwards when it's not supposed to).  I also upped the treadmill challenge - this thing will NOT beat me.  Cranked the speed to a whopping 2.2, aimed for longer strides and did a full kilometer (0.6 miles) in 16 minutes. (well, 16:47, but I'm counting that as 16).  I'm not sure how I avoided falling off the treadmill, and I made a beeline for a chair when I was done, but I did it.  I also accepted a friend's invitation to try out a swim in her pool.  I recommend private pool swimming - stairs to get in and out and no slippery decks.

No changes in nerve healing that I can objectively determine, but I was able to do all the triathlon sports yesterday.  Not well, not with swagger and not with speed, but I'm a far cry from eight weeks ago when I couldn't walk.

Water Can Kill You - Approach with Caution

There was some discussion around whether or not she would rescue me from drowning, but ultimately the thought of having to explain a dead body to the police was the deciding factor.

My S.O. is away on business for a couple of weeks, so I gladly accepted an invitation to a cottage for a couple of days. We're in the middle of 30C+ heat and lovely July humidity, so being out of the city is something to look forward to. 

Physio guy spent lots of time working with me on walking on uneven terrain (read: walking on the grass) so I could cope with the brief walk from car to cottage and from cottage to dock.  Fortunately a huge, solid dock so the risk of falling into the lake is pretty slim.  Thanks to physio's help and preparation, I have been able to successfully navigate the grass and very small hill.

But it's hot, and I am a strong swimmer.  Nothing Olympic worthy or record breaking, but I can hold my own in the water.  Every physio person has told me that swimming would be an excellent addition to my rehab, but (so far) pool decks are much too slippery for me .... not so much with a lake.

After some discussion around how to get in and out, exactly (and the resulting teasing of whether or not to haul me out or let me drown), I decided to go for it.  My initial instinct was to just jump off the dock ... how hard can it be to get in the water?  It's getting out that needs the effort.  I made several attempts to get in the water: there was some standing on the ladder before I decided that that wasn't going to work and there was more deliberation about just jumping in. Finally I took a floaty, wore my sandals, took my canes, and wobbled in from the shore.

You would think by now that nothing would surprise me.  I was shocked.  My legs were not behaving, and not only were they not behaving, they were almost dead weight.  Jumping in off the end of the dock would have been disastrous. A very high risk of panic, and things don't go well when you panic.  By "walking" in, I was able to float around for a few minutes and make a few feeble attempts at kicking my feet, but the experience was not even close to what I was expecting.

Fortunately I didn't come close to drowning and Lucy didn't have any 'splainin to do.

Baseline

Yesterday I ventured onto the treadmill.  I have spent some time in physio on a modified elliptical ("some time" = maximum of 10 minutes), but since I own a treadmill, I decided to try it out.

I don't know whether it was a good idea or not.

My goal was one mile.  Got myself up onto the treadmill (thankful for handrails), turned it on and hit "quick start".  My treadmill defaults to a speed of 1.0 on quick start.  Yipes !   1.0 was faster than I thought it was going to be.  I was able to get going and have pretty good posture without falling off or falling over.

But then I did the math.  A speed of 1.0 equals one mile per hour.  ONE MILE IN AN HOUR.  If I wanted to go the full mile, I would be an hour on the treadmill, and I knew that wasn't possible.  Cranked the speed to 1.2 and revised my goal to 0.25 of a mile.

It took me 13:09 minutes to walk 0.25 miles.  One quarter of a mile.  That's one lap around a standard track.  That's 400 metres.

I used to run almost two miles in 13 minutes.  I used to walk a perfect 16 minute mile (I could walk an exact 16 minute mile, mile after mile after mile .. I know - I've done it).

As much as I aim for positive and remind myself that six weeks ago I couldn't even walk, or that without surgery, in another four months I'd be paralyzed, it doesn't really help.  I should look at the bright side, aim for that goal of one mile and use all of those old training techniques I have up my sleeve to get there.

But really, some days it's allowed to be just plain, ole, depressing. 

1/4 mile in 13:09.  And it was hard. I hate this.

Recovery at Eight Weeks

Recovery at eight weeks looks identical to recovery at six weeks- my deficiencies are all still the same, and my abilities are all still the same, just a little more refined. 

I had my eight week check-up with the neurosurgeon yesterday and he was neither impressed nor discouraged with the state of the nation ... he seemed pretty neutral about the whole thing.  Scars have healed well, muscular strength in my legs is pretty good, and my knee and ankle reflexes are behaving appropriately.  It was a lot of driving back and forth for a 15 minute appointment, but at least he was on time :)   His prognosis - continue doing what I'm doing, get as much physio as I can, keep at it for as long as I can, we'll do another MRI in a few months, and he'll see me again in three months.

My question for him ... when will I stop being exhausted all the time?  Surely I should have some energy by now.  Apparently I should have energy by now, but it can take up to three months for the body to recover from surgery as serious as mine.  Great.  I'd love to be able to go out for more than an hour.

I suppose a positive thing is that my brain is starting to consider the numbness and lack of sensation in my legs as "white noise".  I guess my instinctive, hard wired warning system is finally calming and my brain is recognizing that those symptoms don't mean I'm in danger.  Nothing to be warned about.  Just the usual numbness.  The benefit? I can finally sleep at night. No more waking up because my brain doesn't know where my leg is.  No more waking up because it's freaked out about the feeling of the sheets against my feet. No more tumour back pain.

For the first time in two years, I'm sleeping through the night.

Why is "GO SLOW" Not in My Nature?

How many times have I warned myself about too much too soon.

Right.  A million.

When you do things too quickly, you learn and reinforce bad habits. This simply results in doing something awesomely, badly.  I know this. I've lived this. I've warned myself about this.  But apparently leopards are leopards and all the intellectual arguing in the world doesn't stop me from doing what I always do.  Too much too soon.

In my frustration to get mobile I've been reinforcing some bad habits.  I knew it.  I warned myself about it.  "Sarah, that's not a good thing to be doing ... slow down and do it properly".  I continued to do it.  Today I pay for it.

I've managed, through compensating for bad posture, bad positioning, and bad habits, to strain/pull/stress/tear a muscle or two in my back.  If I twist, turn, stress, cough, sneeze or otherwise move the wrong way, Holy Flippin' OUCH!   Pain worse than any of the pain I went through post surgery.  The kind of pain that makes you stop breathing.  The kind of pain that makes those bads words come out of your mouth, even in front of your kids.

From what triggers it, I can tell what caused it. When you stand up - always push (never pull) and use your legs! When you walk, weight bear equally and use your canes (never hobble with no canes). When you reach, use your legs (don't over-extend). Turn your body (don't twist your back).

Apparently those physio guys know their stuff better than I do. 

Go figure.

Musings from the Gym - Post Surgery

Ha!  Look at me all adventurous. I made my daughter drive me to the gym.

Right.  First task - 24 steps down to even get in the place.  Note to self - save energy to come back up these darned things after the "workout".

I went to the gym more for my mental health than anything else.  It brings a sense of normalcy, something I did in my past life, a place I enjoy being.  If I can get to the gym then I must be getting better.

It was quite the experience.  I'm still strong - that's good news, but I have no endurance and NO coordination.  Trying to avoid classic Sarah too-much-too-soon, I chose to do half the reps at whatever comfortable weight, for whichever equipment I was comfortable trying out.  Free weights are too tricky - no way I can carry them to where I need to be.   I could only handle three leg exercises before my brain freaked out. It was really struggling to process my right leg participating but with no feedback. I also struggled a bit with the equipment.  I'd never really thought about how complicated it actually is, physically, to use weight equipment.  The logistics of adjusting, setting, sitting and reaching are a whole lot more than you think they are.

I managed to get in a couple of upper body exercises before the desperate search for a mat strategically located beside something sturdy to help me stand up.  Down is easy, standing up from floor level ... complicated! (Lie down on the floor then try to stand up using only one leg ... tough!)

So ... it was neither sexy nor glamourous, nor did it particularly do anything to increase my strength or endurance, but it was good for my sanity. I can't compare myself to two months ago, but if I compare myself to what I could do four weeks ago, there is some progress.

But best of all, I can say it only took me two months to get back in the gym.

I Haven't Disappeared

I'm still here.  I'm not depressed, or "down", or full of the blues.

Just bored.

And I don't have much to say.

My day-to-day life is settling into some type of routine, and I'm still in the recovery plateau, so there is nothing much new to report.  With the immediate recovery from surgery duly passed, progress now becomes measured in micro-successes. 

I'm stunned at how little energy I have this far past surgery ... I'm generally still sleeping 10-12 hours a day, and most of the awake hours are spent on the couch.  I do my hour of physio homework, or I go to physio (where he honestly tries to kill me ...) and I make an attempt to plan something for each day, but it never involves being off the couch for more than an hour at a time.

So, with nothing new to say each day (aside from boring you with the mundane details of day-to-day existence which everyone knows all too well from their own life), blog entries are slowing down.  It's just very slow nerve healing from here on in, to whatever degree these nerves are going to heal.  I'm not expected to notice anything new until, at a minimum, three months post surgery.  Another five weeks away.

In the mean time, I hobble, weeble, wobble and stagger along. Doing what I'm supposed to do and hoping for the best.

Recovery at Six Weeks

If you've been diagnosed with this lovely tumour, or something in the same family that involves messing around in your spinal cord, these are my answers to some questions I had before surgery. (If you are reading this to keep updated on how Sarah is doing, then there is some repeat info.)

My tumour was bigger than most by the time it was diagnosed, so my laminectomy was more extreme than others will encounter. If only one or two of your vertebrae and a smaller length of spinal cord is affected, then your recovery will not likely be as intense.  My neurosurgeon had to cut apart six vertebrae, graft a ligament from my thigh and leave me with 12" and 5" scars (but with modern technology, scars are nothing like they were even 10 years ago).

• The sexy hospital gown - I wore it for a month (honestly, they are the best jammies ever!)
• Morphine - man's best friend. I had no side effects and it managed my pain beautifully
• Laminectomy - full. Spinous process for six vertebrae are gone, replaced with a ligament from my thigh
• Scrubs - they make the nurses a little nervous, but fantastic to wear
• ass lying in bed for two days - for me it was seven days
• 3-7 day steriod taper - yep. They blast the crap out of you with steriods then wean you off them
• foley catheter - yep. 24 hours for me, then a week of them trying to get me to use a toilet. Joy.
• compression pumps on your legs - yep. six days for me
• deep breathing - not so much, they weren't very concerned about my lungs. Same with the incision, they were generally pleased with how it was healing, but did keep a close eye on it (them).
• physiotherapy - I really, really underestimated the intensity of how much physio I would need and get, but I also was only thinking about coming out of the hospital in best case scenario
• The Today I Take Nothing for Granted post makes me cry when I read it. You cannot fully appreciate what you have. Ever.
• You need to buy a wheelchair - nope. Not for me. It looks like the rollator is as fancy as I'll get. And then I'll hand-me-up it to my parents when my nerves have finally healed :)

At Six Weeks - Deficiencies

• Still no temperature or sharp pain sensations in my left leg.
• Still no vibration, soft touch or proprioception in my right leg
• Both feet are numb most of the time which makes walking on hard surfaces feel painful
• Both legs are numb up the back of my thighs and butt which makes sitting on hard surfaces feel painful

At Six Weeks - What I can Do

• Ambulate with caution and assistance
• Stand on my own (briefly - 2 minutes, max), but no twisting, turning or losing focus.
• I can function in my house and do household "stuff" ... with lots of rest
• Beginning to explore the outside world with extreme caution and in small doses. Yesterday I "went for a walk" outside.  From the stop sign to the west to the stop sign on the east and home.  Maybe 400 metres.

People Love Other People's Drama

This post started out as a retrospective on previous postings, questions I had had and answers that only experience could provide. In order to do that I had to find the questions I'd asked - I had a pretty good idea of where to look, but it still took some searching.  The way I chose to search also provided me with the stats on the blog, including the number of hits on each post.

I discovered something interesting.  Headlines are important to the reader (I know - anyone out there in journalism or media is shaking their head saying "no shit Sherlock, we've known that forever"). Headlines that hint at personal angst or trauma are the favoured kind.  The top three posts on this blog? Now I Need the Shrink, Extreme and the Shrink and I Didn't Get Myself Killed. Ah, the human instinct on how to predetermine what will likely be "interesting".

How to fill these posts with angst and drama to make it interesting to the reader?  Some days there isn't a way.  Some days are filled with monotonous boredom beyond description where my brain stagnates and I wonder if I'll ever have another intellectual thought again. Some days are filled with frustration as I look around at the small things that aren't getting done because I haven't had the energy to do it - small houses only survive on organization because there just isn't space to put everything "just anywhere". Most days are filled with the same routine over and over and over.

But that's going to change.  Yesterday I took charge of my life again.  Okay, everybody out !! It's been six weeks since the surgery. I think four weeks in the hospital and two weeks of babysitting are enough. I like having company, but I need lots of time alone. Alone is relaxing, peaceful, stress-free. Sure I get bored, but I don't get lonely. No I can't do 100% of everything yet. If I fall, I fall, I'll get over it. If I'm hungry, I'll figure it out.  If I need help with something specific, I'll ask.

I release myself of angst, and pass it to anyone who chooses to be burdened with it on my behalf.

Now, if only I trusted myself to drive ....

Squats and Storks and Stand ups

I have homework.

New physio, round 1, started today with a run through of workouts that I have to do as homework to compliment the physio done in-house at the hospital.  Okay ... cool. easy enough.

HA !!  I didn't do that kind of awful ab work when I was in the gym before surgery! You know, those dreaded leg raises and hold, hold, hold, hold.  Or leg extensions and hold, hold, hold, hold.  They were hard enough when I was able bodied, let alone now that one leg wants to wander all through the air and I have to focus intensely to try to even keep my feet together. 

And squats.  Really, what's up with the squats?  2 sets of 15 ... and I have to look after every one or two squats to make sure that my right foot/leg hasn't twisted out of alignment or position.  I hated squats when I had full use of my legs and I hate them now.  Too bad for me.

Lots of sit/stand repeats (oh, the things you take for granted), heel/toe one foot in front of the other balance work (yeah, I have to hold on for that one), and doing standing leg raises that made me feel very stork-like.  A wobbly-need-to-hold-on stork, but good practice for the leg.

Then the stretching and flexibility.  Sigh ... my hands haven't seen my toes in 30 years, and as much as I was making progress before surgery, it's all disappeared in the last six weeks.  I'm sure it looked like I was just sitting there with my hands on my knees, but honest, it was pulling the backs of my knees and hamstrings like crazy.


I'll be sore tomorrow, but it will be the good kind of sore - the kind where you accomplished a workout and you muscles ask you for a bit of space to recover. The kind of workout that makes you feel better for having done it. The kind of sore that means progress.

Steve and the Amputee

I met my new physio guy today.   We're going to get along just fine, he and I.

Today was my first out-patient appointment and it was all about the assessment.  I knew he would only have the referral information from the hospital, and a general overview of what is "wrong with me" so I was expecting the full, new patient assessment.  Aside from a few basic questions and strength tests, most of it was focused on "functional balance". The weeble may wobble but does it fall down?   Yay!!! I rock.  I scored 55 out of 56.   But my good leg took a beating to make that happen.

He started off with the hardest task possible - for me.  Stand, unassisted, for two minutes.   By the end of two minutes, every muscle in both legs was twitch, twitch, twitching.  It got easier from there.  He tested 14 things.  Stand without assistance.  Sit without assistance. Stand for 2 minutes.  Stand for 1 minute with your eyes closed.  Reach as far as you can, twist and look over your left shoulder, twist and look over your right shoulder. Step up and down on the stool, turn in a circle, now the other way.  Stand with feet together, stand with one foot in front of the other.  Stand on one foot, transfer from bench to chair with no aides.  Wow...  exhausted.  Oh, and my 'walk test" ... how far can I walk in two mintues?  274 feet.   Not even 100 metres.   Let's check that again in July ...


New physio guy (I'll call him "Steve" for privacy purposes) told me he'd push me ... that I probably wouldn't like him ... that he'd make me use my bad leg ... that he'd do everything he could to help those nerves start to talk to my brain.

Oh, honey ... you haven't met me !  One thing I can guarantee ... I will do everything you ask, and it will be you telling me that I need to rest for a moment.  Again,  I will be the best darn physio patient you've ever had, and there is no possible way that you can push me harder than I will push myself.

BRING IT ON !! 

As an aside ... this hospital specializes in both in-patient and out-patient rehab ... it's all they do. The hospital I was in for a month was filled with elderly stroke victims, but not this place. I'm not the youngest, and there is every disability you can think of. It was an eye-opener for me, especially walking behind the woman who had lost her right leg at the upper thigh/hip and  was learning to use her new prosthetic.  I don't know her story but she would probably trade me my problems in a heartbeat.  I may not be able bodied, but I have less to complain about than a lot of people.

Forgetting the Bad Stuff

I have to thank the people who convinced me to blog or otherwise diarize my experience. Yesterday was a glum kind of day so I chose to list my accomplishements as method of cheering myself up. I also went back to the beginning of this blog and reread all of my entries ... It was a  huge reminder of how far I have come.

We forget.  We truly do forget the bad stuff. I had forgotten that I lay in bed for six days with compression pumps on my legs. Rereading that was shocking ... I mean, I lay in bed for six days. Wow. I couldn't stand up on my own. I had forgotten the truly enormous effort of attempting to be vertical. I needed help doing everything, even moving from the bed to a chair.

It gave me the warm and fuzzies to realize that I am actually making progress ... I'm not stuck in an endless cycle of nothingness. Even in the short time that I have been home, if I think carefully, I can find progress in the small things.

I can:
carry a cup of coffee from the kitchen to the livingroom couch
- by far the most important accomplishment
stand up and sit down, carefully, without aides
- which sends people around me into a tizzy of don't fall !!!
make dinner, slowly and in steps with rests
- but no bbq's ... playing with fire is still a bad idea
clean the kitchen (see "make dinner" - I'm still no whirling dervish of cleaning)
- oh yay, that's just the skill you want to get back
go out in public
- the looks from people amuse me, so I am guilty of playing the crippled card sometimes
go up and down stairs by myself, with a cane
     - a little freaky on stone steps, but I'm getting used to it

These are things I took for granted on May 1st, but things I would have given anything to be able to do on May 3rd.

Is Existentialistic a Word?

This is not how I imagined the summer of 2012.  We were supposed to have a fabulous summer - kids will be away either at camp or working, and we had planned a two week vacation - a week in Rio de Janeiro and a week in Machu Picchu to walk the Inca trail.  Yeah.

Instead I sit here drafting an existentialistic blog post about the most dramatic (traumatic?) six weeks of my life so far, and how it has changed me. I reflect on the great contributions that some people make to society (my neurosurgeon, the front line medical professionals), and the totally self absorbed lives of others (mine).  I consider what I was doing with my life before this diagnosis (working) and whether or not and to what degree it will change me. 

This experience has shown me that I have surrounded myself with fabulous friends and family who have empathy and awareness for others. It has taught me to slow down and look around, enjoy some of the moment - that it really doesn't matter whether you do that next task now or in half an hour. I've discovered that the small accomplishments keep you going towards the bigger things.

I wonder how many of the things in my life leading up to now, prepared me for now.  Did I run so many marathons because it took that many to teach me to push, hard, through the last 10k; to learn that tired is a mental game, not a physical condition. To teach me that you don't always recognize progress during the training ... it isn't until you retrospectively look back and realize that that 20 miler felt easier than the one four weeks ago.

I don't believe that our lives are predetermined, but that the big and small decisions we make every day have a profound influence on where we go and how our lives are lived.  We get to blame our parents for our first 18 years :) but after that, we own our decisions.  We have to start each sentence with "I chose to ... "   Even when we say we had no choice, there were always options, just some more tolerable to us than others.

“There is something infantile in the presumption that somebody else has a responsibility to give your life meaning and point… The truly adult view, by contrast, is that our life is as meaningful, as full and as wonderful as we choose to make it.”  - Richard Dawkins

I didn't choose to grow a tumour - I do get to blame my body for that -  but I have chosen every step since that diagnosis. I chose surgery because the other options were intolerable to me. I choose to spend most days working towards recovery (and some days I choose to wallow) because the options are intolerable to me. I believe I will walk because of the choices I made (and continue to make). But I think there are times when there is something, someone, an instinct or whatever you choose to label it, trying to help us. That voice that said to me "get this pain properly diagnosed".

I choose to believe that our path is not laid out for us but that sometimes in our lives there are angels who tap us on the shoulder and whisper "listen carefully". 

Pay attention when they do, and choose wisely. 

Every Profession Has Its Yahoos

The Occupational Therapist (OT) was a farce.  Not the profession ... the individual person who arrived on my doorstep.

When I left the hospital I was offered temporary in-home physio and a home assessment by an OT.  Going on the theory that there is no such thing as too much professional help during times of crisis, I accepted both. Oy .. mistake.  But at least I've heard from the OT - I haven't heard anything from the physio people.  But, back to my sighing and head shaking ...

I got a call mid-week from someone advising that she had been assigned to my "case" (I have a case worker now ... that sounds ominous), and was Friday a good day to stop by, say 2:45pm.  Perfect timing - post nap, pre after school Friday craziness.  We're good to go. 

Friday morning turned out to be busy (okay, busy by the old person definition of "having more than one thing to do") and a friend stopped by for lunch and a great visit.  Her departure timed perfectly with nap time, but just as I was propping my feet up and getting my pillow settled ... phone rings ... OT, wanting to know if she can come now, and oh, she's only two blocks away.   Sigh ... back out to the front porch to await my new visitor.

I can't believe I missed my nap for that visit.  We spent 99% of the time on the front porch going through her paperwork answering questions that she didn't even bother to verify or observe - I could have said anything and she would have written it down.  She gave me lots of brochures on energy conservation, and pamphlets on other services her organization provides (for a fee), but zip, zilch in the way of good advice. 

Now, maybe that is because in the scheme of things I'm reasonably mobile and I live in a small house that's pretty accessible, or maybe it's because she didn't really want to be there (I was her last call on a gorgeous Friday afternoon).  Either way. Of the 6 minutes she was in the house, the only thing she commented on was that the toilet was awfully low.  No concerns that there is no handrail on the basement stairs and I can't get downstairs without one.

No, she wants to come back next week to confirm that their service installed an armrest frame around the toilet.

Like there's a hope in hell that's going to happen.

I Escaped !

It was a mini adventure into the real world, and a lesson that I can't go out alone for a long time, but I got out!  To the grocery store. 

It has been years since I've been grocery shopping with my mother, and we are compatible shoppers - both a little bit Type A, grocery lists organized by layout of the store - no, not so totally neurotic that it is aisle by aisle - and we give things to the cashier in order of heavy to light and durable to squishable.  There wasn't much I needed, and really it was an excuse to get out and do an errand, see how my energy levels lasted, and to see how my rolly Lexus coped in the world.

The grocery store was fine.  I haven't figure out yet, exactly, how one would push a cart AND use a walker at the same time, so that will have to wait until I have full-on energy to be able to use canes and cart for support for 45 minutes.  But it was a lesson in understanding that parents never stop worrying about their children.  I love my mother. She's fabulous (of course she's fabulous, I'm exactly like her :) ).  Supportive, energetic, helpful, loving ... all those things. 

But she's not as mean to me as she was when I was a kid.

I learned from this excursion that mean is better. The kind of mean that says "what are you looking at me for? you know how to use your walker, let's go".  The kind of mean that expects you to get through the task at hand. The kind of mean that will willingly step in and help, but you have to have tried and you have to ask for it. The kind of mean that slips M&Ms into the cart because everyone needs a treat sometimes.

I survived the adventure, there is milk in the house, and a full order of groceries being delivered this morning.  But a note to my kids ... I will continue to be mean to you because a fussing mom would drive you crazy.

Now I Need the Shrink

One thing our medical system misses is the psychological effect that a new disability has on a person.  They do their best to get you patched up, healed up, and physically moving again, but no one prepares you for the mental games that are going to unfold.  I'm into the ugly days - the epic battle between mind and body, what is going to change first ... body or mind?

I'm one of the lucky ones.  I have the luxury of believing that my surgery was a choice, that the damage done was done for the greater good, that the disability has a good chance of being resolved over time. Not many in my situation can say that.  But the attitude v disability games have begun.

At home I'm not busy enough. I don't have the hospital distractions to annoy me, the scheduled meals or physio, and the steady stream of people to interact with.  It's just me and those tasked with babysitting me. I'm not doing myself any favours by sitting around mindlessly doing nothing except getting up and walking once an hour.  I know that. I say I'm going to do something that day, but the seemlingly herculean effort to make it happen doesn't always come through.

The novelty has worn off and I'm just tired of this new version of me... If I could escape this body for a day, I would give almost anything to do it.  I'm tired of the aches, the pains, the discomfort and I'm tired of being tired.

And I knew this was coming. I have the luxury of having the resources to be able to research the impact of disability on the psyche, the ability to fully navigate our medical system, the smarts to get help when I need it, and I even know someone who has "been there done that" and is able to answer every question I have, give solid advice and predict what's coming next.

But it still sucks.

I will either heal or adapt or some degree of both, but today I want to be the old vivacious me who could do anything.  That's not the hand that I was dealt and there is nothing to be done to change that.  In the choice between moving on or the sleepiness of the depressed, I choose the family motto - "suck it up and get on with it". (I come from a long line of "yeah, it's hard work, so what" people, and I will not be the first to cave). But I've entered the time when it's hard, when I'm snippy, bitchy and ready to take anyone's head off.  The times when it is hard to be around me because you can never be me or understand my life. When I know I need to adapt to my new reality, but I'm still fighting it. When you can escape me, but I can't.

I was as prepared for these times as I could be, but it's going to be a bumpy ride. As much as I am aware of how good I have it compared to some, and compared to what would have happened without surgery, this battle of the old Sarah versus the new Sarah is inevitable.

Now if they'd only send a shrink instead of a personal care worker ...

I Didn't Get Myself Killed

Yesterday I missed Maury, and Dr. Phil was a lousy episode (he's really starting to veer down the Maury path ... I guess all the "serious" issues have been explored over the past 10 years).  But, I was successful at doing some self physio which helped keeps my legs from seizing up.  The cleaning lady came back for the first time in a long time, and apparently I was so zonked that I napped on the couch while they cleaned around me.  How is that possible! 

But I think my biggest accomplishment is that I'm off the narcotics!  Extra strength Tylenol seems to be doing the trick and my brain is much more alert.  The only problem is getting to the bathroom fast enough as the codeine works its way out of my system and all that which has been plugged becomes unplugged.  (How's that for TMI).  It truly is the small things in life that make your day to day tolerable or miserable.

I also survived my first dinner out.  Nothing fancy, just the local watering hole. We were fortunate to get a close parking spot and I managed to avoid getting killed in the parking lot. Right ... can't look for cars while I'm looking at my feet making sure that one foot is actually in front of the other - a spotter is required!   No crossing streets without someone to hold my hand :)   Sitting in an uncomfortable chair (that never used to bother me) made my body achy and my legs numb within half an hour, but I stuck it out until the bill was paid.

We were home before 8pm, but it was straight to bed and I was asleep before I could turn the lights out.  Apparently an hour and a half in the real world requires ten hours sleep to recover.

Patience is Not My Strong Suit

I have had several people tell me that over the last day or two.  I'd argue the point, but I think they're probably right :)

I have hit the inevitable first plateau and it does not sit well with my personality.  It came too early. I want to be able to "ambulate" more than 300 metres without having to take a nap right away. I want to go outside on my own (without that voice in my head saying "this is a really stupid idea" that stops me from doing it).  I want to be off the prescription pain killers so I don't feel so dopey. I want to be able to feel my stupid leg !

Today is another rant day ... it's still early in the morning and I've caught myself ranting to three people already.  Oops.  But I'm going on the theory that I'm allowed the odd day - as long as it doesn't turn into days or week(s).

So ... today is a good day to force myself to do some self-induced-physio, to have an afternoon nap, and hope that Maury has a good "who's your baby's daddy" show or Dr Phil is dealing with some psycho teenager, so I know my life is actually pretty darned good :) 

Maybe daytime tv, and the guys outside my front door fixing the sewers, might take my mind off my woes.

Lessons from the House

I am generally positive and optimistic (and overall grateful for what I didn't lose) but every now and then a rant is required.  The honeymoon phase is over, the novelty has worn off, and the frustration is setting in.  Normal and inevitable I would think.  You can't lose major motor function and not go through a phase of grumpy irritation at the world.

Things I've learned so far ...

I'm useless after 10 minutes.  Wow.  I continue to be amazed at how little I am able to handle, and struggle to remain convinced that I'll get my energy back sometime in my lifetime.

I'm so grateful for the pre-surgery Sarah that focused on getting the house organized, especially the laundering of the bedding.  Not so much for the ability to crawl into a clean bed, but that I don't have to be thinking about washing sheets this week!

Being away for a month means there is no food in the house.  At all.  Next time I would arrange for a delivery service to deliver a whack of groceries first day home.

Making it a priority to fill the painkiller prescription is important.  Enough said.

Get  your butt into bed when the old people do. I pushed it too late (seriously? when did 9pm become too late?) and paid the price in physical ability and mental attitude. I flopped into bed discouraged that my right leg wasn't behaving and that this rehab would never end. 

Expect plateaus. Even as much as I expect plateaus, I don't actually expect them because, I am special and will be the exception to ALL the rules. Right.

I'm bored.  Bored, bored, bored, bored, bored.  I need a hobby ... fast. Not work, not helping out with your work.  Something that I can do when I want to, but without the feeling that I have to. Crocheted lap blankets anyone? Macrame is back in fashion ... hanging plant holders?  And I'm still seriously considering starched lacy doily christmas tree ornaments!

When it's cool and rainy outside it's even more boring.

I'm going to have to create my own structure until out-patient rehab starts, and force myself to do something rehab-ish twice a day.  10am and 2pm.

I'd love to find those "studies" that the hospital people kept refering to.  You know, their justification for kicking people out so fast.  Those "studies show that people improve faster in their home environment".  Right.  People get bored in their home environment. People do stupid things in their home environment. People don't get motivated to do any self-rehab in their home environment, and I'm sure there is a large percentage of people who wallow in depression in their home environment.  We won't even get into the scientific validity of any study that has no control group.  (Without cloning, how does one, exactly, say that person A improved more at home than they did in a live-in setting.)

I eat less at home ... especially if I have to make it.  Maybe I will be able to shed those hospital pounds.

I can't stand a messy house, and not having the ability to do anything about it.

End rant :)

Canes, Trains and Automobiles

I couldn't find a way to work "trains" into this post, but the title just doesn't have the same effect without it.

To quote my eloquent teenaged daughter ... "who ever thought we'd be shopping together for canes !" That was her response to receiving several texts with pictures of canes I was considering.  I came home from the hospital with a couple of sexy, $15, drug store model canes.  Wahoo !  Not.  I'm too young to be walking around with institution canes ... I need canes disguised as fashion accessories.  If I have to be the gimpy gal and can't wear my designer heels, and if I have to use canes when I go back to my suit job, I want something with a little more personality. Call them vanity plates :)

There is a whole world of canes out there, just not in stores.  I wasn't motivated to do an extended search for a custom canes or specialty canes store in my city - I knew that would just result in having to traipse half way around the world to get there on the chance that they had something I liked.  But there is an on-line world who will deliver to your door in a couple of days.  I loooove you, internet.  I found a pair I like, in-stock, within the cost that my insurance company will cover, and most awesomely, their standard size is the exact size I need! 

My inbox shows that my order has shipped ... yay!

This morning we went to buy a rollator - what a lousy word, surely some marketing guru could have done better than that.  The best thing I did for myself was research it on-line first.  I read all the "what to look for in a rollator" sites I could find, as well as investigating manufacturers and the various makes and models.  Sounds like impressive google work, but really, it's not like I had anything better to do except daytime tv.  Turned out to be my best-spent google time recently - I walked in already knowing what make and model I wanted.  I would NOT have had the energy to deal with a sales person, a sales pitch, learning the ins and outs of rollators in the store and having to make a rational decision.  Nor would I have had the energy to go back ... this was a once-and-done shopping trip.

I'm the proud owner of this hot rod !  I'm going to call it my Lexus NeXus :)  Where the heck are those cup holders ! As much as I hate to say it, this really not-fashion-forward-for-the-forty-set pair of wheels has made my day so much easier. While I can handle canes, they are tiring (have I said that before?) This sexy thing gives me enough relief to do just a little bit more, and hey ...  you can't beat bringing your own seat!  I'm so (emphasize soooooo) not a basket person but it's easily removed should my vanity be showing when I venture outdoors.

If you had told me a year ago that I would be excited about canes and rolly walkers - for myself - I wouldn't have even bothered to tell you you were out of your mind. My look would have said it all.

.Hey ... Where's My Fancy Bed?

I was packed and ready to go last night (yeah, I'm kinda like that ... even worse when I travel) with just the essentials left out for the morning.  Not so bad that I slept in today's clothes, but it crossed my mind :)  That's what hospital gowns are for.

All of the hospital signs and documentation say that discharge is before 9am (emphasis on the "before"), so like  a good patient,  we were ready to go around 8am.   Having experienced hospital life for so long I thought we'd be lucky to be out of there by 10:30am .. go figure, apparently discharging people is a priority!  9:30 we were in the car. (The feisty old porter lady volunteer is a whole other post).  Bye, bye, and as promised, I didn't let the door hit me on the way out.  :)  I will have to go back when I have my follow up with the surgeon and say a proper thank you to some specific nurses and other staff.

Front steps?  Piece of cake ... totally different from two weeks ago.  I no longer feel trapped in the house.  Moving around the house?  Canes make my narrow-doorway house so much more accessible.  I can now go everywhere with relative freedom, in my wonky walking kind of way.

I even tried making my own lunch.  My S.O. was very patient and stayed out of my way until he asked, with that "offering to help look" that couples have ... you know that look he gives you when he's offering help without actually saying "do you want help with that?"  Lunch wiped me out.  Nap time. Not the sleep for three hours, what day is it when you wake up, nap, ... just a regular, normal person nap. Lunch was the extent of my culinary adventure and dinner was solely on the shoulders of my S.O.  Had I been on my own, I would have been cooking by telephone.

Did I mention in any previous post that hospital food was, um, bland, blah, overcooked, over processed, and totally textureless?  The two meals at home today have been gloriously full of texture, flavour and they actually required chewing!

I am happy to be home, even if I don't have a Craftmatic bed. Hanging around the house is going to get very boring pretty quickly, but tomorrow I make my first venture into the world when we go shopping for my geriatric rolly walker.

30 Days in the Hospital - Going Home

Walking
All through these posts I've talked about walking and how my walking is progressing, but I suspect that your definition of walking and my new definition of walking are different. Yes, I am vertical and I'm putting one foot in front of the other, most of the time.  My muscles are strong from the workouts before surgery, but my legs have no endurance ... two laps around the hallway is about 300 metres.  That's it.  I'm done. Have to rest my legs for at least an hour before I try to do anything that involves being on my feet.  I'm not walking all over the hospital, wandering around whacking people with my cane, instead I cautiously make my way around the hall in my unit, staying close to the rails installed on the wall. 

Fortunately I live in a small house, so endurance can be built, but me and my canes are not ready for the outside world ... I'll need wheels for that for a while.

Carrying Stuff
Canes are fabulous for mobility in small spaces, but really not so good for carrying stuff.  How do I get my cup of coffee from the coffee maker to the table? How do I bring in the mail? How do I carry a plate to the dishwasher? As I think about my daily life at home, I'm surprised at the amount of things I carry or pick up over the course of a day.  Take a moment and think about what you did in the first hour you were up this morning.  If you brushed your teeth, you picked up your toothbrush and toothpaste ... both at the same time. You made coffee or tea and took it to your favourite place to drink it. You carried your clothes from the closet to where you actually put them on. You pulled out your transit pass ...

Yesterday the Occupational Therapist had me make coffee and boil and egg.  It took 35 minutes. She suggested that for the first week, I plan for an hour for any task that would have taken me 10 minutes. Upon consideration, life walking with two canes is a complicated life.

The Big Bad Outdoors
Then there is the real world. Outside.  Right now, walking outside is an unrealistic expectation. I am confident that that progress will come, but it's not here today. I will have some problems to solve when I'm ready to tackle more than my front porch.  When I can drive, can I go alone - how do I get my wheelchair out of the trunk, exactly? How do I push a grocery cart? How do I get into a place that isn't "accessible"?  It looks like the answer is that I don't go out alone at first ... sigh, more being babysat :)  But I'll get there ... practice, practice, practice, build the endurance and I'll be able to go alone when I can handle canes outside.  Or with my "geriatric rollator" that has a seat :)

People who have many more disabilities than I do, do these things. They do them every day.  I solve problems and try to improve processes for a living, so I know I'll figure it out. It just needs some good thinking, some input from people who know stuff, a bit of trial and error and a make it happen attitude.

I'll be fine.

A special thank you to the great nursing and physio staff in rehab ... I'll walk in and visit some day soon.

They're Driving Me CRAZY !!

It looks like yesterday's flake day - the morning nap turned into an almost full day of sleeping - did the trick and I have rejoined the world today.  I am at one with the universe (well, as much as I ever could be), and life is good.  It's not quite Zen, but spending a month in the hospital with new disabilities has taught me a lot about giving up control of things that don't matter.  It's much more relaxing when you aren't trying to control the small things, when you don't let anxiety kick in if things aren't marching to your schedule and you let the world ebb and flow around you a little more.

That being said ....
(Of course there's a "but" when we're talking about Sarah being Zen.  I can only stretch my boundaries so far in a month.)

Institution life is beautiful in that you don't have to do anything, but now that I'm off the power pain killers my cognitive processes are fully back on-line (I think).  An interesting aside: I enjoy number puzzles and brought a couple of books with with me.  In the week or so after surgery (when I thought my brain was fine), I thought "wow ... I bought books that were way too hard for me", and there were lots of sneak peeks at the answers.  As the days pass they are getting easier.  I brought them for something to do, but it turned into an interesting retrospective of progress and really highlighted to me that we are absolutely incapable of accurately assessing ourselves.  It must be why some elderly still think they're fine driving, or why we don't recognize depression or stress building in ourselves. 

Sorry ... back to institution life ...

When you're in your own environment, things happen according to your schedule, or the schedule required to make your family life tick along nicely.  In an institution, everything runs on institution time, according to institution policy.  I know I'm getting better because it is starting to drive me crazy.

• Pills at 6:15am.  I don't care what time you went to sleep or if you're still asleep ... wake up !!
• Vitals check once per shift.  Which means I've had my blood pressure, blood oxygen, heart rate and temperature taken at least 60 times in May.  (More, because for my first week, ICU and the wards were checking once every four hours).
• Rehab guys run on their own schedule.  So don't go anywhere all morning because they may come looking for you at 10, 10:35, 11 ... and if you miss them, they move on to someone else and your session may not happen.
• Naps get interrupted.  After lunch, around 12:45, is the perfect time for a doze before afternoon physio, but menu lady comes waltzing in around 1:15.  sigh ... half hour nap, tops.
• When you want them to bring pain killers, they're busy.  Long afternoon, worked hard in physio, I'm hurting and my afternoon pain killer deadline has passed.  I have to find the nurse somewhere. (Couldn't they switch up their 6am attitude with their afternoon attitude?)
• They don't enforce the visiting hours.  This is rehab.  Everyone will still be here tomorrow. Get the family and friends out!
• Knock before entering.  I'm probably changing.  That's Murphy's Law.
• The management staff on the floor are like sasquatch - lots of rumours that they exist, but you've never seen evidence of them.
• Hospital food.  Enough said.

I won't let the door hit me on the way out.

I Need a Break Today

Today is one of those inevitable days where both body and spirit conspire against me to say "nope, not today".  The morning shower was a struggle, the coffee run was tiring and I didn't enjoy watching the world go by outside.  Even sitting in the chair by the window doing Kakuro was tiring.  Maybe it's my body's way of saying that I need recovery time from the hard work.  It's telling me to stop pushing all the time and just sleep for once.  Not every waking moment needs to be a working moment. 

So for the first time in three weeks I'm back in bed at 9:40am. Even if I don't sleep - which I likely will given the heaviness of my eyes - at least I'm resting and my aching back is well supported.  I'm comfortable. And warm.  Go figure - I was super hot all the time and finally got a fan, now they've turned the air conditioning on and I'm freezing all the time.  Life.

I'm also spoiling for a fight today, if I can gather up the energy.  My Occupational Therapist has really annoyed me with her "at home you should be able to" attitude.  Um, honey ... have you ever been disabled?  If not, then you don't know sweet pea all about what I "should" be able to do ... you can only assess based on what you see I CAN do. And then there's the wheelchair thing. Last week she was telling me to arrange for my doors to be widened so a wheelchair can get through them, this week she's telling me I won't need a wheelchair, this morning she gives me a list of stores that sell equipment and the first item in her recommended list is a wheelchair!!  Make up your fricken mind !!!

The administration here have steadfastly stuck to their discharge date with the "go home and we'll send you homecare" attitude.  All arguing, convincing, cajoling or advocating on my behalf has gotten nowhere.  Suddenly today there is the offer of out-patient services at a well respected rehab hospital close to home, or one to two months at a respite care live-in facility that does rehab. Holy heavens, make up your mind. Or at least give me the details so I can make up my mind.

Body and spirit need a rest, and I'm spoiling for a fight.  A good day to close the curtain and get some sleep so I can get into a better frame of mind for the rest of the day. They're kicking me out soon, so every minute counts.

Proprioception and the Wonky Walking

Now that most of the swelling has gone down, we seem to have a handle on what symptoms were swelling related (the constant pins and needles firing in my legs) and what is actual damage related.

proprioception   pro·pri·o·cep·tion (prō'prē-ō-sěp'shən) n.
The unconscious perception of movement and spatial orientation arising from stimuli within the body itself.

Of which I have none in my right leg.  Starting from the hip, over to the mid-line, all the way down to my foot, front and back. Just like a petulant child, my stimuli from within my right leg are giving my brain the silent treatment.

Close your eyes and think about how you are sitting right now ... where are your legs and how are they positioned? Are your legs crossed, are they tucked under the chair with your ankles crossed, out in front of you on the couch with one knee bent?  I can't do that. My right leg sends no signals back to my brain to tell me where it is and what it's doing.  To know where my right leg is right now, I have to look. Sitting, standing or lying down I don't know if or how my knee is bent, how my foot is positioned, or where my leg is in relation to my left leg. 

Walking, either with canes or walkers,  means looking at my right leg.  Always. Otherwise I fall down.  My stride is odd because I don't know the bend of my knee. Planting my foot is gawky because I can't align it properly. No feedback from leg to brain, just motor requests from brain to leg.

I am a fan of the google, and have spent some time looking up the loss of unconscious proprioception, and came across an interesting, reasonably respectable website

Brown-Sequard Syndrome is a rare spinal cord condition that is caused by an incomplete lesion to the spinal cord. This damage can be caused by a spinal cord tumor, ischemia (obstruction of a blood vessel), trauma ... or infectious or inflammatory diseases.

A lesion to the fasciculus gracilis or fasciculus cuenus (as pictured below in the top blue section) will result in loss of light touch, vibration sensation and proprioception.

Individuals have a relatively good prognosis. ... More than 90% of affected individuals successfully regain the ability to walk. ... Recovery period is, on average, two years, but it depends on the degree of damage suffered by the individual. (1)

Interestingly, my left leg is suffering from damage to a slightly different area of the spinal cord, and I don't have temperature or pin prick sensation. (Dull pain comes up a different tract than sharp pain). "Unlike injuries of the other tracts, injury to the lateral spinothalamic tract causes contralateral loss of pain and temperature sensation" (2) (Contralateral being the other side of the body ... thus my left side) Proprioception? Check! Therefore walking is no problem.  I just can't check the temperature of the bathwater with that foot. By all accounts, this should heal the same way the other damage heals.

I know you can find anything you want on google, but I'm thinking this article suits my positive attitude.




(1) www.macalester.edu
(2) http://emedicine.medscape.com/article/793582