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