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.
Thursday 31 May 2012
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.
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.
Wednesday 30 May 2012
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.
I won't let the door hit me on the way out.
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.
Tuesday 29 May 2012
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.
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.
Monday 28 May 2012
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
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
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)
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
Sunday 27 May 2012
The Small Things
The other day my parents lent me a book My Stroke of Insight that, ironically, I had given to my father as a gift a year or so ago. Written by a neuroanatomist, it's about her journey to recovery after suffering a massive stroke in her left hemisphere at 37 years old. While her resulting disabilities were much more serious than mine, I found it to be a fascinating read and there were some parallels between her story and mine.
I share her unwavering belief of recovery, her willingness to do the hard work and her fascination about what happened to her. In her chapter on "What I Needed Most" She writes about needing people to treat her as if she would fully recover, needing to have dreams to work towards and needing visitors to bring their positive energy. But the section that really caught my attention was "it was important that we focus on my ability, not my disability" (1) The author talks about staying focused on how well she was recovering by celebrating achievements every day and if she didn't, how easy it was to focus on the vast number of things that were lost.
That got me to thinking. Do I celebrate my small successes? Do I pay attention to the small things I'm gaining every day or every few days? Aside from my weekend at home where I dwelled on the lost, I stay focused on the positive in attitude, but do not pay attention to the small things. I've been focused on the end goal - walking. It's been all about the walking. I'm sure I've had small successes, and probably lots of them, but they have been achieved without recognition and celebration.
Today I've taken a moment to reflect. I've blogged about the big stuff, but what of the small things ... those day to day changes that cumulate in the big successes. Do I even know what they are? It's taken more than a few moments of thinking, but I have had successes that should be celebrated.
Some of the small things:
I'll never take my eyes of the main goal, but I agree with the author. "I may not be in total control of what happens to my life, but I certainly am in charge of how I choose to perceive my experience" (2)
(1) (2) Bolte Taylor, J. My Stroke of Insight. (2006). New York: Penquin Group
I share her unwavering belief of recovery, her willingness to do the hard work and her fascination about what happened to her. In her chapter on "What I Needed Most" She writes about needing people to treat her as if she would fully recover, needing to have dreams to work towards and needing visitors to bring their positive energy. But the section that really caught my attention was "it was important that we focus on my ability, not my disability" (1) The author talks about staying focused on how well she was recovering by celebrating achievements every day and if she didn't, how easy it was to focus on the vast number of things that were lost.
That got me to thinking. Do I celebrate my small successes? Do I pay attention to the small things I'm gaining every day or every few days? Aside from my weekend at home where I dwelled on the lost, I stay focused on the positive in attitude, but do not pay attention to the small things. I've been focused on the end goal - walking. It's been all about the walking. I'm sure I've had small successes, and probably lots of them, but they have been achieved without recognition and celebration.
Today I've taken a moment to reflect. I've blogged about the big stuff, but what of the small things ... those day to day changes that cumulate in the big successes. Do I even know what they are? It's taken more than a few moments of thinking, but I have had successes that should be celebrated.
Some of the small things:
- I can put my right foot into my sandal without having to control the foot with my hands.
- I can now stand on one leg (the bad one) to put on my scrub pants when getting dressed. I still hold onto a bar, but I can weight bear on the bad leg and lift the good foot off the floor ... for more than a nanosecond.
- I'm a wicked wheelchair driver - totally have the hang of it :)
- When I'm sitting, I can lift my right knee straight up with more control.
- I changed the sheets on my bed on my own this morning
- I can use a regular toilet without a commode (some would argue that's a big success :)
- I can cross and uncross my legs with able-bodied grace
- I can't call my right leg spazzy anymore ... I've almost completely overcome that party trick
- I can write my Cheesy Quote of the Day on my whiteboard, standing up without holding on to anything (for what it's worth, today's cheesy quote is "If you want to test your memory, try to recall what you were worrying about one year ago today" - E. Crossman)
- In the morning I get up, showered, dressed and go for coffee ... with total independence. The coffee run still requires a wheelchair, but I do it all myself.
- I had the endurance to walk two loops of the floor today instead of one.
I'll never take my eyes of the main goal, but I agree with the author. "I may not be in total control of what happens to my life, but I certainly am in charge of how I choose to perceive my experience" (2)
(1) (2) Bolte Taylor, J. My Stroke of Insight. (2006). New York: Penquin Group
Mrs. Doubtfire
I will preface this with a couple of things. I searched all over the internet for the clip from the movie Mrs. Doubtfire that I wanted and couldn't find it, but the trailer is close. Also, in the interests of privacy any specifically identifying information about my ex-suite-mate has been changed, but the story remains otherwise factually intact.
Mrs. Doubtfire
To set the stage: My ex-suite-mate was originally from Scotland, she had the accent (all quotations need to be read with the appropriate accent), the vocabulary you would stereotypically expect, and an out-going, highly social personality. I found out over time that she is in her early 70s, and had unexpected serious surgery, and a boyfriend ("oh no, we don live together ye know, I have me own place"), and was going deaf. Everyone around me thought they were a sweet old couple, but when you live with it 24/7, sweet becomes old really fast. I mean real fast.
The Nickname.
I had people visiting at a time when she was in high-social-mode ... one of those times when she would call everyone in her address book (literally) and repeat the same story to each one of them. We could hear everything, but see nothing. So in the midst of one of these conversations, one of my guests said "OMG ... it's Mrs. Doubtfire .. 'I'm here to see the children'". It's a good thing we weren't eating at the time, there would have been half chewed food all over the floor. She was the perfect Mrs. Doubtfire ... the nickname was born.
The Boyfriend
In his defence, Herb seemed to be a truly kind man, and had enough awareness that when he was around he encouraged her to talk more quietly. He also brought headphones for her tv (which she promptly forgot to wear whenever he wasn't around). He would dutifuly come see her twice a day: once in the mid-day, but the second time, he usually didn't arrive until 7 - 7:30 and he wouldn't leave. Again, from everyone else - oh but they're such a sweet old couple. Yeah, not every day they're not. Not until 10:30 at night they're not. GO HOME, she has a roommate. Thinking that way made me feel alternately bitchy or justified, depending on the night. Visiting hours are until 8pm ... why are you putting me in the position of feeling bitchy about wanting you to leave. This isn't the cardiac unit ... she's still going to be here tomorrow.
The Character Trait
Like everyone, there are traits in people that I'm not particularly fond of. But one in particular, especially in women, is pathetic weakness. That whimpering, whiny, inability to form an opinion without the validation of someone else. Not the regular do-you-agree-because-it's-an-important-decision check in, or the infrequent do-you-agree-because-I'm-not-sure check in that most people have with their significant others, ... I mean the constant, incessant, validation type. I counted once. In an hour she used the sentences: "what do you think Herb", "am I right Herb", "I doing good, aren't I Herb" 14 times. That's once every four minutes and 18 seconds. I wanted to reach through the curtain and tell her to grow some self esteem. I won't even get in to her ability to whine ... award winning.
The TV
I have overheard more Anderson, American Idol and Dancing with the Stars than I care to in a lifetime. If she knew the song, she'd sing along. Enough said.
The Name Repeating
Because she was going deaf, every conversation - phone or in person - was held at full volume. No chance of escaping it. I knew every piece of her business that she chose to share with anyone. At first it was amusing that she had a habit of repeating the name of the person she was talking to. "oh, isn't that lovely Paula. Oh, you must be sooo excited Paula. You know Paula, they're letting me home at the weekend Paula." Then it became not so amusing, then it became downright irritating. One of my guests counted the time gap between name use ... in one phone call, she used the person's name every 10 seconds or less. That's impressive Paula.
The Visiting
At first I didn't mind her so much because she kept her socializing to her own circle (notice how many of my sentences start with "at first"), so I was okay. But one day one of her guests said .. "oh, you have a roommate" and popped her head through the curtain .. "hello there!" Um, hello yourself and get out of my room. That's not what came out of my mouth, but it's pretty close to what I thought. That was the end of it for me. After that my suite-mate had to socialize .. "oh, that was Herb's sister you know". "Herb's sister asks after you, hopes you're doing well you know." through the curtain. Then she started up with the spontaneous visiting "hellooo, hellooo, hi, hi" .. as she's coming into my room and plunking herself down in a chair. Uh boy.
That's when I asked for the private room.
Update since I drafted this post: She came by to say hello and to complain that her new suite-mate is incredibly noisy and the husband never leaves. Ah ... the irony.
Mrs. Doubtfire
To set the stage: My ex-suite-mate was originally from Scotland, she had the accent (all quotations need to be read with the appropriate accent), the vocabulary you would stereotypically expect, and an out-going, highly social personality. I found out over time that she is in her early 70s, and had unexpected serious surgery, and a boyfriend ("oh no, we don live together ye know, I have me own place"), and was going deaf. Everyone around me thought they were a sweet old couple, but when you live with it 24/7, sweet becomes old really fast. I mean real fast.
The Nickname.
I had people visiting at a time when she was in high-social-mode ... one of those times when she would call everyone in her address book (literally) and repeat the same story to each one of them. We could hear everything, but see nothing. So in the midst of one of these conversations, one of my guests said "OMG ... it's Mrs. Doubtfire .. 'I'm here to see the children'". It's a good thing we weren't eating at the time, there would have been half chewed food all over the floor. She was the perfect Mrs. Doubtfire ... the nickname was born.
The Boyfriend
In his defence, Herb seemed to be a truly kind man, and had enough awareness that when he was around he encouraged her to talk more quietly. He also brought headphones for her tv (which she promptly forgot to wear whenever he wasn't around). He would dutifuly come see her twice a day: once in the mid-day, but the second time, he usually didn't arrive until 7 - 7:30 and he wouldn't leave. Again, from everyone else - oh but they're such a sweet old couple. Yeah, not every day they're not. Not until 10:30 at night they're not. GO HOME, she has a roommate. Thinking that way made me feel alternately bitchy or justified, depending on the night. Visiting hours are until 8pm ... why are you putting me in the position of feeling bitchy about wanting you to leave. This isn't the cardiac unit ... she's still going to be here tomorrow.
The Character Trait
Like everyone, there are traits in people that I'm not particularly fond of. But one in particular, especially in women, is pathetic weakness. That whimpering, whiny, inability to form an opinion without the validation of someone else. Not the regular do-you-agree-because-it's-an-important-decision check in, or the infrequent do-you-agree-because-I'm-not-sure check in that most people have with their significant others, ... I mean the constant, incessant, validation type. I counted once. In an hour she used the sentences: "what do you think Herb", "am I right Herb", "I doing good, aren't I Herb" 14 times. That's once every four minutes and 18 seconds. I wanted to reach through the curtain and tell her to grow some self esteem. I won't even get in to her ability to whine ... award winning.
The TV
I have overheard more Anderson, American Idol and Dancing with the Stars than I care to in a lifetime. If she knew the song, she'd sing along. Enough said.
The Name Repeating
Because she was going deaf, every conversation - phone or in person - was held at full volume. No chance of escaping it. I knew every piece of her business that she chose to share with anyone. At first it was amusing that she had a habit of repeating the name of the person she was talking to. "oh, isn't that lovely Paula. Oh, you must be sooo excited Paula. You know Paula, they're letting me home at the weekend Paula." Then it became not so amusing, then it became downright irritating. One of my guests counted the time gap between name use ... in one phone call, she used the person's name every 10 seconds or less. That's impressive Paula.
The Visiting
At first I didn't mind her so much because she kept her socializing to her own circle (notice how many of my sentences start with "at first"), so I was okay. But one day one of her guests said .. "oh, you have a roommate" and popped her head through the curtain .. "hello there!" Um, hello yourself and get out of my room. That's not what came out of my mouth, but it's pretty close to what I thought. That was the end of it for me. After that my suite-mate had to socialize .. "oh, that was Herb's sister you know". "Herb's sister asks after you, hopes you're doing well you know." through the curtain. Then she started up with the spontaneous visiting "hellooo, hellooo, hi, hi" .. as she's coming into my room and plunking herself down in a chair. Uh boy.
That's when I asked for the private room.
Update since I drafted this post: She came by to say hello and to complain that her new suite-mate is incredibly noisy and the husband never leaves. Ah ... the irony.
Saturday 26 May 2012
I Felt My Sock (and other exciting events this week)
I Felt My Sock
I know it doesn't sound like anything, but yesterday I felt my sock. For me and physio guy it was jump up and down, dance around, big deal status.
When I first got to the rehab unit two weeks ago, one of the first things physio guy did was a sensory test on my right leg. He rubbed a rough towel, a kleenex and a pillowcase up and down my calf/shin while I had my eyes closed to see if I could determine which one he was using. While I was able to figure it out, it wasn't by texture, it was by degree of pins and needles shooting up my leg. During yesterday's session he left me sitting on the physio table while he went to get something. While I was sitting there, bored, I happened to move my right leg and I thought "wow, that plastic is cold". HOLD ON !! Did that thought just go through my brain? Plastic? Did I feel plastic? Quick!! Test !! I grabbed my sock and rubbed it up and down my calf. ... I felt sock!. Double check against the good leg, same feeling.
Houston, we have sensory progress. She can feel the texture of her sock.
I Have All the Toys
This week saw a shoot up in the intensity of walking in physio, and oh, shockingly, an exponential increase in my walking ability (oh, no correlation there). I should clarify that - I'm very, very far from walking without assistance because I still don't know where my right leg is, aside from "attached at the hip". Ability is relative and according to those who know stuff, I'm doing well considering it's only been three weeks.
That being said, there's been a lot of practicing in the halls with my walker, and practicing in physio with canes ... I'm stubborn, and dedicated, and I really, really, really want to walk again, so every couple of hours I'm up doing something on my feet. I do have to be careful because I'm at that phase where I'm most likely to fall ... confident enough to do things without full focus but newbie enough to make that one wrong move. Kaboom, crack head open, 20 pages of paperwork. I must continue to be careful. But, in order to be able to practice this weekend, physio guy took a risk - he gave me new toys. I now have a wheelchair, a "rollator" (see picture) and two canes.
They all have green stickers.
New Roommate
I have a new roommate. No more Mrs. Doubtfire (and I will dedicate a post to her ... there is so much to say). I had quietly asked for a new room a couple of days ago. No need to make a big fuss, just a quiet "when one comes available ... " to the nurse in charge.
Yesterday there was an unexpected discharge (in a hospital, that could mean a lot of things), but score one for me. Beds don't stay empty for more than a nanosecond, and Rehab was getting huge pressure from another unit to fill the bed ... gotta send you our person NOW !! Talk about bullying ... wow, those cardiac, surgical, neuro etc. units, all think they're so special, and walk all over rehab. Gotta move, gotta move, gotta move. My nurse lets me know I'm moving sometime in the next few hours and I'm packed in a matter of five minutes (which was fine this time because I was the one doing the packing), Because of the almighty rush, I get punted out to the lobby while they clean my part of the suite and move the new person in. Eventually the discharged person leaves, staff clean the room, and I move in.
My new roommate is wonderful. I don't have to share anything, I can be noisy or quiet, and I will have the world of peace. My new roommate is the best kind of roommate.
A private room.
I know it doesn't sound like anything, but yesterday I felt my sock. For me and physio guy it was jump up and down, dance around, big deal status.
When I first got to the rehab unit two weeks ago, one of the first things physio guy did was a sensory test on my right leg. He rubbed a rough towel, a kleenex and a pillowcase up and down my calf/shin while I had my eyes closed to see if I could determine which one he was using. While I was able to figure it out, it wasn't by texture, it was by degree of pins and needles shooting up my leg. During yesterday's session he left me sitting on the physio table while he went to get something. While I was sitting there, bored, I happened to move my right leg and I thought "wow, that plastic is cold". HOLD ON !! Did that thought just go through my brain? Plastic? Did I feel plastic? Quick!! Test !! I grabbed my sock and rubbed it up and down my calf. ... I felt sock!. Double check against the good leg, same feeling.
Houston, we have sensory progress. She can feel the texture of her sock.
I Have All the Toys
This week saw a shoot up in the intensity of walking in physio, and oh, shockingly, an exponential increase in my walking ability (oh, no correlation there). I should clarify that - I'm very, very far from walking without assistance because I still don't know where my right leg is, aside from "attached at the hip". Ability is relative and according to those who know stuff, I'm doing well considering it's only been three weeks.
That being said, there's been a lot of practicing in the halls with my walker, and practicing in physio with canes ... I'm stubborn, and dedicated, and I really, really, really want to walk again, so every couple of hours I'm up doing something on my feet. I do have to be careful because I'm at that phase where I'm most likely to fall ... confident enough to do things without full focus but newbie enough to make that one wrong move. Kaboom, crack head open, 20 pages of paperwork. I must continue to be careful. But, in order to be able to practice this weekend, physio guy took a risk - he gave me new toys. I now have a wheelchair, a "rollator" (see picture) and two canes. They all have green stickers.
New Roommate
I have a new roommate. No more Mrs. Doubtfire (and I will dedicate a post to her ... there is so much to say). I had quietly asked for a new room a couple of days ago. No need to make a big fuss, just a quiet "when one comes available ... " to the nurse in charge.
Yesterday there was an unexpected discharge (in a hospital, that could mean a lot of things), but score one for me. Beds don't stay empty for more than a nanosecond, and Rehab was getting huge pressure from another unit to fill the bed ... gotta send you our person NOW !! Talk about bullying ... wow, those cardiac, surgical, neuro etc. units, all think they're so special, and walk all over rehab. Gotta move, gotta move, gotta move. My nurse lets me know I'm moving sometime in the next few hours and I'm packed in a matter of five minutes (which was fine this time because I was the one doing the packing), Because of the almighty rush, I get punted out to the lobby while they clean my part of the suite and move the new person in. Eventually the discharged person leaves, staff clean the room, and I move in.
My new roommate is wonderful. I don't have to share anything, I can be noisy or quiet, and I will have the world of peace. My new roommate is the best kind of roommate.
A private room.
Friday 25 May 2012
Oxy Withdrawal
I know they don't want me to be a prescription druggie, but this place is big on stopping things before I'm ready.
In my conversation with my neurosurgeon this morning I'm told I need to come off the Oxy. Yipes! 40 mg a day isn't that much. But, I agree that I don't want to be on it, so I need a wean-me-off plan because I already get withdrawal symptoms between doses. Solution ... Tylenol 3s during the day, 10mg Oxy at night. I'm not sure what I was thinking, exactly, but apparently he was thinking "as of now".
2pm rolls around, which, in this world of being 90 years old, is pill time, and my little pill cup arrives with only one little, lonely pill in it.
Me - "Hey ... what happened to my extra strength Tylenol? What happened to my Oxy?"
Nurse - "Well, the doctor changed your prescription."
Me - "Okay, we talked about that, but what does that mean, exactly?"
Nurse - "It means T3s every six hours."
Me - "Already?"
Apparently.
I take a moment to ponder. Okay ... T3s are strong, I can handle that, and the small dose of Oxy at night is good. But, and here's the but, the Oxys were slow release, the new T3s are a quick hit then it wears off. I decide that even though my final daytime dose of Oxy has worn off, I'm just about to head to physio, so maybe I'll take the new T3s after physio guy has beaten me up and made my legs fall off.
This is when you discover that the pain pills you thought were doing nothing, are actually doing a lot. By the end of physio it was two hours past my "used to take an Oxy" time and I'm running on no pain killers. I had one nasty ache in my back. Not pain, per say, but an ache of significant proportion. It's the first time I've really felt the surgery site. Action required, I gotta get me some of them newfangled fancy Tylenols.
They seem to work. Now, if I could just get rid of the withdrawal headache.
In my conversation with my neurosurgeon this morning I'm told I need to come off the Oxy. Yipes! 40 mg a day isn't that much. But, I agree that I don't want to be on it, so I need a wean-me-off plan because I already get withdrawal symptoms between doses. Solution ... Tylenol 3s during the day, 10mg Oxy at night. I'm not sure what I was thinking, exactly, but apparently he was thinking "as of now".
2pm rolls around, which, in this world of being 90 years old, is pill time, and my little pill cup arrives with only one little, lonely pill in it.
Me - "Hey ... what happened to my extra strength Tylenol? What happened to my Oxy?"
Nurse - "Well, the doctor changed your prescription."
Me - "Okay, we talked about that, but what does that mean, exactly?"
Nurse - "It means T3s every six hours."
Me - "Already?"
Apparently.
I take a moment to ponder. Okay ... T3s are strong, I can handle that, and the small dose of Oxy at night is good. But, and here's the but, the Oxys were slow release, the new T3s are a quick hit then it wears off. I decide that even though my final daytime dose of Oxy has worn off, I'm just about to head to physio, so maybe I'll take the new T3s after physio guy has beaten me up and made my legs fall off.
This is when you discover that the pain pills you thought were doing nothing, are actually doing a lot. By the end of physio it was two hours past my "used to take an Oxy" time and I'm running on no pain killers. I had one nasty ache in my back. Not pain, per say, but an ache of significant proportion. It's the first time I've really felt the surgery site. Action required, I gotta get me some of them newfangled fancy Tylenols.
They seem to work. Now, if I could just get rid of the withdrawal headache.
Thursday 24 May 2012
They're Going to Take My Wheels Away
That's the only problem with progress. You do all this work to improve and to live up to new challenges, then the people in charge start to think you're doing well, slap a green sticked on your walker and take away your wheels.
Y'all have heard ad nauseam about my awful weekend and my crappy mood when I came back Monday morning. The day nurse took the brunt of my mood when he made the mistake of asking "So, did you have a great weekend at home?" He got the tears, the overwhelming-sense-of-loss drama, the I'm-not-going-home-until-I-can-walk proclamation, the my-house-sucks complaining. My neurosurgeon got the same drama the next day, as did physio guy. And then the ward grapevine kicked in and everyone knew I was miserable and that life sucked.
Drama or not, they don't care, and my discharge date is my discharge date no matter what I'm capable of. But at least physio guy took it to heart ... "UP ... we're WALKING today". And he meant it. Ditch the wheels, ditch the walker, ditch the motor control exercises, we're walking. Here's a cane.
Wow .. okay. Maybe I did say that I'm not going home until I can walk with a cane, but I didn't know you meant immediately! Off we went. I say that laughingly, because it was anything but. In reality I didn't trust the leg I can't feel and I felt very physically insecure with so little to hold on to. It took a bit, but after a few turns around the room, I was walking with a cane without physio guy holding on to me. I use the term "walking" loosely. I think a more accurate word is "ambulated".
I cannot begin to describe what it "feels" like to walk on a leg that is giving no sensory feedback to your brain. Rubbery. Bouncy. Strained. Mind of its own. My technique was fair at best, I had no push off with my toe, my knee kept locking and my gait was lopsided, but I was moving and physio guy was pleased. I was a lot frustrated, because if I'm capable of that, why had we not tried that before? I have done so little walking in physio - I did more walking at home with my walker than I had done in the week here. We're doing it now only because I had a hissy-fit.
With that success comes an up side and a down side. Physio guy put a big green sticker on my walker. Green for GO. Green for "she can walk alone". Green for nurses will let me walk on past and not stop me. That's good news. The bad news .. he banned me from my wheels. To be used only for runs to the coffee shop and for excursions outside. I have a couple more days, then they will take away the wheels for the rest of my time here.
And my surgeon took away my Oxy.
A girl just can't have any fun around here.
Y'all have heard ad nauseam about my awful weekend and my crappy mood when I came back Monday morning. The day nurse took the brunt of my mood when he made the mistake of asking "So, did you have a great weekend at home?" He got the tears, the overwhelming-sense-of-loss drama, the I'm-not-going-home-until-I-can-walk proclamation, the my-house-sucks complaining. My neurosurgeon got the same drama the next day, as did physio guy. And then the ward grapevine kicked in and everyone knew I was miserable and that life sucked.
Drama or not, they don't care, and my discharge date is my discharge date no matter what I'm capable of. But at least physio guy took it to heart ... "UP ... we're WALKING today". And he meant it. Ditch the wheels, ditch the walker, ditch the motor control exercises, we're walking. Here's a cane.
Wow .. okay. Maybe I did say that I'm not going home until I can walk with a cane, but I didn't know you meant immediately! Off we went. I say that laughingly, because it was anything but. In reality I didn't trust the leg I can't feel and I felt very physically insecure with so little to hold on to. It took a bit, but after a few turns around the room, I was walking with a cane without physio guy holding on to me. I use the term "walking" loosely. I think a more accurate word is "ambulated".
I cannot begin to describe what it "feels" like to walk on a leg that is giving no sensory feedback to your brain. Rubbery. Bouncy. Strained. Mind of its own. My technique was fair at best, I had no push off with my toe, my knee kept locking and my gait was lopsided, but I was moving and physio guy was pleased. I was a lot frustrated, because if I'm capable of that, why had we not tried that before? I have done so little walking in physio - I did more walking at home with my walker than I had done in the week here. We're doing it now only because I had a hissy-fit.
With that success comes an up side and a down side. Physio guy put a big green sticker on my walker. Green for GO. Green for "she can walk alone". Green for nurses will let me walk on past and not stop me. That's good news. The bad news .. he banned me from my wheels. To be used only for runs to the coffee shop and for excursions outside. I have a couple more days, then they will take away the wheels for the rest of my time here.
And my surgeon took away my Oxy.
A girl just can't have any fun around here.
Extreme and the Shrink
"From what I've seen of you here, you're pretty extreme ... it's either yes or no, on or off ... there isn't much in between".
Wait for it .... there it is .... the knowing laughter from the people who know me. I've preferred to describe that trait as "I'm either doing stuff like crazy or I'm flopped on the couch." Or as "I run because I'm lazy".
The occupational therapist made that character assessment when she was talking to me about my weekend at home (again ... we're still talking about that weekend at home?). We were "discussing" my proclamation that I wasn't going back home until either the house is accessible to me, or I am accessible to the house. In other words, modifications have been made to the house to accommodate my current disabilities, or my disabilities have been overcome to the point where I can function mostly normally in the house.
She was trying to convince me that going home in a week would be just fine, and maybe I just needed an adaptation period and I would get over the feelings of loss and everything would be okay.
Um, NO. Clearly you don't know me. I rearticulated that I had been despondent, had lacked the will to do any self physio, and that sending me back there would just replicate that. I'm not often successful with the "get over it" tactic. Leopards, spots ... you've heard the analogy.
That's when she suggested that maybe talking to a shrink would help ... you know, add mental therapy to the physical therapy.
Wait for it .... there it is ... the laughter from the people who know me. They've been suggesting it for years :)
Wait for it .... there it is .... the knowing laughter from the people who know me. I've preferred to describe that trait as "I'm either doing stuff like crazy or I'm flopped on the couch." Or as "I run because I'm lazy".
The occupational therapist made that character assessment when she was talking to me about my weekend at home (again ... we're still talking about that weekend at home?). We were "discussing" my proclamation that I wasn't going back home until either the house is accessible to me, or I am accessible to the house. In other words, modifications have been made to the house to accommodate my current disabilities, or my disabilities have been overcome to the point where I can function mostly normally in the house.
She was trying to convince me that going home in a week would be just fine, and maybe I just needed an adaptation period and I would get over the feelings of loss and everything would be okay.
Um, NO. Clearly you don't know me. I rearticulated that I had been despondent, had lacked the will to do any self physio, and that sending me back there would just replicate that. I'm not often successful with the "get over it" tactic. Leopards, spots ... you've heard the analogy.
That's when she suggested that maybe talking to a shrink would help ... you know, add mental therapy to the physical therapy.
Wait for it .... there it is ... the laughter from the people who know me. They've been suggesting it for years :)
Wednesday 23 May 2012
My Nurse Hugged Me
Not sure what to say about that, exactly.
Its been obvious to the people around me that I have had a rough couple of days since coming back from my weekend at home. I haven't been the cheerful, friendly, enthusiastic person they are used to seeing. I think "morose" is the word that most closely describes how I've been. My mood certainly caught the attention of the people who interact with me most - my regular three day nurses and physio guy. They weren't quite sure what to do or say.
Except one. The one back in my "Welcome to Rehab" post. I believe the quote is "The admitting nurse and I will not get along. I can tell that from the get-go." Even though I didn't particularly like her when I arrived, over the following days I asked about her job and listened to stories about her personal life. Solely for political reasons (see: it's good to be friendly with the nurses). But somewhere along the line I decided she was ok. I think it was the day I overheard her trying to get important information to a doctor about a patient being discharged the next day. She was frustrated because no one knew what to do. There was no process for that. LOL go figure. THAT's what I think about.
But back to my grumpy mood and everyone not knowing what to do. Everyone except my admitting nurse. She decided that a hug was in order.
Not sure what to do about that, exactly.
Did it give me the creepy-crawlies? A little.
Did it weird me out? I think I was more surprised than anything else.
Was I totally comfortable with it? No, not really.
Did I appreciate her sympathy and support? Yes
What was my instinctive reaction? RUN LIKE HELL !!
Did I let her hug me? yes
Did I hug her back? Hmmmm, not really, but I didn't cringe.
My friends would say that's progress.
But they know not to hug me :)
Its been obvious to the people around me that I have had a rough couple of days since coming back from my weekend at home. I haven't been the cheerful, friendly, enthusiastic person they are used to seeing. I think "morose" is the word that most closely describes how I've been. My mood certainly caught the attention of the people who interact with me most - my regular three day nurses and physio guy. They weren't quite sure what to do or say.
Except one. The one back in my "Welcome to Rehab" post. I believe the quote is "The admitting nurse and I will not get along. I can tell that from the get-go." Even though I didn't particularly like her when I arrived, over the following days I asked about her job and listened to stories about her personal life. Solely for political reasons (see: it's good to be friendly with the nurses). But somewhere along the line I decided she was ok. I think it was the day I overheard her trying to get important information to a doctor about a patient being discharged the next day. She was frustrated because no one knew what to do. There was no process for that. LOL go figure. THAT's what I think about.
But back to my grumpy mood and everyone not knowing what to do. Everyone except my admitting nurse. She decided that a hug was in order.
Not sure what to do about that, exactly.
Did it give me the creepy-crawlies? A little.
Did it weird me out? I think I was more surprised than anything else.
Was I totally comfortable with it? No, not really.
Did I appreciate her sympathy and support? Yes
What was my instinctive reaction? RUN LIKE HELL !!
Did I let her hug me? yes
Did I hug her back? Hmmmm, not really, but I didn't cringe.
My friends would say that's progress.
But they know not to hug me :)
Tuesday 22 May 2012
Words of Wisdom from the Ward
Just a fun, light hearted look at some of the things I've learned in my couple of weeks in the hospital.
A hospital roommate is exactly the same as a university roommate. There is the bookish kind - the quiet, introspective, buried in their headsets or Kindles. There is the social, party kind - the person who talks to anyone and everyone about anything and everything. There is the attached kind - the one whose boyfriend never leaves. The best roommate is the private room.
Hospital modesty is an oxy-moron. Life is much more relaxed if you can be okay with your butt hanging out the back of your gown. Invest in some sexy granny panties or glow in the dark boxers and realize how much better your butt looks than most of the people around you :)
Elimination - the focus is on elimination. Nothing you can do to change that. If you ain't peeing and pooping, they're prodding. Enough said.
Befriend the cleaning staff - they are under-appreciated and often ignored. A few kinds words and some recognition will get you a super clean bathroom, fresh linens whenever you want, and they have the connections to get anything done for you. And they're nice people just trying to make an honest living.
The crazy guy can be very entertaining. As long as he's not your roommate.
Walk that line between "friendly" and "friends" with the nurses. "Friendly" gets you help when you need it, even if they're busy. "Friend" gets you their life story. Unless you have an iPod or are really good at feigning sleep, you are a captive audience. Their life story is interesting the first time around, but it gets old. Fast.
Get yourself a dealer. Everyone needs a dealer (or dealers) who will smuggle in food and snacks because hospital food sucks. If you are learning how to walk, smuggled booze is not recommended.
Headphones/earplugs are golden. Loud talkers are not.
Hospital staff are like people everywhere. There are the stupid ones, the lazy ones, the ignorant ones, the angry ones, the bitter ones, the hard working ones, the nice ones, and the superstars. Pray that you may be blessed with few of the stupid kind. Especially if there is poking, prodding or staple removal required
Your friends and family are quiet, polite and respectful. Everyone else's are not.
If you are classic Type A ... manage your own healthcare. They may think you are nuts when you write down every test result, every drug you take, and all your elimination successes, and keep them in an excel spreadsheet. But they're busy, and while they have processes to avoid forgetting ... it happens. If you're Type B, then just go with the flow and you'll probably recover faster than us neurotic Type A's :)
Always lock your wheelchair before you try to get in it. If you think your friends are bad for pulling a chair out from under you when you sit down, you should see a wheelchair pull that party trick. Lots of blood, pissed off nurses and the cleaning staff will hate you (See note above re: befriending the cleaning staff).
Get a hobby. You can only get so much sleep, meals, exercise and time spent doing daily necessities. The rest of the day in the hospital will kill you with boredom. Valid hobbies do not include recording your neighbour when she's being an idiot, going all Dr House around the hospital, pressing random call buttons or drag racing wheelchairs. Those will get you kicked out.
Nurses come in both genders and cross-gender nursing is the new normal. You get who you get on shift that day. Accept it up until your level of comfort for the procedure being done. If you aren't comfortable, say so and usually they can work around it (see note: re "friendly" with the nurses). If it's shower time, let their hotness be your guide :)
And as crazy as things are, at least you're not on the wacky ward.
A hospital roommate is exactly the same as a university roommate. There is the bookish kind - the quiet, introspective, buried in their headsets or Kindles. There is the social, party kind - the person who talks to anyone and everyone about anything and everything. There is the attached kind - the one whose boyfriend never leaves. The best roommate is the private room.
Hospital modesty is an oxy-moron. Life is much more relaxed if you can be okay with your butt hanging out the back of your gown. Invest in some sexy granny panties or glow in the dark boxers and realize how much better your butt looks than most of the people around you :)
Elimination - the focus is on elimination. Nothing you can do to change that. If you ain't peeing and pooping, they're prodding. Enough said.
Befriend the cleaning staff - they are under-appreciated and often ignored. A few kinds words and some recognition will get you a super clean bathroom, fresh linens whenever you want, and they have the connections to get anything done for you. And they're nice people just trying to make an honest living.
The crazy guy can be very entertaining. As long as he's not your roommate.
Walk that line between "friendly" and "friends" with the nurses. "Friendly" gets you help when you need it, even if they're busy. "Friend" gets you their life story. Unless you have an iPod or are really good at feigning sleep, you are a captive audience. Their life story is interesting the first time around, but it gets old. Fast.
Get yourself a dealer. Everyone needs a dealer (or dealers) who will smuggle in food and snacks because hospital food sucks. If you are learning how to walk, smuggled booze is not recommended.
Headphones/earplugs are golden. Loud talkers are not.
Hospital staff are like people everywhere. There are the stupid ones, the lazy ones, the ignorant ones, the angry ones, the bitter ones, the hard working ones, the nice ones, and the superstars. Pray that you may be blessed with few of the stupid kind. Especially if there is poking, prodding or staple removal required
Your friends and family are quiet, polite and respectful. Everyone else's are not.
If you are classic Type A ... manage your own healthcare. They may think you are nuts when you write down every test result, every drug you take, and all your elimination successes, and keep them in an excel spreadsheet. But they're busy, and while they have processes to avoid forgetting ... it happens. If you're Type B, then just go with the flow and you'll probably recover faster than us neurotic Type A's :)
Always lock your wheelchair before you try to get in it. If you think your friends are bad for pulling a chair out from under you when you sit down, you should see a wheelchair pull that party trick. Lots of blood, pissed off nurses and the cleaning staff will hate you (See note above re: befriending the cleaning staff).
Get a hobby. You can only get so much sleep, meals, exercise and time spent doing daily necessities. The rest of the day in the hospital will kill you with boredom. Valid hobbies do not include recording your neighbour when she's being an idiot, going all Dr House around the hospital, pressing random call buttons or drag racing wheelchairs. Those will get you kicked out.
Nurses come in both genders and cross-gender nursing is the new normal. You get who you get on shift that day. Accept it up until your level of comfort for the procedure being done. If you aren't comfortable, say so and usually they can work around it (see note: re "friendly" with the nurses). If it's shower time, let their hotness be your guide :)
And as crazy as things are, at least you're not on the wacky ward.
Monday 21 May 2012
The Lunatic is Back in the Asylum
Being home was a huge step in the wrong direction.
I got the hell out of dodge as soon as I could this morning ... escaped the confines of home and got back to the rehab unit where I have mobility and freedom. A world bigger than my living room and bedroom. A bigger world may not necessarily equal more freedom, but it certainly feels that way.
I had hoped that being back in the hospital would snap me out of my despondency, but that didn't happen. The nurse started to ask me about my weekend at home, and that pretty much opened the floodgates. I have since calmed, and as each hour passes, my happy factor increases bit by bit. Only time will tell whether the hit to my motivation and positive attitude is short lived or continues on.
It was a gorgeous day outside and I'm somewhat resentful that in my old life I would have been parked in the backyard with a beer, enjoying the sun and warmth. On the other hand, I would have been looking at my backyard thinking about how much work it needs and how I don't have the money to hire someone to do it. Maybe next year. Instead I settled for a coffee in the courtyard. It must have been a big visitor day because all the benches were full, but one advantage to a wheelchair? I can sit anywhere :) So I found myself a shady spot until I couldn't stand the heat any more and came in.
I had a couple of nurses come and park themselves in my room to chat. Not sure if they were on a cheer me up mission or if they were just bored, but you can tell they have a lot of experience talking to sad people. It helped my mood a little bit.
I didn't miss the hospital food while I was home. The barbeque was a wonderful invention, and in combination with summer weather, usually means steak or ribs. Not back in rehab. Plastic macaroni and cheese for lunch and mystery meat with shredded carrots and fake mashed potatos with something resembling gravy for dinner. Ugh.
The usual vitals check (um ... you didn't do that to me for two days while I was home ... is it really necessary?) and the comfortable routine of the hospital. Tomorrow, it's back to the work of rehab. Thankfully.
I got the hell out of dodge as soon as I could this morning ... escaped the confines of home and got back to the rehab unit where I have mobility and freedom. A world bigger than my living room and bedroom. A bigger world may not necessarily equal more freedom, but it certainly feels that way.
I had hoped that being back in the hospital would snap me out of my despondency, but that didn't happen. The nurse started to ask me about my weekend at home, and that pretty much opened the floodgates. I have since calmed, and as each hour passes, my happy factor increases bit by bit. Only time will tell whether the hit to my motivation and positive attitude is short lived or continues on.
It was a gorgeous day outside and I'm somewhat resentful that in my old life I would have been parked in the backyard with a beer, enjoying the sun and warmth. On the other hand, I would have been looking at my backyard thinking about how much work it needs and how I don't have the money to hire someone to do it. Maybe next year. Instead I settled for a coffee in the courtyard. It must have been a big visitor day because all the benches were full, but one advantage to a wheelchair? I can sit anywhere :) So I found myself a shady spot until I couldn't stand the heat any more and came in.
I had a couple of nurses come and park themselves in my room to chat. Not sure if they were on a cheer me up mission or if they were just bored, but you can tell they have a lot of experience talking to sad people. It helped my mood a little bit.
I didn't miss the hospital food while I was home. The barbeque was a wonderful invention, and in combination with summer weather, usually means steak or ribs. Not back in rehab. Plastic macaroni and cheese for lunch and mystery meat with shredded carrots and fake mashed potatos with something resembling gravy for dinner. Ugh.
The usual vitals check (um ... you didn't do that to me for two days while I was home ... is it really necessary?) and the comfortable routine of the hospital. Tomorrow, it's back to the work of rehab. Thankfully.
Sunday 20 May 2012
Bath, Bed and a Bad Day - Home Visit Day 2
My bed may not be Craftmatic-on-steroids like the hospital bed, but it is certainly more comfortable. Softer, cushier, bigger and more familiar - I will confess to sleeping well. And I am glad I bothered to wash all the linens before I left so that everything was clean and fabric softener fresh for me. Ahhhh.
But a comfy, familiar bed did not stop the predictable emotional reaction to being back in the old world. The sadness, the overwhelming feeling of loss, the "I'm tired of the hard work", the confirmation that this house is designed for the able bodied. Having to find my way into a bathroom where the door is too narrow for both the walker and the wheelchair. The slap-me-in-the-face realization of how little independence I have here. I'm trapped. I can't go outside without help. I'm not supposed to use my walker without help because I'm a fall risk. I can't drive. I can't walk. I can't cook. My world here is my living room and my bedroom. It's awful. It's depressing. I'm not happy here. I have no morale to do the self rehab. My fears of coming home this weekend were not unfounded.
Unless there is a miracle of progress, I'm not ready to come home in 10 days.
Someone suggested to me that I push the medical system to move me to a rehab place that specializes in spinal injury. At the time I scoffed at the suggestion ... no, I'll be fine ... I will have made enough progress. I have the perfect attitude to do the work on my own. Yeah. Wrong. That will be my first discussion with the neurosurgeon and the rehab team when I get back.
My SO is cheerfully willing to help me in any way he can while we're here - I just have to ask. He is trying hard to cheer me up, to make it a happy weekend. We've had visitors, who have been happy to see me and tell me that I've made huge progress. Who remind me that is has only been 18 days since surgery and that nerves take months to heal. Everyone is in my corner ... I just need to get there too.
For now I will stick out the rest of the weekend ... exercise the discipline to work through my initial reaction to see if it is just reaction or if being home is a huge step in the wrong direction.
But a comfy, familiar bed did not stop the predictable emotional reaction to being back in the old world. The sadness, the overwhelming feeling of loss, the "I'm tired of the hard work", the confirmation that this house is designed for the able bodied. Having to find my way into a bathroom where the door is too narrow for both the walker and the wheelchair. The slap-me-in-the-face realization of how little independence I have here. I'm trapped. I can't go outside without help. I'm not supposed to use my walker without help because I'm a fall risk. I can't drive. I can't walk. I can't cook. My world here is my living room and my bedroom. It's awful. It's depressing. I'm not happy here. I have no morale to do the self rehab. My fears of coming home this weekend were not unfounded.
Unless there is a miracle of progress, I'm not ready to come home in 10 days.
Someone suggested to me that I push the medical system to move me to a rehab place that specializes in spinal injury. At the time I scoffed at the suggestion ... no, I'll be fine ... I will have made enough progress. I have the perfect attitude to do the work on my own. Yeah. Wrong. That will be my first discussion with the neurosurgeon and the rehab team when I get back.
My SO is cheerfully willing to help me in any way he can while we're here - I just have to ask. He is trying hard to cheer me up, to make it a happy weekend. We've had visitors, who have been happy to see me and tell me that I've made huge progress. Who remind me that is has only been 18 days since surgery and that nerves take months to heal. Everyone is in my corner ... I just need to get there too.
For now I will stick out the rest of the weekend ... exercise the discipline to work through my initial reaction to see if it is just reaction or if being home is a huge step in the wrong direction.
Saturday 19 May 2012
The Home Visit - Day 1
SO and I managed to avoid killing each other. Mostly because he "got me settled" and then left to do some errands before I could take his head off (and he, mine).
I made it up the 5 front steps to the house no problem, with his help. Easy. Not that I could do it alone, but with his help it was easy. Inside, not so easy. I never realized how narrow things are in my house - the main hallway to the bedrooms is fine, but the wheelchair will not fit through any of the bedroom doors or the bathroom door. Hmmm. Walker time, except I've never been allowed to use the walker alone, with good reason. But, this is a pretty safe environment (aside from the tub, the toilet, the countertop and the ceramic floors ... maybe not a safe place to fall). But I manoever around with the walker and do what I need to do. Goal A accomplished - pee. LOL ... it's amazing, I never used to give a second thought to using the toilet ... but become disabled and the smallest of things becomes an accomplishment.
Goal B - get settled in the livingroom. The coffee table presented a problem. It's too big and takes up a lot of room. No problem when you're able bodied, but if you're trying to swing a wheelchair around, it becomes problematic. SO's solution was dramatic - he started moving furniture all over the place, pushing this here and that there. Aaarrgh ... STOP !! I know he's concerned and trying to be helpful, but please don't take over. He even stopped me from opening the curtains and finished it himself. Okay, ... get out. Go shopping. Surely there is something you need to be doing right now. I need to feel in control of my environment, and you need to relax.
I have found "my spot" ... a comfy chair facing the tv, close the outlets so my laptop and phone can charge and where I am comfortable and can easily manouever around. But it will be an interesting weekend. The challenges are greater and I'm not strong enough to be independent here.
Loss of independence is a bad thing for me.
I made it up the 5 front steps to the house no problem, with his help. Easy. Not that I could do it alone, but with his help it was easy. Inside, not so easy. I never realized how narrow things are in my house - the main hallway to the bedrooms is fine, but the wheelchair will not fit through any of the bedroom doors or the bathroom door. Hmmm. Walker time, except I've never been allowed to use the walker alone, with good reason. But, this is a pretty safe environment (aside from the tub, the toilet, the countertop and the ceramic floors ... maybe not a safe place to fall). But I manoever around with the walker and do what I need to do. Goal A accomplished - pee. LOL ... it's amazing, I never used to give a second thought to using the toilet ... but become disabled and the smallest of things becomes an accomplishment.
Goal B - get settled in the livingroom. The coffee table presented a problem. It's too big and takes up a lot of room. No problem when you're able bodied, but if you're trying to swing a wheelchair around, it becomes problematic. SO's solution was dramatic - he started moving furniture all over the place, pushing this here and that there. Aaarrgh ... STOP !! I know he's concerned and trying to be helpful, but please don't take over. He even stopped me from opening the curtains and finished it himself. Okay, ... get out. Go shopping. Surely there is something you need to be doing right now. I need to feel in control of my environment, and you need to relax.
I have found "my spot" ... a comfy chair facing the tv, close the outlets so my laptop and phone can charge and where I am comfortable and can easily manouever around. But it will be an interesting weekend. The challenges are greater and I'm not strong enough to be independent here.
Loss of independence is a bad thing for me.
Friday 18 May 2012
Home on a Weekend Pass
When my SO asked if there was such a thing as a weekend pass, my instinctive reaction was "NO". But I told him I'd ask. It turns out there IS such a thing.
I was interested in my reaction ... Why did I not want there to be weekend passes? Why did I not want to take advantage of it? I'm in a hospital, isn't it everyone's goal to get out? Reflection revealed fear. Interesting.
The environment in the rehab ward of a hospital is very secure. Very safe. Very familiar in a now unfamiliar world. There are nurses, doctors, physiotherapists, experts ... all available all the time. The facilities are geared to the disabled - smooth floors, no stairs, floor level showers, support bars everywhere, craftmatic-on-steriods beds, tray tables, wheelchairs, walkers, rehab gym. Everything needed in the new-Sarah world.
Home is the old-Sarah world. Only able-bodied people need apply. The world where I stood, where I walked, where I ran up and down the stairs. The world where I never gave a second thought about being able to do anything.
I'm afraid of new meets old. I'm afraid of facing my old world and missing it desperately. I'm afraid of being hit hard with the reality that I'm disabled and will start to think maybe it's permanent. I'm afraid of losing my positive attitude. I'm afraid I will feel discouraged and defeated when I come back on Monday.
Everyone says it must be exciting to be going home for the weekend. No. It's not. I'd rather stay here where I'm safe and secure and know how to get by.
But this will be like all fears - the reality is never as bad as you anticipate. It is also part of the mental game they play here - the experts know full well that people don't like to leave their comfort zone, but that eventually they will be going home. It is better to test out the waters in small doses over day passes and weekends, than it is to be thrown cold turkey back into your home environment. It is all part of the rehab process.
Going home is terrifying, but it needs to be done. And there's a steak waiting to be barbequed for me.
I was interested in my reaction ... Why did I not want there to be weekend passes? Why did I not want to take advantage of it? I'm in a hospital, isn't it everyone's goal to get out? Reflection revealed fear. Interesting.
The environment in the rehab ward of a hospital is very secure. Very safe. Very familiar in a now unfamiliar world. There are nurses, doctors, physiotherapists, experts ... all available all the time. The facilities are geared to the disabled - smooth floors, no stairs, floor level showers, support bars everywhere, craftmatic-on-steriods beds, tray tables, wheelchairs, walkers, rehab gym. Everything needed in the new-Sarah world.
Home is the old-Sarah world. Only able-bodied people need apply. The world where I stood, where I walked, where I ran up and down the stairs. The world where I never gave a second thought about being able to do anything.
I'm afraid of new meets old. I'm afraid of facing my old world and missing it desperately. I'm afraid of being hit hard with the reality that I'm disabled and will start to think maybe it's permanent. I'm afraid of losing my positive attitude. I'm afraid I will feel discouraged and defeated when I come back on Monday.
Everyone says it must be exciting to be going home for the weekend. No. It's not. I'd rather stay here where I'm safe and secure and know how to get by.
But this will be like all fears - the reality is never as bad as you anticipate. It is also part of the mental game they play here - the experts know full well that people don't like to leave their comfort zone, but that eventually they will be going home. It is better to test out the waters in small doses over day passes and weekends, than it is to be thrown cold turkey back into your home environment. It is all part of the rehab process.
Going home is terrifying, but it needs to be done. And there's a steak waiting to be barbequed for me.
Weebles Wobble but They Don't Fall Down
I can stand. By myself. No hands.
There has been some teeny, itsy-bitsy neurological progress and I can now sense the floor under the ball of my right foot. That wee bit of sensation gives me enough sensory feedback that I have the ability to stand and to be aware that I'm standing on two things, not just one. It's a strange, floaty feeling - indescribable as there is nothing I can compare it to. I stand, and my brain registers that all is normal with my left leg and a strange presence on the right side of my body. Not sure what it is, exactly, but there's something there trying to help.
Just don't ask me to do anything while I'm standing, or to stand for very long.
Exercise guy ignored that request and today was all about posture. By myself. No hands. Stand on two feet, hips forward, back straight, looking straight ahead. And hold. And hold. And hold. And whoa !!! sway and grab. The result is quite hilarious - next time I have to find someone to catch it on video. Back to correct posture, lean this way, shift weight that way, move foot into alignment, back straight, hold, hold, hold, hold. 5 minutes of standing and I was toast.
Then exercise guy makes me move from sitting to standing without help. Okay body, move! I sway, I waver, I claw his shoulder, he digs his fingers into my thigh to keep me upright. But I'm standing again. And swaying ... I need to join a gospel choir - I'd be awesome! We do it again ... and again. An intense exercise in body focus.
I'm pretty sure during this standing process I look like a marionette being played by someone who doesn't know what they're doing.
Thankfully he tires of making me stand up and I get on the stationary bike for the first time. Ahhh ... my body understands this action, and I feel strong and comfortable on the bike. He asks me to do seven minutes, and for the first time I think "piece of cake". And it was a piece of cake - if you excuse my cycling form. My legs have intense muscle memory for cycling and I fell naturally into the rhythm. While I tried to focus on technique, my right knee was determined to do it's own thing most of the time. It wiggled this way, it wobbled that way, but the leg contributed to the cycling motion and I felt strong.
A good session, another good day, and another baby step.
There has been some teeny, itsy-bitsy neurological progress and I can now sense the floor under the ball of my right foot. That wee bit of sensation gives me enough sensory feedback that I have the ability to stand and to be aware that I'm standing on two things, not just one. It's a strange, floaty feeling - indescribable as there is nothing I can compare it to. I stand, and my brain registers that all is normal with my left leg and a strange presence on the right side of my body. Not sure what it is, exactly, but there's something there trying to help.
Just don't ask me to do anything while I'm standing, or to stand for very long.
Exercise guy ignored that request and today was all about posture. By myself. No hands. Stand on two feet, hips forward, back straight, looking straight ahead. And hold. And hold. And hold. And whoa !!! sway and grab. The result is quite hilarious - next time I have to find someone to catch it on video. Back to correct posture, lean this way, shift weight that way, move foot into alignment, back straight, hold, hold, hold, hold. 5 minutes of standing and I was toast.
Then exercise guy makes me move from sitting to standing without help. Okay body, move! I sway, I waver, I claw his shoulder, he digs his fingers into my thigh to keep me upright. But I'm standing again. And swaying ... I need to join a gospel choir - I'd be awesome! We do it again ... and again. An intense exercise in body focus.
I'm pretty sure during this standing process I look like a marionette being played by someone who doesn't know what they're doing.
Thankfully he tires of making me stand up and I get on the stationary bike for the first time. Ahhh ... my body understands this action, and I feel strong and comfortable on the bike. He asks me to do seven minutes, and for the first time I think "piece of cake". And it was a piece of cake - if you excuse my cycling form. My legs have intense muscle memory for cycling and I fell naturally into the rhythm. While I tried to focus on technique, my right knee was determined to do it's own thing most of the time. It wiggled this way, it wobbled that way, but the leg contributed to the cycling motion and I felt strong.
A good session, another good day, and another baby step.
Thursday 17 May 2012
The Day I Slept Away
I wasted today.
Not on purpose and I'm quite irritated that I didn't get to do any physio. But it was such a weird day.
I woke up, as usual, around 5:30am and had the back and forth with the night nurse about putting plastic on my wounds so I could shower. They can never figure out if they should be protecting it from water (there's only steri-strips on it now), or not, or whether it is the night nurse that will do it, or I have to wait for the day nurse, blah, blah, blah. Who knew it was such a production - if I could reach my back, I would do it myself. Anyway, final decision was that protective covering is no longer required.
Excellent. On my way. I had a mild headache and asked for the Tylenol early.
Shower accomplished means one thing, coffee run! While wheeling my way to the coffee shop, I wasn't feeling quite 100% .. something a little weird with my head (ha ha, I know, I know), my stomach a little off. Maybe it would be a good day to scale it back and just work hard at physio and otherwise just laze around.
9:30am .. headache kicks in, full force. I'm not a headache person - I don't really get them and when I do they usually aren't strong enough to incapacitate me. But Holy Wow ... this was as doozy - even with the painkillers I'm regularly taking. Sitting up was next to impossible because it brought on the nausea. Peeing was an adventure - how to get to the bathroom and back fast enough that I didn't a) pass out or b) puke. I slept, and slept, and slept. And ignored my lunch food tray (you know something's wrong when I ignore food). Woke up briefly for painkillers which did nothing for the heachache, and more sleep. Gravol and more sleep.
My apologies to my father and uncle who stopped by to visit - I was improving but still practically incoherent. I was also absolutely and totally incapable of either physio session today, which was really disappointing. Right now every day matters, and we're heading into a long weekend where I won't get physio for three days. Aaarrgh !
I'm usually the one out and about, I'm rarely in my room, or if I am, I'm sitting in a chair by the window doing something. But today I was enough of a changed person that even the nurses were concerned and had the on-call doctor stop by. She said virus, I said withdrawal from the Decadron.
I read that it is possible to have withdrawal even after a tapered session, and classic symptoms are headache and nausea. I have absolutely no credibility to say it was withdrawal, no scientific evidence nor am I a doctor or a pharmacist. I just have a very low tolerance for drugs and they affect me immediately and strongly. I am totally unqualified to make that statement.
I just know me. And Dr. Google.
But as I head off to sleep, the headache is 90% gone, and tomorrow should be a new day.
Not on purpose and I'm quite irritated that I didn't get to do any physio. But it was such a weird day.
I woke up, as usual, around 5:30am and had the back and forth with the night nurse about putting plastic on my wounds so I could shower. They can never figure out if they should be protecting it from water (there's only steri-strips on it now), or not, or whether it is the night nurse that will do it, or I have to wait for the day nurse, blah, blah, blah. Who knew it was such a production - if I could reach my back, I would do it myself. Anyway, final decision was that protective covering is no longer required.
Excellent. On my way. I had a mild headache and asked for the Tylenol early.
Shower accomplished means one thing, coffee run! While wheeling my way to the coffee shop, I wasn't feeling quite 100% .. something a little weird with my head (ha ha, I know, I know), my stomach a little off. Maybe it would be a good day to scale it back and just work hard at physio and otherwise just laze around.
9:30am .. headache kicks in, full force. I'm not a headache person - I don't really get them and when I do they usually aren't strong enough to incapacitate me. But Holy Wow ... this was as doozy - even with the painkillers I'm regularly taking. Sitting up was next to impossible because it brought on the nausea. Peeing was an adventure - how to get to the bathroom and back fast enough that I didn't a) pass out or b) puke. I slept, and slept, and slept. And ignored my lunch food tray (you know something's wrong when I ignore food). Woke up briefly for painkillers which did nothing for the heachache, and more sleep. Gravol and more sleep.
My apologies to my father and uncle who stopped by to visit - I was improving but still practically incoherent. I was also absolutely and totally incapable of either physio session today, which was really disappointing. Right now every day matters, and we're heading into a long weekend where I won't get physio for three days. Aaarrgh !
I'm usually the one out and about, I'm rarely in my room, or if I am, I'm sitting in a chair by the window doing something. But today I was enough of a changed person that even the nurses were concerned and had the on-call doctor stop by. She said virus, I said withdrawal from the Decadron.
I read that it is possible to have withdrawal even after a tapered session, and classic symptoms are headache and nausea. I have absolutely no credibility to say it was withdrawal, no scientific evidence nor am I a doctor or a pharmacist. I just have a very low tolerance for drugs and they affect me immediately and strongly. I am totally unqualified to make that statement.
I just know me. And Dr. Google.
But as I head off to sleep, the headache is 90% gone, and tomorrow should be a new day.
Wednesday 16 May 2012
You Need to Buy A Wheelchair
"Next week we need to get going on the paperwork for your wheelchair"
I like to think I didn't have a dumbass look on my face, but I'm pretty sure I did. Let me pause a moment while my brain processes that statement. "your wheelchair". Sounds like we're not talking about a temporary loaner, but a full-fledged "Sarah needs to buy a wheelchair" wheelchair. Many thoughts run through my head:
"I thought you were confident I would walk again"
"I'm not going back to work until I can go without a wheelchair"
"What about a walker?"
"I can't be in a wheelchair, this is all about Sarah walking again"
None of the thoughts are confident, happy, cheerful thoughts. They are panic thoughts.
Zen ... go Zen ... do not leap to conclusions. Breathe deeply. In. Out. In. Out. Okay ... let's talk about this.
He tells me that there are subsidies available for those who are disabled and are in need of a wheelchair or walker. The government will cover 75% of the cost of all qualifying mobility aids if you a) need it every day b) have to use it either inside or outside the home and c) need it for a minimum of six months. With wheelchairs costing upwards of $4,000 - $5,000, that subsidy is valuable.
Physio guy's logic for buying a wheelchair now:
I think I can get my head around that.
It will be the beemer of wheelchairs. With cupholders.
I like to think I didn't have a dumbass look on my face, but I'm pretty sure I did. Let me pause a moment while my brain processes that statement. "your wheelchair". Sounds like we're not talking about a temporary loaner, but a full-fledged "Sarah needs to buy a wheelchair" wheelchair. Many thoughts run through my head:
"I thought you were confident I would walk again"
"I'm not going back to work until I can go without a wheelchair"
"What about a walker?"
"I can't be in a wheelchair, this is all about Sarah walking again"
None of the thoughts are confident, happy, cheerful thoughts. They are panic thoughts.
Zen ... go Zen ... do not leap to conclusions. Breathe deeply. In. Out. In. Out. Okay ... let's talk about this.
He tells me that there are subsidies available for those who are disabled and are in need of a wheelchair or walker. The government will cover 75% of the cost of all qualifying mobility aids if you a) need it every day b) have to use it either inside or outside the home and c) need it for a minimum of six months. With wheelchairs costing upwards of $4,000 - $5,000, that subsidy is valuable.
Physio guy's logic for buying a wheelchair now:
- I will definately use it every day for the next several months as my walking progresses
- Even if I can walk with a walker, there are benefits to having a wheelchair for longer excursions (and airports!)
- I will likely be sent back to work before I can handle the commute on my feet - the wheelchair would be required for commuting
- It's better for my body to own a wheelchair that has been custom fitted for me than to rent something crappy, even if I don't use it often down the road
- If I apply now, the team will definately sign off on the six month every day use minimum ... if I wait for three or four months, they may not be able to say that I need it for every day use.
- Odds are good that my right leg will always be my weakest link and the wheelchair is good to have
I think I can get my head around that.
It will be the beemer of wheelchairs. With cupholders.
Catch 22
"We will be sending you home in two weeks".
HUH? !! I can't even feel my right leg yet and we're talking about sending me home?
That is terrifying. When your world has been tossed around like mine has, there is comfort and security in institutionalized rehab. There's a team. There are nurses. There are support staff who look after everything from cleaning your room to providing your meals. If you fall, there is someone to pick you up, if you regress there is a team to pull you back. You are wapped up in the safety of an environment where all you have to do is focus on your program. Leaving soon is not an exciting proposition (unless you take my suite-mate into consideration, but I may just have to do an entire post about her).
But our medical system is interesting.
The demographic of the patients in this rehab unit is 70-80 year old stroke and/or cardiac patients who have lost function, but are also frail, have other health issues and are sometimes a little batty. For their rehabilitation, there is an established process. They tell me that there has been so much research done on stroke rehab that, for the most part, it is a cookie cutter program. Do A, then B, then C, then off you go. While many of these stroke and cardiac patients benefit somewhat from the rehab, the biggest reason they are kept for several weeks is because of their frailty - they require nursing care. Management can't discharge someone who can't function at home. Yawn for the physio people.
Then there's me. The youngest by 25 years, I had funky spinal surgery and have an unusual combination of nerves that were damaged. I am, apparently, fascinating. (Their words, not mine, but I presume they are talking about my condition, not me personally :) The physio team is having to create new strategies, brainstorm with their peers for ideas, try new things and be inventive with the rehab program. I would imagine, a challenge that doesn't come their way very often. So they are advocating for me to stay as long as possible. Exciting for the physio people.
I can't walk alone (yet) because my balance and spatial awareness are zapped. But I'm otherwise fit, strong and healthy. I'm independent. I'm determined. I'm a wee tad crazy. I'm the type that would do well at home.
I am the kind of person who would benefit most from extended, intensive rehab. But I'm too fit to keep. Others are unlikely to regain function, but are too frail to send home.
Catch 22
HUH? !! I can't even feel my right leg yet and we're talking about sending me home?
That is terrifying. When your world has been tossed around like mine has, there is comfort and security in institutionalized rehab. There's a team. There are nurses. There are support staff who look after everything from cleaning your room to providing your meals. If you fall, there is someone to pick you up, if you regress there is a team to pull you back. You are wapped up in the safety of an environment where all you have to do is focus on your program. Leaving soon is not an exciting proposition (unless you take my suite-mate into consideration, but I may just have to do an entire post about her).
But our medical system is interesting.
The demographic of the patients in this rehab unit is 70-80 year old stroke and/or cardiac patients who have lost function, but are also frail, have other health issues and are sometimes a little batty. For their rehabilitation, there is an established process. They tell me that there has been so much research done on stroke rehab that, for the most part, it is a cookie cutter program. Do A, then B, then C, then off you go. While many of these stroke and cardiac patients benefit somewhat from the rehab, the biggest reason they are kept for several weeks is because of their frailty - they require nursing care. Management can't discharge someone who can't function at home. Yawn for the physio people.
Then there's me. The youngest by 25 years, I had funky spinal surgery and have an unusual combination of nerves that were damaged. I am, apparently, fascinating. (Their words, not mine, but I presume they are talking about my condition, not me personally :) The physio team is having to create new strategies, brainstorm with their peers for ideas, try new things and be inventive with the rehab program. I would imagine, a challenge that doesn't come their way very often. So they are advocating for me to stay as long as possible. Exciting for the physio people.
I can't walk alone (yet) because my balance and spatial awareness are zapped. But I'm otherwise fit, strong and healthy. I'm independent. I'm determined. I'm a wee tad crazy. I'm the type that would do well at home.
I am the kind of person who would benefit most from extended, intensive rehab. But I'm too fit to keep. Others are unlikely to regain function, but are too frail to send home.
Catch 22
Tuesday 15 May 2012
My Drug Habit
I am not necessarily anti-drug. Modern chemistry has done wonders for our ability to cure illness and manage pain, and has saved hundreds of thousands of lives. There are lots of legitimate drugs being taken for legitimate reasons, but sometimes our first world society goes a little over the top. Have a head ache? Take an Advil. Have a sniffle? Take cold and sinus medication. Don't want to change your lifestyle? Here's a drug.
But I do draw the line (for myself) at the addictive ones. I'm not comfortable with it at all, so I started to track what I was being given, when and why. I will grant that my pain management has been excellent, and all my pre-surgery fears of waking up with searing back pain were totally unfounded. Points for the professionals here. But what am I taking?
300mg Gabapentin (AKA Neurontin) three times a day - used for the treatment of neuropathic pain. Given that my surgery did some serious messing with my nerves, I'm thinking it's okay. Followed by some googling on what this drug is, and what it is for, made me comfortable enough taking it. (As an aside: this is the drug that made headlines when Pfizer was successfully sued for illegal marketing of off label uses of it.)
2 x 650mg Tylenol four times a day. This prescription is considered extended release. Dr Google tells me that eight of these tablets a day is high, but that the 2500mg that I'm getting daily is well below the 4000mg max recommended by Tylenol. Their website doesn't get into many details about their prescription products, but they seem consistent about 4000mg as a maximum across their products.
0.75mg Dexamethasone (AKA Decadron) - a steroid used to counteract the swelling process, in my case where the tumor was interfering with the spinal cord. It's one of those drugs where they hit you hard right after surgery then spend four to seven days weaning you off it. To be honest, I have no idea how much I was given immediately after surgery, but since I've been tracking, they've given me four per day for two days, then three per day for one day, and it's been two per day for the last couple of days. Im good with the taper - Dr Google says withdrawal causes nausea, vomiting and confusion. My friends would say I'm crazy at the best of times, so there's no need to add to the fun :)
Then there's the Oxycodone Extended Release. Brand name Oxycontin. The famous Oxy. Making headlines recently for its use and abuse in our society. If I'm not a big fan of drugs, I'm REALLY not a big fan of addictive drugs. Oxy Extended Release - one pill, every eight hours. I can choose between the10mg strength or the 20mg strength, depending on how I am feeling at the time. I immediately went for the 10mg during the day and the 20mg at night, and I'm now down to only 10mg. I was also prescribed Oxy IR (Immediate Release) ... 10mg pills that I could take on demand or every two hours. I had myself off the quick release in two days, but I'm still on the hard stuff, and it scares the crap out of me.
Most of that fear is because I don't know anything about prescription drugs beyond what I see on Intervention - not really the best source of information - so I asked the nurse about the seriousness of my dosing.
He did, eventually, stop laughing.
I guess it's safe to say that I'm in little danger of walking out of here a prescription drug addicted junkie.
But I do draw the line (for myself) at the addictive ones. I'm not comfortable with it at all, so I started to track what I was being given, when and why. I will grant that my pain management has been excellent, and all my pre-surgery fears of waking up with searing back pain were totally unfounded. Points for the professionals here. But what am I taking?
300mg Gabapentin (AKA Neurontin) three times a day - used for the treatment of neuropathic pain. Given that my surgery did some serious messing with my nerves, I'm thinking it's okay. Followed by some googling on what this drug is, and what it is for, made me comfortable enough taking it. (As an aside: this is the drug that made headlines when Pfizer was successfully sued for illegal marketing of off label uses of it.)
2 x 650mg Tylenol four times a day. This prescription is considered extended release. Dr Google tells me that eight of these tablets a day is high, but that the 2500mg that I'm getting daily is well below the 4000mg max recommended by Tylenol. Their website doesn't get into many details about their prescription products, but they seem consistent about 4000mg as a maximum across their products.
0.75mg Dexamethasone (AKA Decadron) - a steroid used to counteract the swelling process, in my case where the tumor was interfering with the spinal cord. It's one of those drugs where they hit you hard right after surgery then spend four to seven days weaning you off it. To be honest, I have no idea how much I was given immediately after surgery, but since I've been tracking, they've given me four per day for two days, then three per day for one day, and it's been two per day for the last couple of days. Im good with the taper - Dr Google says withdrawal causes nausea, vomiting and confusion. My friends would say I'm crazy at the best of times, so there's no need to add to the fun :)
Then there's the Oxycodone Extended Release. Brand name Oxycontin. The famous Oxy. Making headlines recently for its use and abuse in our society. If I'm not a big fan of drugs, I'm REALLY not a big fan of addictive drugs. Oxy Extended Release - one pill, every eight hours. I can choose between the10mg strength or the 20mg strength, depending on how I am feeling at the time. I immediately went for the 10mg during the day and the 20mg at night, and I'm now down to only 10mg. I was also prescribed Oxy IR (Immediate Release) ... 10mg pills that I could take on demand or every two hours. I had myself off the quick release in two days, but I'm still on the hard stuff, and it scares the crap out of me.
Most of that fear is because I don't know anything about prescription drugs beyond what I see on Intervention - not really the best source of information - so I asked the nurse about the seriousness of my dosing.
He did, eventually, stop laughing.
I guess it's safe to say that I'm in little danger of walking out of here a prescription drug addicted junkie.
Monday 14 May 2012
Someone Used Their STERN Voice
Today was different.
My neurosurgeon was grumpy this morning ... not a day for idle chit chat. He usually stops by on his way into his office, so I see him around 8:30am. While pleased with how the incisions are healing, he did not seem pleased with the amount or quality of physio I've had in the five days I've been in the rehab unit. In their defense, two of those days were a weekend, but I've really only had three physio sessions, plus weekend homework, in the five days.
Less than an hour later, Physio lady is in my room, wanting to assess how I transfer from bed to wheelchair, from wheelchair to toilet, and back. Assess general stuff like putting on my socks and shoes, getting clothes from the drawers and other random day-to-day stuff. Then we went walkies in the wheelchair. New instructions to not use my arms with the wheelchair, but to walk with my feet, concentrate on heel strike, toe push, heel strike, toe push.
Wish she'd shown me that on Friday.
Session with Exercise guy was totally different today too. We started out with the walker, stumbling around the gym, then on to some serious standing exercises. Standing on these spikey inflated thingies (how's that for a technical term - see picture) in my bare feet. The pins and needles feelings in my feet were going crazy! Stand, squat, stand, squat. Lots of shuffle to the right, and shuffle to the left, and lots of resistance training. A full hour of "beat up on my right leg". But most importantly, we ended the session with another walk with the walker. I could actually feel the floor under the ball of my right foot, and my right knee wasn't giving out. I wouldn't say it was a controlled or comfortable walk, but exercise guy wasn't holding me up, and I was doing it. I count that as a success.
Session with Sensory guy was a low intensity workout for me because he was experimenting with TENS. Transcutaneous Electrical Nerve Stimulation (lots of bigs words). The nerves in my right leg were damaged such that I have peripheral neuropathy - I don't have a sense of feel and I have no situational awareness (at rest, I can't tell you where my leg is). This loss of position sense is what makes me unable to coordinate complex movements, ergo, I cannot walk. The sensory nerves that should be sending messages back to the brain are firing, but because of surgery trauma, the communication isn't getting through my spinal cord up to my brain. The purpose of TENS is to bombard my spinal cord with these impulses to encourage the nerve to heal itself. A couple of electrodes, crank up the juice and off we go. Kinda cool, and after a morning of tough love, I was good with lying back and being electrocuted :)
I don't know what was said, or if anything was said, but it sure seems like someone used their stern voice this morning to say get her walking!!.
I am thankful.
My neurosurgeon was grumpy this morning ... not a day for idle chit chat. He usually stops by on his way into his office, so I see him around 8:30am. While pleased with how the incisions are healing, he did not seem pleased with the amount or quality of physio I've had in the five days I've been in the rehab unit. In their defense, two of those days were a weekend, but I've really only had three physio sessions, plus weekend homework, in the five days.
Less than an hour later, Physio lady is in my room, wanting to assess how I transfer from bed to wheelchair, from wheelchair to toilet, and back. Assess general stuff like putting on my socks and shoes, getting clothes from the drawers and other random day-to-day stuff. Then we went walkies in the wheelchair. New instructions to not use my arms with the wheelchair, but to walk with my feet, concentrate on heel strike, toe push, heel strike, toe push.
Wish she'd shown me that on Friday.
Session with Sensory guy was a low intensity workout for me because he was experimenting with TENS. Transcutaneous Electrical Nerve Stimulation (lots of bigs words). The nerves in my right leg were damaged such that I have peripheral neuropathy - I don't have a sense of feel and I have no situational awareness (at rest, I can't tell you where my leg is). This loss of position sense is what makes me unable to coordinate complex movements, ergo, I cannot walk. The sensory nerves that should be sending messages back to the brain are firing, but because of surgery trauma, the communication isn't getting through my spinal cord up to my brain. The purpose of TENS is to bombard my spinal cord with these impulses to encourage the nerve to heal itself. A couple of electrodes, crank up the juice and off we go. Kinda cool, and after a morning of tough love, I was good with lying back and being electrocuted :)
I don't know what was said, or if anything was said, but it sure seems like someone used their stern voice this morning to say get her walking!!.
I am thankful.
Sunday 13 May 2012
Rick Hansen, I'm Not
Today was a great day for independence. My back is healing well and I'm feeling stronger and more energetic (I cautiously use the word "energetic" ... what I'm feeling may be better described as "non-comotose"). I spent more time today than yesterday bootin' around in the wheelchair. Off to the coffee shop a few times, zipping around the ward, out to the garden for some outdoor physio homework, and generally getting around my room. I'm starting to rejoin the world, and getting bored more easily. It still doesn't take much to entertain me, but just sitting in my room is losing its lustre. I'm also trying to move back to my life philosophy that beds are for sleep and sex. And, well, one of those is out, so the more time moving around or being a lobby lizard (1) watching the world go by, the better.
Up until surgery day, I was fairly religious about doing three weights work-outs a week at the gym. Lots of upper body and core strenghtening exercises, lots of flexibility training, and then the other days doing my share of cardio. I break a sweat when I work out. I push hard and there are lots of times when I feel it the next day. I have to shower. My clothes must be washed. None of these "brush my hair and change and go back to work workouts". So, I came into this surgery thinking my upper body was in decent shape. Not fitness model shape, but decent shape.
By mid-afternoon today I was wondering why my back, which has shown remarkable resistance to surgery after-effects, was achy. Not fall down sore, but just achy. They're weaning me off the steroids, but no change to any of the pain medication. I get my doses of slow release 10mg Oxy (which in the Oxy world ... I might as well not be taking any). So what's up with the ache?
I'm outside this evening, sitting in my wheelchair, doing my obligatory physio homework (lift right knee, down, lift left knee, down, lather, rinse repeat), generally contemplating the peacefulness of life, and thinking about my day. It was: Coffee run. Second coffee run. Visitor. Visitor. Lunch. Nap. Lobby Lizard. Visitor. Floor explore. ATM run. Dinner. Garden exercises. Well now ... a whole lot more wheeling than yesterday or the day before.
We'll see what tomorrow brings, but I'm thinking it's bringing on a stiff back. It's amazing how generic training trains you for nothing, but specific training trains you for only that, and you can't cross over. I was a decent enough runner, but that didn't make me a decent cyclist. I was a gym rat, but that doesn't make me Rick Hansen,
But give me a few days ...
(1) Lobby Lizard: officially defined by Urban Dictionary as someone who camps out in a hotel lobby hoping to meet a celebrity. But in my case, someone who camps out in the lounge area by the elevators, just being a Nosy Parker, busy body and "old lady next door". Keeping in the know of who is doing what, and socializing when I feel like it.
Myofascial Release and the Puking Neighbour
I did something new today, or more specifically, allowed someone to do something new to me today (and for those of dirty mind, not that kind of new fun). It was Myofascial release (MFR). When Exercise Guy asked if I was willing to try MFR, I had no clue what he was talking about. But, this rehab is all about get Sarah fixed, so I'm not going to turn down anything that an experienced professional thinks may add value. So ... okay,. I'll try.
We had done a hard (for me) half hour of muscle memory exercises on my spazzy leg requiring focus, concentration and strength. Try to pull the stretchy band this way (use those abductors baby ... you know, the those kick-ass in the gym two weeks ago, abductors), focus on form. Pull the knee toward you, focus on if you can feel the muscles moving. Lather, Rinse, Repeat. Then the good leg, but focus on maintaining perfect form with your spazzy right leg. All things I could have done in my sleep two weeks ago, but were challenging today. I was up for something that didn't involve leg work.
The theory behind Myofascial release is that irritation of muscle fibres (fascia) causes inflammation. If you don't deal with it, chronic inflammation causes thickening of the connective tissue, which in turn causes pain and irritation, which in turn results in muscle tension that causes more inflammation. Closed loop. MFR is intended to deal with the initial irritation - in my case caused by traumatic surgery. Using gentle pressure on key trigger points, my half hour session felt like incredibly mild massage therapy around my back incision. Not even massage therapy, maybe mild spa massage. The jury is out on the scientific, provable, benefits of MFR, but whether or not I believe in the science or the theory - I'm all up for relaxation. And it was veeery relaxing.
My neighbour's day didn't end like mine. She's out in the hallway where the staff can keep an eye on her, puking her guts out.
Some days your life isn't so bad.
We had done a hard (for me) half hour of muscle memory exercises on my spazzy leg requiring focus, concentration and strength. Try to pull the stretchy band this way (use those abductors baby ... you know, the those kick-ass in the gym two weeks ago, abductors), focus on form. Pull the knee toward you, focus on if you can feel the muscles moving. Lather, Rinse, Repeat. Then the good leg, but focus on maintaining perfect form with your spazzy right leg. All things I could have done in my sleep two weeks ago, but were challenging today. I was up for something that didn't involve leg work.
The theory behind Myofascial release is that irritation of muscle fibres (fascia) causes inflammation. If you don't deal with it, chronic inflammation causes thickening of the connective tissue, which in turn causes pain and irritation, which in turn results in muscle tension that causes more inflammation. Closed loop. MFR is intended to deal with the initial irritation - in my case caused by traumatic surgery. Using gentle pressure on key trigger points, my half hour session felt like incredibly mild massage therapy around my back incision. Not even massage therapy, maybe mild spa massage. The jury is out on the scientific, provable, benefits of MFR, but whether or not I believe in the science or the theory - I'm all up for relaxation. And it was veeery relaxing.
My neighbour's day didn't end like mine. She's out in the hallway where the staff can keep an eye on her, puking her guts out.
Some days your life isn't so bad.
Saturday 12 May 2012
"Use the Force, Luke"
"Use the force, Luke" is the only way I can begin describe what I am being asked to do by Exercise guy.
Luke "I don't believe it!"
Yoda "That ... is why you fail".
Believe
Exercise guy has has asked me to believe. Believe I can:
When he asks for these things, my able bodied mind says "of course". But then my brain starts to panic. I'm not holding onto anything, I can't feel the floor, I don't know if my right knee is bent or straight, I don't know if I'm holding my weight on one leg or two, I don't know how to take a step unless I can feel the step.
My goal here is to believe. To learn that sometimes your brain isn't right. Subdue the panic and let the force take over. Take that leap into the darkness. Forget that you can't feel what you're doing, blank your mind and just do what your muscles remember doing from when they could feel. Forget that you don't know if you are standing up straight, tilting forward or back, steady or wobbly. Blank your mind and trust your body to remember. You can't learn to walk until you walk.
Believe you can, and just do it.
"Do. Or do not. There is no try" (Yoda)
Luke "I don't believe it!"
Yoda "That ... is why you fail".
Believe
Exercise guy has has asked me to believe. Believe I can:
- stand on a leg that I cannot feel
- take a step, weight bearing on a leg my brain does not know exists
- stand on tippie toes I cannot feel
- listen to muscles that have no voice
- bend my knees and squat when I can't tell if my knee is bent or straight
When he asks for these things, my able bodied mind says "of course". But then my brain starts to panic. I'm not holding onto anything, I can't feel the floor, I don't know if my right knee is bent or straight, I don't know if I'm holding my weight on one leg or two, I don't know how to take a step unless I can feel the step.
My goal here is to believe. To learn that sometimes your brain isn't right. Subdue the panic and let the force take over. Take that leap into the darkness. Forget that you can't feel what you're doing, blank your mind and just do what your muscles remember doing from when they could feel. Forget that you don't know if you are standing up straight, tilting forward or back, steady or wobbly. Blank your mind and trust your body to remember. You can't learn to walk until you walk.
Believe you can, and just do it.
"Do. Or do not. There is no try" (Yoda)
Friday 11 May 2012
Being Cripped is a Hazard to your Health
I must be early in the adaption phase - I am starting to get used to having no feeling in my legs and feet, but not far enough along to remember to WATCH OUT FOR DANGER because I can't feel. I am my own worst enemy today.
Bruises
Today I managed to bruise the crap out of my right foot. When I was getting back into bed, I had no idea that my toes were caught under the wheels of the tray table, because I couldn't feel the touch on my foot. I started to swing my leg up, it resisted (of course, it was under the darned table), so I used my arms to help. As I gave a great heave, my foot was forced out from under the tray table hard enough for the table to move. Holy Crap Batman. That hurts!. I guess I still have pain sensation when it is strong enough :)
Bashes
Can I bash my spazzy shin into any more objects without knowing it? No sensory function + uncontrolled fling = bashing it on everything. But the strangest sensation is when my good leg bangs my bad leg. The good leg feels like it hit something hard, and the bad leg feels nothing, so my brain thinks the good leg is bashing up against something inanimate.
Bash ... what the heck? ... OMG it's my other leg! Freaky.
And then there's the missing top third of my big toenail, care of wild foot meets bed frame at 100 miles an hour. Exactly what they warned me about ... don't cut your feet!
Catching
I have to focus on keeping my spazzy foot on the footrest of the wheelchair. You'd think that would be easy except my mind still believes I'm able bodied, and if something goes wrong, I'll know. Yeah, well, that would be logical if I had sensory function. Today I had put my feet on the floor to support myself while I bent over to pick something up, and when I was ready to get moving again, I didn't bother with the foot rests. A small push and off I go. Then resistance. Then "why the heck am I not moving". Oh, because my right foot is stuck to the floor and dragging underneath the wheelchair ... and I don't know it. Crap.
When that happened, my first thought was, okay, I just need to work out a "get established in the wheelchair" routine, then I'll be okay. OMG I'm in the hospital and I'm thinking about process.
I think there's a saying about leopards and spots. But after today, I'll never leave the bed without shoes on.
Bruises
Today I managed to bruise the crap out of my right foot. When I was getting back into bed, I had no idea that my toes were caught under the wheels of the tray table, because I couldn't feel the touch on my foot. I started to swing my leg up, it resisted (of course, it was under the darned table), so I used my arms to help. As I gave a great heave, my foot was forced out from under the tray table hard enough for the table to move. Holy Crap Batman. That hurts!. I guess I still have pain sensation when it is strong enough :)
Bashes
Can I bash my spazzy shin into any more objects without knowing it? No sensory function + uncontrolled fling = bashing it on everything. But the strangest sensation is when my good leg bangs my bad leg. The good leg feels like it hit something hard, and the bad leg feels nothing, so my brain thinks the good leg is bashing up against something inanimate.
Bash ... what the heck? ... OMG it's my other leg! Freaky.
And then there's the missing top third of my big toenail, care of wild foot meets bed frame at 100 miles an hour. Exactly what they warned me about ... don't cut your feet!
Catching
I have to focus on keeping my spazzy foot on the footrest of the wheelchair. You'd think that would be easy except my mind still believes I'm able bodied, and if something goes wrong, I'll know. Yeah, well, that would be logical if I had sensory function. Today I had put my feet on the floor to support myself while I bent over to pick something up, and when I was ready to get moving again, I didn't bother with the foot rests. A small push and off I go. Then resistance. Then "why the heck am I not moving". Oh, because my right foot is stuck to the floor and dragging underneath the wheelchair ... and I don't know it. Crap.
When that happened, my first thought was, okay, I just need to work out a "get established in the wheelchair" routine, then I'll be okay. OMG I'm in the hospital and I'm thinking about process.
I think there's a saying about leopards and spots. But after today, I'll never leave the bed without shoes on.
Thursday 10 May 2012
Why do the Elderly Moan?
My suite-mate changed over today.
This is what the suite looks like (actual promotional picture). You can see the curtain that closes between the rust coloured wall and the window separating tenant A from tenant B, making it officially "semi private". The shared bathroom with a roll-in shower is the room behind the heads of the beds. Each tenant has their own window, own entry door and their own doorway into the bathroom.
The design is based on the theory that physical environments impact the quality and delivery of health care for patients and staff. And let me tell you - after coming from the hell hole that was the spinal unit, the designers are right!
But back to my story.
The previous tenant was an ancient, depressed, resentful and angry woman who spent her entire visit refusing to do anything except sleep and be incontinent. Well, I don't actually know she was angry and depressed, but she certainly seemed that way. Her urge to spend her entire life sleeping made her the perfect suite-mate for me!
Hospital management decided they had had enough, and kicked her out. I got to be a fly on the wall for the discussion between the hospital staff and the adult son ... and also to be a witness to how his mother was actually behaving vs how she behaved when he was there. Nothing like juicy hospital gossip - who needs daytime TV! Well, kudos to management for doing the right thing, this is tax payer funded rehab, not chronic care.
Beds don't stay empty for long - so my new suite-mate moved in right away. Very sick and elderly. Chronic this, chronic that., on oxygen and a CPAP machine. But that didn't stop her from working her way through her phone book yapping to everyone she had in there about her new room, arranging for her TV service (oy) and dozing on and off (I know, again with the fly-on the wall) So far she's had no urge to contact me, so I take this to mean she's not going to be one of those "how was your physio, dear" every time I leave the room types. WIN !
But, I'm going to need my earplugs - she's a moaner. If her mouth ain't talking, it's moaning. If I didn't know better, I'd swear she either brought a sex toy or she's watching porn with the volume on!
This is what the suite looks like (actual promotional picture). You can see the curtain that closes between the rust coloured wall and the window separating tenant A from tenant B, making it officially "semi private". The shared bathroom with a roll-in shower is the room behind the heads of the beds. Each tenant has their own window, own entry door and their own doorway into the bathroom. The design is based on the theory that physical environments impact the quality and delivery of health care for patients and staff. And let me tell you - after coming from the hell hole that was the spinal unit, the designers are right!
But back to my story.
The previous tenant was an ancient, depressed, resentful and angry woman who spent her entire visit refusing to do anything except sleep and be incontinent. Well, I don't actually know she was angry and depressed, but she certainly seemed that way. Her urge to spend her entire life sleeping made her the perfect suite-mate for me!
Hospital management decided they had had enough, and kicked her out. I got to be a fly on the wall for the discussion between the hospital staff and the adult son ... and also to be a witness to how his mother was actually behaving vs how she behaved when he was there. Nothing like juicy hospital gossip - who needs daytime TV! Well, kudos to management for doing the right thing, this is tax payer funded rehab, not chronic care.
Beds don't stay empty for long - so my new suite-mate moved in right away. Very sick and elderly. Chronic this, chronic that., on oxygen and a CPAP machine. But that didn't stop her from working her way through her phone book yapping to everyone she had in there about her new room, arranging for her TV service (oy) and dozing on and off (I know, again with the fly-on the wall) So far she's had no urge to contact me, so I take this to mean she's not going to be one of those "how was your physio, dear" every time I leave the room types. WIN !
But, I'm going to need my earplugs - she's a moaner. If her mouth ain't talking, it's moaning. If I didn't know better, I'd swear she either brought a sex toy or she's watching porn with the volume on!
Wednesday 9 May 2012
Watch out World, I've Got Wheels !!
Wahoo !!
Free wheelin', freedom lovin', fun times wheels!
A very exciting day today.
Wheels
Most importantly, I got wheels, and the go ahead to use them. I also got a two wheeled walker, but it has a big red sticker on it - a cue to the staff that I'm not to be out on that thing alone. Learners permit only. Do not drive without a fully licenced driver present. I was able to take the wheelchair for a scoot around the floor. Sticking close to home for the first day, but the freedom to move at will was spectacular. Realistically it would only have been yesterday or today that I was physically up to self propulsion, so these guys seem to know what they're doing, (imagine the people doing this for a living knowing what they're doing), but I still wish I could have had it sooner.
In the past week I was able to ask for help at any time, and the staff were always happy to do so, but I am unable to describe the fantastic-ness of being able to go wherever, whenever, on my own. Especially the bathroom. We have dignity restored!
Staples
Neurosurgeon stopped by on his morning walkthrough to say hello and is "pleased with the wound", and left instructions that half the staples be removed. My understanding is that with incisions the size of mine, he wants to remove every other staple at 7 days to see how the skin reacts, then the other half later in the week. Ok.
But holy bananas .. don't ever let a new nurse try to take staples out of you. The ones down my back were O-kay .. with a real hesitation on the "Ooooooh" . Then there were the staples on my thigh. I've seen some pain in my time but I had to stop her after removing three ... I couldn't possibly make it through the next five without a local. I don't know what the heck she was trying to do, but OMG it didn't even hurt that much to stand up the first day after surgery. I'll let the surgeon decide in the morning whether someone new tries it, or whether he leaves them in for later.
Update: Neurosurgeon decided that the rest should come out today. Needless to say, terrified. Well, I have to give credit where credit is due, and as much as I don't like the admitting nurse, she was on this morning and took out the rest of the staples. Honestly ... I barely felt it. A wee pinch but not a hint of pain .. none of the screaming, sheet grabbing, agonizing pain of yesterday.
Physio Assessment
The physio assessment had to be delayed for half an hour because of the staples fiasco ... I was ready to pass out and needed time for the pain killers to kick in before I would be able to do any kind of exertion.
Occupational lady - (I wasn't expecting her) she watched the physio assessment and watched things like my transfer from bed to wheel chair, from bed to walker, putting on my socks and shoes, tying up my shoes .., general observation and questions about my house. Happy enough to have her along - I will never turn down qualified help in my recovery.
Physio guy - total testing of toes, ankles, knees and hips - don't look and tell me which way am I bending - up, down, neutral. Total testing of pain (yes, the old fashioned safety pin), temperature, touch and tickle for both legs and comparing both legs. Wow ... 45 minutes and my legs were shaking, they were so tired. Then, oh joy, the two wheeled walker. We're going walking? What went through my mind was "you've got to be freakin' kidding me". What came out of my mouth was "okay ... let's go". Sounds like this surgery destroyed the neural connection between my brain and my mouth!
They are plotting and scheming tonight and I will have two to three sessions a day, seven days a week,. starting tomorrow. One in the gym, one doing exercises, and one doing "life stuff".
For tonight I enjoy my feet being up and my evening to myself. And the knowledge that I will be their best darned physio patient ever.
Free wheelin', freedom lovin', fun times wheels!
A very exciting day today.
Wheels
Most importantly, I got wheels, and the go ahead to use them. I also got a two wheeled walker, but it has a big red sticker on it - a cue to the staff that I'm not to be out on that thing alone. Learners permit only. Do not drive without a fully licenced driver present. I was able to take the wheelchair for a scoot around the floor. Sticking close to home for the first day, but the freedom to move at will was spectacular. Realistically it would only have been yesterday or today that I was physically up to self propulsion, so these guys seem to know what they're doing, (imagine the people doing this for a living knowing what they're doing), but I still wish I could have had it sooner.
In the past week I was able to ask for help at any time, and the staff were always happy to do so, but I am unable to describe the fantastic-ness of being able to go wherever, whenever, on my own. Especially the bathroom. We have dignity restored!
Staples
Neurosurgeon stopped by on his morning walkthrough to say hello and is "pleased with the wound", and left instructions that half the staples be removed. My understanding is that with incisions the size of mine, he wants to remove every other staple at 7 days to see how the skin reacts, then the other half later in the week. Ok.
But holy bananas .. don't ever let a new nurse try to take staples out of you. The ones down my back were O-kay .. with a real hesitation on the "Ooooooh" . Then there were the staples on my thigh. I've seen some pain in my time but I had to stop her after removing three ... I couldn't possibly make it through the next five without a local. I don't know what the heck she was trying to do, but OMG it didn't even hurt that much to stand up the first day after surgery. I'll let the surgeon decide in the morning whether someone new tries it, or whether he leaves them in for later.
Update: Neurosurgeon decided that the rest should come out today. Needless to say, terrified. Well, I have to give credit where credit is due, and as much as I don't like the admitting nurse, she was on this morning and took out the rest of the staples. Honestly ... I barely felt it. A wee pinch but not a hint of pain .. none of the screaming, sheet grabbing, agonizing pain of yesterday.Physio Assessment
The physio assessment had to be delayed for half an hour because of the staples fiasco ... I was ready to pass out and needed time for the pain killers to kick in before I would be able to do any kind of exertion.
Occupational lady - (I wasn't expecting her) she watched the physio assessment and watched things like my transfer from bed to wheel chair, from bed to walker, putting on my socks and shoes, tying up my shoes .., general observation and questions about my house. Happy enough to have her along - I will never turn down qualified help in my recovery.
Physio guy - total testing of toes, ankles, knees and hips - don't look and tell me which way am I bending - up, down, neutral. Total testing of pain (yes, the old fashioned safety pin), temperature, touch and tickle for both legs and comparing both legs. Wow ... 45 minutes and my legs were shaking, they were so tired. Then, oh joy, the two wheeled walker. We're going walking? What went through my mind was "you've got to be freakin' kidding me". What came out of my mouth was "okay ... let's go". Sounds like this surgery destroyed the neural connection between my brain and my mouth!
They are plotting and scheming tonight and I will have two to three sessions a day, seven days a week,. starting tomorrow. One in the gym, one doing exercises, and one doing "life stuff".
For tonight I enjoy my feet being up and my evening to myself. And the knowledge that I will be their best darned physio patient ever.
Recovery - I made it through the first week
People tell me I'm brave, I hear the "hero" word, the "strong, tough, can-do" words. Besides a positive attitude and the recurring thought that my neurosurgeon had better be right in his optimism, I don't know that it's about brave or strong. I think it's about coping and playing with the hand you were dealt.
That's not to say it's easy. I struggle to remind myself that I shouldn't be able to do everything yet. That the goal of traumatic injury is to recover slowly, that this surgery was TRAUMATIC and is putting incredible stress on my body. I struggle to remember that napping every hour is okay. To remember that the simple act of walking (and honestly, to call it "walking" is such an exaggeration) 30 feet with all that help, is not simple, and it's exhausting, and that's okay. To remember that having a shower is a super-big deal to be acheived and celebrated.
I guess it's even okay to have down days where everything and everyone sucks. And there are times when they SUCK !! Not just lower case suck, but big fat upper case, bold, italic suck. I guess it's a good thing that I want to walk more than I want to focus on everything that has gone wrong. There is lots of frustration with the baby steps. Remembering that more doesn't mean better, that faster doesn't mean better, that working harder doesn't mean working smarter. I have come a long way in allowing myself to believe in the instructions of the professionals. As long as they think there's progress, then I shoud be good, right?. I've fallen off and crawled back up on the fitness wagon more times than I can count. And I can do it again. This won't be any different. I just have to listen and do it their way. (oh, I can hear the laughter from those who know me, who've been telling me for years to chill, and to be less controlled and independent and to ask for help.)
I'm trying hard to realize that it's not all about me. That the people out there who care about me are affected too. The look on my son's face when he watched his mom be moved from the chair to the bed by two physiotherapists because my legs won't hold me (or maybe it was the sight of my butt flashing at him that freaked him out .. not sure). The laughter from him when my right leg was spazzing and flailing and kicking until I concentrated on controlling it. (I can do that trick all day). But I still won't let my father watch any of the attempts at walking - sometimes you do have to protect those you love from unnecessary memories. He can watch it on video six months from now when I'm running up and down the stairs again.
We never get our own last laugh .... and that's something to just accept. People tell me I'm a control freak. I'm not, I think I'm actually quite relaxed, but I've seen enough episodes of Hoarders to know that most people deny their basic tendencies. So maybe I'm not so relaxed. This week has been a HUGE effort in letting go. There are things I can't do. I just can't. I start to try, have to concede, then ask for help.
Mother Nature has a wicked sense of humour.
That's not to say it's easy. I struggle to remind myself that I shouldn't be able to do everything yet. That the goal of traumatic injury is to recover slowly, that this surgery was TRAUMATIC and is putting incredible stress on my body. I struggle to remember that napping every hour is okay. To remember that the simple act of walking (and honestly, to call it "walking" is such an exaggeration) 30 feet with all that help, is not simple, and it's exhausting, and that's okay. To remember that having a shower is a super-big deal to be acheived and celebrated.
I guess it's even okay to have down days where everything and everyone sucks. And there are times when they SUCK !! Not just lower case suck, but big fat upper case, bold, italic suck. I guess it's a good thing that I want to walk more than I want to focus on everything that has gone wrong. There is lots of frustration with the baby steps. Remembering that more doesn't mean better, that faster doesn't mean better, that working harder doesn't mean working smarter. I have come a long way in allowing myself to believe in the instructions of the professionals. As long as they think there's progress, then I shoud be good, right?. I've fallen off and crawled back up on the fitness wagon more times than I can count. And I can do it again. This won't be any different. I just have to listen and do it their way. (oh, I can hear the laughter from those who know me, who've been telling me for years to chill, and to be less controlled and independent and to ask for help.)
I'm trying hard to realize that it's not all about me. That the people out there who care about me are affected too. The look on my son's face when he watched his mom be moved from the chair to the bed by two physiotherapists because my legs won't hold me (or maybe it was the sight of my butt flashing at him that freaked him out .. not sure). The laughter from him when my right leg was spazzing and flailing and kicking until I concentrated on controlling it. (I can do that trick all day). But I still won't let my father watch any of the attempts at walking - sometimes you do have to protect those you love from unnecessary memories. He can watch it on video six months from now when I'm running up and down the stairs again.
We never get our own last laugh .... and that's something to just accept. People tell me I'm a control freak. I'm not, I think I'm actually quite relaxed, but I've seen enough episodes of Hoarders to know that most people deny their basic tendencies. So maybe I'm not so relaxed. This week has been a HUGE effort in letting go. There are things I can't do. I just can't. I start to try, have to concede, then ask for help.
Mother Nature has a wicked sense of humour.
Tuesday 8 May 2012
Welcome to Rehab
I've been moved.
Again
But this time it's a nice move. This wing of the hospital is about 2 years old, and even the semi-private rooms are essentially private by design .. we really only share a bathroom. My suite-mate is being discharged tomorrow, but so far all I've seen her do is sleep. I'm good with that, so I'm not so sure about her being discharged (even if her visiting daughter and grandchild are loud), that could bad for me ... you never know who the next tenant will be!
The admitting nurse and I will not get along. I can tell that from the get-go. We're about the same age, but I'm the fit-but-disabled patient, and she's the unfit-but-abled medical person. Wow ... lecturing me on my eating and drinking habits. Already. 15 minutes in. And then standing outside my door bitching to a colleague about how overworked/hard done by they are. Hmmm ... one of those people who, if she'd spend as much time working as she did bitching, she'd have nothing to bitch about. Complete with the insecure-but-bossy personality that comes with being a victim of the world. All the staffing inconsistencies that I have been complaining about are going to turn into a blessing if it means our paths don't cross very often. Maybe I'll change my mind, but first impressions go a long way. Afternoon nurse told me that it will likely be this chiquitta who takes out my staples, so I have to be nice to her until at least then.
I have heard the entire life story of my afternoon nurse. His supermodel girlfriend, his advice - don't get a supermodel girlfriend, they're way too high maintenance - how he wants to emigrate to Australia and how he got a stupid DUI charge and maybe he'll lose his licence. He obsessed over the DUI oharge. Plopped down in my guest chair and talked to me for 20 minutes. "I've hired a lawyer, what am I going to do, what if I can't drive, hell I just paid $20,000 for that car" blah, blah, blah. Okay. Look at where you work ... you don't wonder why people tell you to take your problems somewhere else?
I am surrounded mostly by older stroke victims, so I am probably the youngest one here (unless there is an accident victim I haven't seen). Everyone is assigned a "team" of specialists in their treatment program. My team is considered small by comparison ... I have no need for the occupational therapist, the speech therapist, the cognitive therapist or the social worker. Just me, my neurosurgeon and the physio dude. Tomorrow is my full assessment with my team and plan development for my rehab program. I will be reassessed week to week and we go one step at a time.
This is going to be an interesting place ...
Again
But this time it's a nice move. This wing of the hospital is about 2 years old, and even the semi-private rooms are essentially private by design .. we really only share a bathroom. My suite-mate is being discharged tomorrow, but so far all I've seen her do is sleep. I'm good with that, so I'm not so sure about her being discharged (even if her visiting daughter and grandchild are loud), that could bad for me ... you never know who the next tenant will be!
The admitting nurse and I will not get along. I can tell that from the get-go. We're about the same age, but I'm the fit-but-disabled patient, and she's the unfit-but-abled medical person. Wow ... lecturing me on my eating and drinking habits. Already. 15 minutes in. And then standing outside my door bitching to a colleague about how overworked/hard done by they are. Hmmm ... one of those people who, if she'd spend as much time working as she did bitching, she'd have nothing to bitch about. Complete with the insecure-but-bossy personality that comes with being a victim of the world. All the staffing inconsistencies that I have been complaining about are going to turn into a blessing if it means our paths don't cross very often. Maybe I'll change my mind, but first impressions go a long way. Afternoon nurse told me that it will likely be this chiquitta who takes out my staples, so I have to be nice to her until at least then.
I have heard the entire life story of my afternoon nurse. His supermodel girlfriend, his advice - don't get a supermodel girlfriend, they're way too high maintenance - how he wants to emigrate to Australia and how he got a stupid DUI charge and maybe he'll lose his licence. He obsessed over the DUI oharge. Plopped down in my guest chair and talked to me for 20 minutes. "I've hired a lawyer, what am I going to do, what if I can't drive, hell I just paid $20,000 for that car" blah, blah, blah. Okay. Look at where you work ... you don't wonder why people tell you to take your problems somewhere else?
I am surrounded mostly by older stroke victims, so I am probably the youngest one here (unless there is an accident victim I haven't seen). Everyone is assigned a "team" of specialists in their treatment program. My team is considered small by comparison ... I have no need for the occupational therapist, the speech therapist, the cognitive therapist or the social worker. Just me, my neurosurgeon and the physio dude. Tomorrow is my full assessment with my team and plan development for my rehab program. I will be reassessed week to week and we go one step at a time.
This is going to be an interesting place ...
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