Recovery at eight weeks looks identical to recovery at six weeks- my deficiencies are all still the same, and my abilities are all still the same, just a little more refined.
I had my eight week check-up with the neurosurgeon yesterday and he was neither impressed nor discouraged with the state of the nation ... he seemed pretty neutral about the whole thing. Scars have healed well, muscular strength in my legs is pretty good, and my knee and ankle reflexes are behaving appropriately. It was a lot of driving back and forth for a 15 minute appointment, but at least he was on time :) His prognosis - continue doing what I'm doing, get as much physio as I can, keep at it for as long as I can, we'll do another MRI in a few months, and he'll see me again in three months.
My question for him ... when will I stop being exhausted all the time? Surely I should have some energy by now. Apparently I should have energy by now, but it can take up to three months for the body to recover from surgery as serious as mine. Great. I'd love to be able to go out for more than an hour.
I suppose a positive thing is that my brain is starting to consider the numbness and lack of sensation in my legs as "white noise". I guess my instinctive, hard wired warning system is finally calming and my brain is recognizing that those symptoms don't mean I'm in danger. Nothing to be warned about. Just the usual numbness. The benefit? I can finally sleep at night. No more waking up because my brain doesn't know where my leg is. No more waking up because it's freaked out about the feeling of the sheets against my feet. No more tumour back pain.
For the first time in two years, I'm sleeping through the night.
Thursday 28 June 2012
Saturday 23 June 2012
Why is "GO SLOW" Not in My Nature?
How many times have I warned myself about too much too soon.
Right. A million.
When you do things too quickly, you learn and reinforce bad habits. This simply results in doing something awesomely, badly. I know this. I've lived this. I've warned myself about this. But apparently leopards are leopards and all the intellectual arguing in the world doesn't stop me from doing what I always do. Too much too soon.
In my frustration to get mobile I've been reinforcing some bad habits. I knew it. I warned myself about it. "Sarah, that's not a good thing to be doing ... slow down and do it properly". I continued to do it. Today I pay for it.
I've managed, through compensating for bad posture, bad positioning, and bad habits, to strain/pull/stress/tear a muscle or two in my back. If I twist, turn, stress, cough, sneeze or otherwise move the wrong way, Holy Flippin' OUCH! Pain worse than any of the pain I went through post surgery. The kind of pain that makes you stop breathing. The kind of pain that makes those bads words come out of your mouth, even in front of your kids.
From what triggers it, I can tell what caused it. When you stand up - always push (never pull) and use your legs! When you walk, weight bear equally and use your canes (never hobble with no canes). When you reach, use your legs (don't over-extend). Turn your body (don't twist your back).
Apparently those physio guys know their stuff better than I do.
Go figure.
Right. A million.
When you do things too quickly, you learn and reinforce bad habits. This simply results in doing something awesomely, badly. I know this. I've lived this. I've warned myself about this. But apparently leopards are leopards and all the intellectual arguing in the world doesn't stop me from doing what I always do. Too much too soon.
In my frustration to get mobile I've been reinforcing some bad habits. I knew it. I warned myself about it. "Sarah, that's not a good thing to be doing ... slow down and do it properly". I continued to do it. Today I pay for it.
I've managed, through compensating for bad posture, bad positioning, and bad habits, to strain/pull/stress/tear a muscle or two in my back. If I twist, turn, stress, cough, sneeze or otherwise move the wrong way, Holy Flippin' OUCH! Pain worse than any of the pain I went through post surgery. The kind of pain that makes you stop breathing. The kind of pain that makes those bads words come out of your mouth, even in front of your kids.
From what triggers it, I can tell what caused it. When you stand up - always push (never pull) and use your legs! When you walk, weight bear equally and use your canes (never hobble with no canes). When you reach, use your legs (don't over-extend). Turn your body (don't twist your back).
Apparently those physio guys know their stuff better than I do.
Go figure.
Thursday 21 June 2012
Musings from the Gym - Post Surgery
Ha! Look at me all adventurous. I made my daughter drive me to the gym.
Right. First task - 24 steps down to even get in the place. Note to self - save energy to come back up these darned things after the "workout".
I went to the gym more for my mental health than anything else. It brings a sense of normalcy, something I did in my past life, a place I enjoy being. If I can get to the gym then I must be getting better.
It was quite the experience. I'm still strong - that's good news, but I have no endurance and NO coordination. Trying to avoid classic Sarah too-much-too-soon, I chose to do half the reps at whatever comfortable weight, for whichever equipment I was comfortable trying out. Free weights are too tricky - no way I can carry them to where I need to be. I could only handle three leg exercises before my brain freaked out. It was really struggling to process my right leg participating but with no feedback. I also struggled a bit with the equipment. I'd never really thought about how complicated it actually is, physically, to use weight equipment. The logistics of adjusting, setting, sitting and reaching are a whole lot more than you think they are.
I managed to get in a couple of upper body exercises before the desperate search for a mat strategically located beside something sturdy to help me stand up. Down is easy, standing up from floor level ... complicated! (Lie down on the floor then try to stand up using only one leg ... tough!)
So ... it was neither sexy nor glamourous, nor did it particularly do anything to increase my strength or endurance, but it was good for my sanity. I can't compare myself to two months ago, but if I compare myself to what I could do four weeks ago, there is some progress.
But best of all, I can say it only took me two months to get back in the gym.
Right. First task - 24 steps down to even get in the place. Note to self - save energy to come back up these darned things after the "workout".
I went to the gym more for my mental health than anything else. It brings a sense of normalcy, something I did in my past life, a place I enjoy being. If I can get to the gym then I must be getting better.
It was quite the experience. I'm still strong - that's good news, but I have no endurance and NO coordination. Trying to avoid classic Sarah too-much-too-soon, I chose to do half the reps at whatever comfortable weight, for whichever equipment I was comfortable trying out. Free weights are too tricky - no way I can carry them to where I need to be. I could only handle three leg exercises before my brain freaked out. It was really struggling to process my right leg participating but with no feedback. I also struggled a bit with the equipment. I'd never really thought about how complicated it actually is, physically, to use weight equipment. The logistics of adjusting, setting, sitting and reaching are a whole lot more than you think they are.
I managed to get in a couple of upper body exercises before the desperate search for a mat strategically located beside something sturdy to help me stand up. Down is easy, standing up from floor level ... complicated! (Lie down on the floor then try to stand up using only one leg ... tough!)
So ... it was neither sexy nor glamourous, nor did it particularly do anything to increase my strength or endurance, but it was good for my sanity. I can't compare myself to two months ago, but if I compare myself to what I could do four weeks ago, there is some progress.
But best of all, I can say it only took me two months to get back in the gym.
Tuesday 19 June 2012
I Haven't Disappeared
I'm still here. I'm not depressed, or "down", or full of the blues.
Just bored.
And I don't have much to say.
My day-to-day life is settling into some type of routine, and I'm still in the recovery plateau, so there is nothing much new to report. With the immediate recovery from surgery duly passed, progress now becomes measured in micro-successes.
I'm stunned at how little energy I have this far past surgery ... I'm generally still sleeping 10-12 hours a day, and most of the awake hours are spent on the couch. I do my hour of physio homework, or I go to physio (where he honestly tries to kill me ...) and I make an attempt to plan something for each day, but it never involves being off the couch for more than an hour at a time.
So, with nothing new to say each day (aside from boring you with the mundane details of day-to-day existence which everyone knows all too well from their own life), blog entries are slowing down. It's just very slow nerve healing from here on in, to whatever degree these nerves are going to heal. I'm not expected to notice anything new until, at a minimum, three months post surgery. Another five weeks away.
In the mean time, I hobble, weeble, wobble and stagger along. Doing what I'm supposed to do and hoping for the best.
Just bored.
And I don't have much to say.
My day-to-day life is settling into some type of routine, and I'm still in the recovery plateau, so there is nothing much new to report. With the immediate recovery from surgery duly passed, progress now becomes measured in micro-successes.
I'm stunned at how little energy I have this far past surgery ... I'm generally still sleeping 10-12 hours a day, and most of the awake hours are spent on the couch. I do my hour of physio homework, or I go to physio (where he honestly tries to kill me ...) and I make an attempt to plan something for each day, but it never involves being off the couch for more than an hour at a time.
So, with nothing new to say each day (aside from boring you with the mundane details of day-to-day existence which everyone knows all too well from their own life), blog entries are slowing down. It's just very slow nerve healing from here on in, to whatever degree these nerves are going to heal. I'm not expected to notice anything new until, at a minimum, three months post surgery. Another five weeks away.
In the mean time, I hobble, weeble, wobble and stagger along. Doing what I'm supposed to do and hoping for the best.
Saturday 16 June 2012
Recovery at Six Weeks
If you've been diagnosed with this lovely tumour, or something in the same family that involves messing around in your spinal cord, these are my answers to some questions I had before surgery. (If you are reading this to keep updated on how Sarah is doing, then there is some repeat info.)
My tumour was bigger than most by the time it was diagnosed, so my laminectomy was more extreme than others will encounter. If only one or two of your vertebrae and a smaller length of spinal cord is affected, then your recovery will not likely be as intense. My neurosurgeon had to cut apart six vertebrae, graft a ligament from my thigh and leave me with 12" and 5" scars (but with modern technology, scars are nothing like they were even 10 years ago).
At Six Weeks - Deficiencies
At Six Weeks - What I can Do
My tumour was bigger than most by the time it was diagnosed, so my laminectomy was more extreme than others will encounter. If only one or two of your vertebrae and a smaller length of spinal cord is affected, then your recovery will not likely be as intense. My neurosurgeon had to cut apart six vertebrae, graft a ligament from my thigh and leave me with 12" and 5" scars (but with modern technology, scars are nothing like they were even 10 years ago).
- The sexy hospital gown - I wore it for a month (honestly, they are the best jammies ever!)
- Morphine - man's best friend. I had no side effects and it managed my pain beautifully
- Laminectomy - full. Spinous process for six vertebrae are gone, replaced with a ligament from my thigh
- Scrubs - they make the nurses a little nervous, but fantastic to wear
- ass lying in bed for two days - for me it was seven days
- 3-7 day steriod taper - yep. They blast the crap out of you with steriods then wean you off them
- foley catheter - yep. 24 hours for me, then a week of them trying to get me to use a toilet. Joy.
- compression pumps on your legs - yep. six days for me
- deep breathing - not so much, they weren't very concerned about my lungs. Same with the incision, they were generally pleased with how it was healing, but did keep a close eye on it (them).
- physiotherapy - I really, really underestimated the intensity of how much physio I would need and get, but I also was only thinking about coming out of the hospital in best case scenario
- The Today I Take Nothing for Granted post makes me cry when I read it. You cannot fully appreciate what you have. Ever.
- You need to buy a wheelchair - nope. Not for me. It looks like the rollator is as fancy as I'll get. And then I'll hand-me-up it to my parents when my nerves have finally healed :)
At Six Weeks - Deficiencies
- Still no temperature or sharp pain sensations in my left leg.
- Still no vibration, soft touch or proprioception in my right leg
- Both feet are numb most of the time which makes walking on hard surfaces feel painful
- Both legs are numb up the back of my thighs and butt which makes sitting on hard surfaces feel painful
At Six Weeks - What I can Do
- Ambulate with caution and assistance
- Stand on my own (briefly - 2 minutes, max), but no twisting, turning or losing focus.
- I can function in my house and do household "stuff" ... with lots of rest
- Beginning to explore the outside world with extreme caution and in small doses. Yesterday I "went for a walk" outside. From the stop sign to the west to the stop sign on the east and home. Maybe 400 metres.
Friday 15 June 2012
People Love Other People's Drama
This post started out as a retrospective on previous postings, questions I had had and answers that only experience could provide. In order to do that I had to find the questions I'd asked - I had a pretty good idea of where to look, but it still took some searching. The way I chose to search also provided me with the stats on the blog, including the number of hits on each post.
I discovered something interesting. Headlines are important to the reader (I know - anyone out there in journalism or media is shaking their head saying "no shit Sherlock, we've known that forever"). Headlines that hint at personal angst or trauma are the favoured kind. The top three posts on this blog? Now I Need the Shrink, Extreme and the Shrink and I Didn't Get Myself Killed. Ah, the human instinct on how to predetermine what will likely be "interesting".
How to fill these posts with angst and drama to make it interesting to the reader? Some days there isn't a way. Some days are filled with monotonous boredom beyond description where my brain stagnates and I wonder if I'll ever have another intellectual thought again. Some days are filled with frustration as I look around at the small things that aren't getting done because I haven't had the energy to do it - small houses only survive on organization because there just isn't space to put everything "just anywhere". Most days are filled with the same routine over and over and over.
But that's going to change. Yesterday I took charge of my life again. Okay, everybody out !! It's been six weeks since the surgery. I think four weeks in the hospital and two weeks of babysitting are enough. I like having company, but I need lots of time alone. Alone is relaxing, peaceful, stress-free. Sure I get bored, but I don't get lonely. No I can't do 100% of everything yet. If I fall, I fall, I'll get over it. If I'm hungry, I'll figure it out. If I need help with something specific, I'll ask.
I release myself of angst, and pass it to anyone who chooses to be burdened with it on my behalf.
Now, if only I trusted myself to drive ....
I discovered something interesting. Headlines are important to the reader (I know - anyone out there in journalism or media is shaking their head saying "no shit Sherlock, we've known that forever"). Headlines that hint at personal angst or trauma are the favoured kind. The top three posts on this blog? Now I Need the Shrink, Extreme and the Shrink and I Didn't Get Myself Killed. Ah, the human instinct on how to predetermine what will likely be "interesting".
How to fill these posts with angst and drama to make it interesting to the reader? Some days there isn't a way. Some days are filled with monotonous boredom beyond description where my brain stagnates and I wonder if I'll ever have another intellectual thought again. Some days are filled with frustration as I look around at the small things that aren't getting done because I haven't had the energy to do it - small houses only survive on organization because there just isn't space to put everything "just anywhere". Most days are filled with the same routine over and over and over.
But that's going to change. Yesterday I took charge of my life again. Okay, everybody out !! It's been six weeks since the surgery. I think four weeks in the hospital and two weeks of babysitting are enough. I like having company, but I need lots of time alone. Alone is relaxing, peaceful, stress-free. Sure I get bored, but I don't get lonely. No I can't do 100% of everything yet. If I fall, I fall, I'll get over it. If I'm hungry, I'll figure it out. If I need help with something specific, I'll ask.
I release myself of angst, and pass it to anyone who chooses to be burdened with it on my behalf.
Now, if only I trusted myself to drive ....
Thursday 14 June 2012
Squats and Storks and Stand ups
I have homework.
New physio, round 1, started today with a run through of workouts that I have to do as homework to compliment the physio done in-house at the hospital. Okay ... cool. easy enough.
HA !! I didn't do that kind of awful ab work when I was in the gym before surgery! You know, those dreaded leg raises and hold, hold, hold, hold. Or leg extensions and hold, hold, hold, hold. They were hard enough when I was able bodied, let alone now that one leg wants to wander all through the air and I have to focus intensely to try to even keep my feet together.
And squats. Really, what's up with the squats? 2 sets of 15 ... and I have to look after every one or two squats to make sure that my right foot/leg hasn't twisted out of alignment or position. I hated squats when I had full use of my legs and I hate them now. Too bad for me.
Lots of sit/stand repeats (oh, the things you take for granted), heel/toe one foot in front of the other balance work (yeah, I have to hold on for that one), and doing standing leg raises that made me feel very stork-like. A wobbly-need-to-hold-on stork, but good practice for the leg.
Then the stretching and flexibility. Sigh ... my hands haven't seen my toes in 30 years, and as much as I was making progress before surgery, it's all disappeared in the last six weeks. I'm sure it looked like I was just sitting there with my hands on my knees, but honest, it was pulling the backs of my knees and hamstrings like crazy.
I'll be sore tomorrow, but it will be the good kind of sore - the kind where you accomplished a workout and you muscles ask you for a bit of space to recover. The kind of workout that makes you feel better for having done it. The kind of sore that means progress.
New physio, round 1, started today with a run through of workouts that I have to do as homework to compliment the physio done in-house at the hospital. Okay ... cool. easy enough.
HA !! I didn't do that kind of awful ab work when I was in the gym before surgery! You know, those dreaded leg raises and hold, hold, hold, hold. Or leg extensions and hold, hold, hold, hold. They were hard enough when I was able bodied, let alone now that one leg wants to wander all through the air and I have to focus intensely to try to even keep my feet together.
And squats. Really, what's up with the squats? 2 sets of 15 ... and I have to look after every one or two squats to make sure that my right foot/leg hasn't twisted out of alignment or position. I hated squats when I had full use of my legs and I hate them now. Too bad for me.
Lots of sit/stand repeats (oh, the things you take for granted), heel/toe one foot in front of the other balance work (yeah, I have to hold on for that one), and doing standing leg raises that made me feel very stork-like. A wobbly-need-to-hold-on stork, but good practice for the leg.
Then the stretching and flexibility. Sigh ... my hands haven't seen my toes in 30 years, and as much as I was making progress before surgery, it's all disappeared in the last six weeks. I'm sure it looked like I was just sitting there with my hands on my knees, but honest, it was pulling the backs of my knees and hamstrings like crazy.
I'll be sore tomorrow, but it will be the good kind of sore - the kind where you accomplished a workout and you muscles ask you for a bit of space to recover. The kind of workout that makes you feel better for having done it. The kind of sore that means progress.
Tuesday 12 June 2012
Steve and the Amputee
I met my new physio guy today. We're going to get along just fine, he and I.
Today was my first out-patient appointment and it was all about the assessment. I knew he would only have the referral information from the hospital, and a general overview of what is "wrong with me" so I was expecting the full, new patient assessment. Aside from a few basic questions and strength tests, most of it was focused on "functional balance". The weeble may wobble but does it fall down? Yay!!! I rock. I scored 55 out of 56. But my good leg took a beating to make that happen.
He started off with the hardest task possible - for me. Stand, unassisted, for two minutes. By the end of two minutes, every muscle in both legs was twitch, twitch, twitching. It got easier from there. He tested 14 things. Stand without assistance. Sit without assistance. Stand for 2 minutes. Stand for 1 minute with your eyes closed. Reach as far as you can, twist and look over your left shoulder, twist and look over your right shoulder. Step up and down on the stool, turn in a circle, now the other way. Stand with feet together, stand with one foot in front of the other. Stand on one foot, transfer from bench to chair with no aides. Wow... exhausted. Oh, and my 'walk test" ... how far can I walk in two mintues? 274 feet. Not even 100 metres. Let's check that again in July ...
New physio guy (I'll call him "Steve" for privacy purposes) told me he'd push me ... that I probably wouldn't like him ... that he'd make me use my bad leg ... that he'd do everything he could to help those nerves start to talk to my brain.
Oh, honey ... you haven't met me ! One thing I can guarantee ... I will do everything you ask, and it will be you telling me that I need to rest for a moment. Again, I will be the best darn physio patient you've ever had, and there is no possible way that you can push me harder than I will push myself.
BRING IT ON !!
As an aside ... this hospital specializes in both in-patient and out-patient rehab ... it's all they do. The hospital I was in for a month was filled with elderly stroke victims, but not this place. I'm not the youngest, and there is every disability you can think of. It was an eye-opener for me, especially walking behind the woman who had lost her right leg at the upper thigh/hip and was learning to use her new prosthetic. I don't know her story but she would probably trade me my problems in a heartbeat. I may not be able bodied, but I have less to complain about than a lot of people.
Today was my first out-patient appointment and it was all about the assessment. I knew he would only have the referral information from the hospital, and a general overview of what is "wrong with me" so I was expecting the full, new patient assessment. Aside from a few basic questions and strength tests, most of it was focused on "functional balance". The weeble may wobble but does it fall down? Yay!!! I rock. I scored 55 out of 56. But my good leg took a beating to make that happen.
He started off with the hardest task possible - for me. Stand, unassisted, for two minutes. By the end of two minutes, every muscle in both legs was twitch, twitch, twitching. It got easier from there. He tested 14 things. Stand without assistance. Sit without assistance. Stand for 2 minutes. Stand for 1 minute with your eyes closed. Reach as far as you can, twist and look over your left shoulder, twist and look over your right shoulder. Step up and down on the stool, turn in a circle, now the other way. Stand with feet together, stand with one foot in front of the other. Stand on one foot, transfer from bench to chair with no aides. Wow... exhausted. Oh, and my 'walk test" ... how far can I walk in two mintues? 274 feet. Not even 100 metres. Let's check that again in July ...
New physio guy (I'll call him "Steve" for privacy purposes) told me he'd push me ... that I probably wouldn't like him ... that he'd make me use my bad leg ... that he'd do everything he could to help those nerves start to talk to my brain.
Oh, honey ... you haven't met me ! One thing I can guarantee ... I will do everything you ask, and it will be you telling me that I need to rest for a moment. Again, I will be the best darn physio patient you've ever had, and there is no possible way that you can push me harder than I will push myself.
BRING IT ON !!
As an aside ... this hospital specializes in both in-patient and out-patient rehab ... it's all they do. The hospital I was in for a month was filled with elderly stroke victims, but not this place. I'm not the youngest, and there is every disability you can think of. It was an eye-opener for me, especially walking behind the woman who had lost her right leg at the upper thigh/hip and was learning to use her new prosthetic. I don't know her story but she would probably trade me my problems in a heartbeat. I may not be able bodied, but I have less to complain about than a lot of people.
Monday 11 June 2012
Forgetting the Bad Stuff
I have to thank the people who convinced me to blog or otherwise diarize my experience. Yesterday was a glum kind of day so I chose to list my accomplishements as method of cheering myself up. I also went back to the beginning of this blog and reread all of my entries ... It was a huge reminder of how far I have come.
We forget. We truly do forget the bad stuff. I had forgotten that I lay in bed for six days with compression pumps on my legs. Rereading that was shocking ... I mean, I lay in bed for six days. Wow. I couldn't stand up on my own. I had forgotten the truly enormous effort of attempting to be vertical. I needed help doing everything, even moving from the bed to a chair.
It gave me the warm and fuzzies to realize that I am actually making progress ... I'm not stuck in an endless cycle of nothingness. Even in the short time that I have been home, if I think carefully, I can find progress in the small things.
I can:
carry a cup of coffee from the kitchen to the livingroom couch
- by far the most important accomplishment
stand up and sit down, carefully, without aides
- which sends people around me into a tizzy of don't fall !!!
make dinner, slowly and in steps with rests
- but no bbq's ... playing with fire is still a bad idea
clean the kitchen (see "make dinner" - I'm still no whirling dervish of cleaning)
- oh yay, that's just the skill you want to get back
go out in public
- the looks from people amuse me, so I am guilty of playing the crippled card sometimes
go up and down stairs by myself, with a cane
- a little freaky on stone steps, but I'm getting used to it
These are things I took for granted on May 1st, but things I would have given anything to be able to do on May 3rd.
We forget. We truly do forget the bad stuff. I had forgotten that I lay in bed for six days with compression pumps on my legs. Rereading that was shocking ... I mean, I lay in bed for six days. Wow. I couldn't stand up on my own. I had forgotten the truly enormous effort of attempting to be vertical. I needed help doing everything, even moving from the bed to a chair.
It gave me the warm and fuzzies to realize that I am actually making progress ... I'm not stuck in an endless cycle of nothingness. Even in the short time that I have been home, if I think carefully, I can find progress in the small things.
I can:
carry a cup of coffee from the kitchen to the livingroom couch
- by far the most important accomplishment
stand up and sit down, carefully, without aides
- which sends people around me into a tizzy of don't fall !!!
make dinner, slowly and in steps with rests
- but no bbq's ... playing with fire is still a bad idea
clean the kitchen (see "make dinner" - I'm still no whirling dervish of cleaning)
- oh yay, that's just the skill you want to get back
go out in public
- the looks from people amuse me, so I am guilty of playing the crippled card sometimes
go up and down stairs by myself, with a cane
- a little freaky on stone steps, but I'm getting used to it
These are things I took for granted on May 1st, but things I would have given anything to be able to do on May 3rd.
Sunday 10 June 2012
Is Existentialistic a Word?
This is not how I imagined the summer of 2012. We were supposed to have a fabulous summer - kids will be away either at camp or working, and we had planned a two week vacation - a week in Rio de Janeiro and a week in Machu Picchu to walk the Inca trail. Yeah.
Instead I sit here drafting an existentialistic blog post about the most dramatic (traumatic?) six weeks of my life so far, and how it has changed me. I reflect on the great contributions that some people make to society (my neurosurgeon, the front line medical professionals), and the totally self absorbed lives of others (mine). I consider what I was doing with my life before this diagnosis (working) and whether or not and to what degree it will change me.
This experience has shown me that I have surrounded myself with fabulous friends and family who have empathy and awareness for others. It has taught me to slow down and look around, enjoy some of the moment - that it really doesn't matter whether you do that next task now or in half an hour. I've discovered that the small accomplishments keep you going towards the bigger things.
I wonder how many of the things in my life leading up to now, prepared me for now. Did I run so many marathons because it took that many to teach me to push, hard, through the last 10k; to learn that tired is a mental game, not a physical condition. To teach me that you don't always recognize progress during the training ... it isn't until you retrospectively look back and realize that that 20 miler felt easier than the one four weeks ago.
I don't believe that our lives are predetermined, but that the big and small decisions we make every day have a profound influence on where we go and how our lives are lived. We get to blame our parents for our first 18 years :) but after that, we own our decisions. We have to start each sentence with "I chose to ... " Even when we say we had no choice, there were always options, just some more tolerable to us than others.
“There is something infantile in the presumption that somebody else has a responsibility to give your life meaning and point… The truly adult view, by contrast, is that our life is as meaningful, as full and as wonderful as we choose to make it.” - Richard Dawkins
I didn't choose to grow a tumour - I do get to blame my body for that - but I have chosen every step since that diagnosis. I chose surgery because the other options were intolerable to me. I choose to spend most days working towards recovery (and some days I choose to wallow) because the options are intolerable to me. I believe I will walk because of the choices I made (and continue to make). But I think there are times when there is something, someone, an instinct or whatever you choose to label it, trying to help us. That voice that said to me "get this pain properly diagnosed".
I choose to believe that our path is not laid out for us but that sometimes in our lives there are angels who tap us on the shoulder and whisper "listen carefully".
Pay attention when they do, and choose wisely.
Saturday 9 June 2012
Every Profession Has Its Yahoos
The Occupational Therapist (OT) was a farce. Not the profession ... the individual person who arrived on my doorstep.
When I left the hospital I was offered temporary in-home physio and a home assessment by an OT. Going on the theory that there is no such thing as too much professional help during times of crisis, I accepted both. Oy .. mistake. But at least I've heard from the OT - I haven't heard anything from the physio people. But, back to my sighing and head shaking ...
I got a call mid-week from someone advising that she had been assigned to my "case" (I have a case worker now ... that sounds ominous), and was Friday a good day to stop by, say 2:45pm. Perfect timing - post nap, pre after school Friday craziness. We're good to go.
Friday morning turned out to be busy (okay, busy by the old person definition of "having more than one thing to do") and a friend stopped by for lunch and a great visit. Her departure timed perfectly with nap time, but just as I was propping my feet up and getting my pillow settled ... phone rings ... OT, wanting to know if she can come now, and oh, she's only two blocks away. Sigh ... back out to the front porch to await my new visitor.
I can't believe I missed my nap for that visit. We spent 99% of the time on the front porch going through her paperwork answering questions that she didn't even bother to verify or observe - I could have said anything and she would have written it down. She gave me lots of brochures on energy conservation, and pamphlets on other services her organization provides (for a fee), but zip, zilch in the way of good advice.
Now, maybe that is because in the scheme of things I'm reasonably mobile and I live in a small house that's pretty accessible, or maybe it's because she didn't really want to be there (I was her last call on a gorgeous Friday afternoon). Either way. Of the 6 minutes she was in the house, the only thing she commented on was that the toilet was awfully low. No concerns that there is no handrail on the basement stairs and I can't get downstairs without one.
No, she wants to come back next week to confirm that their service installed an armrest frame around the toilet.
Like there's a hope in hell that's going to happen.
When I left the hospital I was offered temporary in-home physio and a home assessment by an OT. Going on the theory that there is no such thing as too much professional help during times of crisis, I accepted both. Oy .. mistake. But at least I've heard from the OT - I haven't heard anything from the physio people. But, back to my sighing and head shaking ...
I got a call mid-week from someone advising that she had been assigned to my "case" (I have a case worker now ... that sounds ominous), and was Friday a good day to stop by, say 2:45pm. Perfect timing - post nap, pre after school Friday craziness. We're good to go.
Friday morning turned out to be busy (okay, busy by the old person definition of "having more than one thing to do") and a friend stopped by for lunch and a great visit. Her departure timed perfectly with nap time, but just as I was propping my feet up and getting my pillow settled ... phone rings ... OT, wanting to know if she can come now, and oh, she's only two blocks away. Sigh ... back out to the front porch to await my new visitor.
I can't believe I missed my nap for that visit. We spent 99% of the time on the front porch going through her paperwork answering questions that she didn't even bother to verify or observe - I could have said anything and she would have written it down. She gave me lots of brochures on energy conservation, and pamphlets on other services her organization provides (for a fee), but zip, zilch in the way of good advice.
Now, maybe that is because in the scheme of things I'm reasonably mobile and I live in a small house that's pretty accessible, or maybe it's because she didn't really want to be there (I was her last call on a gorgeous Friday afternoon). Either way. Of the 6 minutes she was in the house, the only thing she commented on was that the toilet was awfully low. No concerns that there is no handrail on the basement stairs and I can't get downstairs without one.
No, she wants to come back next week to confirm that their service installed an armrest frame around the toilet.
Like there's a hope in hell that's going to happen.
Friday 8 June 2012
I Escaped !
It was a mini adventure into the real world, and a lesson that I can't go out alone for a long time, but I got out! To the grocery store.
It has been years since I've been grocery shopping with my mother, and we are compatible shoppers - both a little bit Type A, grocery lists organized by layout of the store - no, not so totally neurotic that it is aisle by aisle - and we give things to the cashier in order of heavy to light and durable to squishable. There wasn't much I needed, and really it was an excuse to get out and do an errand, see how my energy levels lasted, and to see how my rolly Lexus coped in the world.
The grocery store was fine. I haven't figure out yet, exactly, how one would push a cart AND use a walker at the same time, so that will have to wait until I have full-on energy to be able to use canes and cart for support for 45 minutes. But it was a lesson in understanding that parents never stop worrying about their children. I love my mother. She's fabulous (of course she's fabulous, I'm exactly like her :) ). Supportive, energetic, helpful, loving ... all those things.
But she's not as mean to me as she was when I was a kid.
I learned from this excursion that mean is better. The kind of mean that says "what are you looking at me for? you know how to use your walker, let's go". The kind of mean that expects you to get through the task at hand. The kind of mean that will willingly step in and help, but you have to have tried and you have to ask for it. The kind of mean that slips M&Ms into the cart because everyone needs a treat sometimes.
I survived the adventure, there is milk in the house, and a full order of groceries being delivered this morning. But a note to my kids ... I will continue to be mean to you because a fussing mom would drive you crazy.
It has been years since I've been grocery shopping with my mother, and we are compatible shoppers - both a little bit Type A, grocery lists organized by layout of the store - no, not so totally neurotic that it is aisle by aisle - and we give things to the cashier in order of heavy to light and durable to squishable. There wasn't much I needed, and really it was an excuse to get out and do an errand, see how my energy levels lasted, and to see how my rolly Lexus coped in the world.
The grocery store was fine. I haven't figure out yet, exactly, how one would push a cart AND use a walker at the same time, so that will have to wait until I have full-on energy to be able to use canes and cart for support for 45 minutes. But it was a lesson in understanding that parents never stop worrying about their children. I love my mother. She's fabulous (of course she's fabulous, I'm exactly like her :) ). Supportive, energetic, helpful, loving ... all those things.
But she's not as mean to me as she was when I was a kid.
I learned from this excursion that mean is better. The kind of mean that says "what are you looking at me for? you know how to use your walker, let's go". The kind of mean that expects you to get through the task at hand. The kind of mean that will willingly step in and help, but you have to have tried and you have to ask for it. The kind of mean that slips M&Ms into the cart because everyone needs a treat sometimes.
I survived the adventure, there is milk in the house, and a full order of groceries being delivered this morning. But a note to my kids ... I will continue to be mean to you because a fussing mom would drive you crazy.
Wednesday 6 June 2012
Now I Need the Shrink
One thing our medical system misses is the psychological effect that a new disability has on a person. They do their best to get you patched up, healed up, and physically moving again, but no one prepares you for the mental games that are going to unfold. I'm into the ugly days - the epic battle between mind and body, what is going to change first ... body or mind?
I'm one of the lucky ones. I have the luxury of believing that my surgery was a choice, that the damage done was done for the greater good, that the disability has a good chance of being resolved over time. Not many in my situation can say that. But the attitude v disability games have begun.
At home I'm not busy enough. I don't have the hospital distractions to annoy me, the scheduled meals or physio, and the steady stream of people to interact with. It's just me and those tasked with babysitting me. I'm not doing myself any favours by sitting around mindlessly doing nothing except getting up and walking once an hour. I know that. I say I'm going to do something that day, but the seemlingly herculean effort to make it happen doesn't always come through.
The novelty has worn off and I'm just tired of this new version of me... If I could escape this body for a day, I would give almost anything to do it. I'm tired of the aches, the pains, the discomfort and I'm tired of being tired.
And I knew this was coming. I have the luxury of having the resources to be able to research the impact of disability on the psyche, the ability to fully navigate our medical system, the smarts to get help when I need it, and I even know someone who has "been there done that" and is able to answer every question I have, give solid advice and predict what's coming next.
But it still sucks.
I will either heal or adapt or some degree of both, but today I want to be the old vivacious me who could do anything. That's not the hand that I was dealt and there is nothing to be done to change that. In the choice between moving on or the sleepiness of the depressed, I choose the family motto - "suck it up and get on with it". (I come from a long line of "yeah, it's hard work, so what" people, and I will not be the first to cave). But I've entered the time when it's hard, when I'm snippy, bitchy and ready to take anyone's head off. The times when it is hard to be around me because you can never be me or understand my life. When I know I need to adapt to my new reality, but I'm still fighting it. When you can escape me, but I can't.
I was as prepared for these times as I could be, but it's going to be a bumpy ride. As much as I am aware of how good I have it compared to some, and compared to what would have happened without surgery, this battle of the old Sarah versus the new Sarah is inevitable.
Now if they'd only send a shrink instead of a personal care worker ...
I'm one of the lucky ones. I have the luxury of believing that my surgery was a choice, that the damage done was done for the greater good, that the disability has a good chance of being resolved over time. Not many in my situation can say that. But the attitude v disability games have begun.
At home I'm not busy enough. I don't have the hospital distractions to annoy me, the scheduled meals or physio, and the steady stream of people to interact with. It's just me and those tasked with babysitting me. I'm not doing myself any favours by sitting around mindlessly doing nothing except getting up and walking once an hour. I know that. I say I'm going to do something that day, but the seemlingly herculean effort to make it happen doesn't always come through.
The novelty has worn off and I'm just tired of this new version of me... If I could escape this body for a day, I would give almost anything to do it. I'm tired of the aches, the pains, the discomfort and I'm tired of being tired.
And I knew this was coming. I have the luxury of having the resources to be able to research the impact of disability on the psyche, the ability to fully navigate our medical system, the smarts to get help when I need it, and I even know someone who has "been there done that" and is able to answer every question I have, give solid advice and predict what's coming next.
But it still sucks.
I will either heal or adapt or some degree of both, but today I want to be the old vivacious me who could do anything. That's not the hand that I was dealt and there is nothing to be done to change that. In the choice between moving on or the sleepiness of the depressed, I choose the family motto - "suck it up and get on with it". (I come from a long line of "yeah, it's hard work, so what" people, and I will not be the first to cave). But I've entered the time when it's hard, when I'm snippy, bitchy and ready to take anyone's head off. The times when it is hard to be around me because you can never be me or understand my life. When I know I need to adapt to my new reality, but I'm still fighting it. When you can escape me, but I can't.
I was as prepared for these times as I could be, but it's going to be a bumpy ride. As much as I am aware of how good I have it compared to some, and compared to what would have happened without surgery, this battle of the old Sarah versus the new Sarah is inevitable.
Now if they'd only send a shrink instead of a personal care worker ...
Tuesday 5 June 2012
I Didn't Get Myself Killed
Yesterday I missed Maury, and Dr. Phil was a lousy episode (he's really starting to veer down the Maury path ... I guess all the "serious" issues have been explored over the past 10 years). But, I was successful at doing some self physio which helped keeps my legs from seizing up. The cleaning lady came back for the first time in a long time, and apparently I was so zonked that I napped on the couch while they cleaned around me. How is that possible!
But I think my biggest accomplishment is that I'm off the narcotics! Extra strength Tylenol seems to be doing the trick and my brain is much more alert. The only problem is getting to the bathroom fast enough as the codeine works its way out of my system and all that which has been plugged becomes unplugged. (How's that for TMI). It truly is the small things in life that make your day to day tolerable or miserable.
I also survived my first dinner out. Nothing fancy, just the local watering hole. We were fortunate to get a close parking spot and I managed to avoid getting killed in the parking lot. Right ... can't look for cars while I'm looking at my feet making sure that one foot is actually in front of the other - a spotter is required! No crossing streets without someone to hold my hand :) Sitting in an uncomfortable chair (that never used to bother me) made my body achy and my legs numb within half an hour, but I stuck it out until the bill was paid.
We were home before 8pm, but it was straight to bed and I was asleep before I could turn the lights out. Apparently an hour and a half in the real world requires ten hours sleep to recover.
But I think my biggest accomplishment is that I'm off the narcotics! Extra strength Tylenol seems to be doing the trick and my brain is much more alert. The only problem is getting to the bathroom fast enough as the codeine works its way out of my system and all that which has been plugged becomes unplugged. (How's that for TMI). It truly is the small things in life that make your day to day tolerable or miserable.
I also survived my first dinner out. Nothing fancy, just the local watering hole. We were fortunate to get a close parking spot and I managed to avoid getting killed in the parking lot. Right ... can't look for cars while I'm looking at my feet making sure that one foot is actually in front of the other - a spotter is required! No crossing streets without someone to hold my hand :) Sitting in an uncomfortable chair (that never used to bother me) made my body achy and my legs numb within half an hour, but I stuck it out until the bill was paid.
We were home before 8pm, but it was straight to bed and I was asleep before I could turn the lights out. Apparently an hour and a half in the real world requires ten hours sleep to recover.
Monday 4 June 2012
Patience is Not My Strong Suit
I have had several people tell me that over the last day or two. I'd argue the point, but I think they're probably right :)
I have hit the inevitable first plateau and it does not sit well with my personality. It came too early. I want to be able to "ambulate" more than 300 metres without having to take a nap right away. I want to go outside on my own (without that voice in my head saying "this is a really stupid idea" that stops me from doing it). I want to be off the prescription pain killers so I don't feel so dopey. I want to be able to feel my stupid leg !
Today is another rant day ... it's still early in the morning and I've caught myself ranting to three people already. Oops. But I'm going on the theory that I'm allowed the odd day - as long as it doesn't turn into days or week(s).
So ... today is a good day to force myself to do some self-induced-physio, to have an afternoon nap, and hope that Maury has a good "who's your baby's daddy" show or Dr Phil is dealing with some psycho teenager, so I know my life is actually pretty darned good :)
Maybe daytime tv, and the guys outside my front door fixing the sewers, might take my mind off my woes.
I have hit the inevitable first plateau and it does not sit well with my personality. It came too early. I want to be able to "ambulate" more than 300 metres without having to take a nap right away. I want to go outside on my own (without that voice in my head saying "this is a really stupid idea" that stops me from doing it). I want to be off the prescription pain killers so I don't feel so dopey. I want to be able to feel my stupid leg !
Today is another rant day ... it's still early in the morning and I've caught myself ranting to three people already. Oops. But I'm going on the theory that I'm allowed the odd day - as long as it doesn't turn into days or week(s).
So ... today is a good day to force myself to do some self-induced-physio, to have an afternoon nap, and hope that Maury has a good "who's your baby's daddy" show or Dr Phil is dealing with some psycho teenager, so I know my life is actually pretty darned good :)
Maybe daytime tv, and the guys outside my front door fixing the sewers, might take my mind off my woes.
Sunday 3 June 2012
Lessons from the House
I am generally positive and optimistic (and overall grateful for what I didn't lose) but every now and then a rant is required. The honeymoon phase is over, the novelty has worn off, and the frustration is setting in. Normal and inevitable I would think. You can't lose major motor function and not go through a phase of grumpy irritation at the world.
Things I've learned so far ...
I'm useless after 10 minutes. Wow. I continue to be amazed at how little I am able to handle, and struggle to remain convinced that I'll get my energy back sometime in my lifetime.
I'm so grateful for the pre-surgery Sarah that focused on getting the house organized, especially the laundering of the bedding. Not so much for the ability to crawl into a clean bed, but that I don't have to be thinking about washing sheets this week!
Being away for a month means there is no food in the house. At all. Next time I would arrange for a delivery service to deliver a whack of groceries first day home.
Making it a priority to fill the painkiller prescription is important. Enough said.
Get your butt into bed when the old people do. I pushed it too late (seriously? when did 9pm become too late?) and paid the price in physical ability and mental attitude. I flopped into bed discouraged that my right leg wasn't behaving and that this rehab would never end.
Expect plateaus. Even as much as I expect plateaus, I don't actually expect them because, I am special and will be the exception to ALL the rules. Right.
I'm bored. Bored, bored, bored, bored, bored. I need a hobby ... fast. Not work, not helping out with your work. Something that I can do when I want to, but without the feeling that I have to. Crocheted lap blankets anyone? Macrame is back in fashion ... hanging plant holders? And I'm still seriously considering starched lacy doily christmas tree ornaments!When it's cool and rainy outside it's even more boring.
I'm going to have to create my own structure until out-patient rehab starts, and force myself to do something rehab-ish twice a day. 10am and 2pm.
I'd love to find those "studies" that the hospital people kept refering to. You know, their justification for kicking people out so fast. Those "studies show that people improve faster in their home environment". Right. People get bored in their home environment. People do stupid things in their home environment. People don't get motivated to do any self-rehab in their home environment, and I'm sure there is a large percentage of people who wallow in depression in their home environment. We won't even get into the scientific validity of any study that has no control group. (Without cloning, how does one, exactly, say that person A improved more at home than they did in a live-in setting.)
I eat less at home ... especially if I have to make it. Maybe I will be able to shed those hospital pounds.
I can't stand a messy house, and not having the ability to do anything about it.
End rant :)
Friday 1 June 2012
Canes, Trains and Automobiles
I couldn't find a way to work "trains" into this post, but the title just doesn't have the same effect without it.
To quote my eloquent teenaged daughter ... "who ever thought we'd be shopping together for canes !" That was her response to receiving several texts with pictures of canes I was considering. I came home from the hospital with a couple of sexy, $15, drug store model canes. Wahoo ! Not. I'm too young to be walking around with institution canes ... I need canes disguised as fashion accessories. If I have to be the gimpy gal and can't wear my designer heels, and if I have to use canes when I go back to my suit job, I want something with a little more personality. Call them vanity plates :)
There is a whole world of canes out there, just not in stores. I wasn't motivated to do an extended search for a custom canes or specialty canes store in my city - I knew that would just result in having to traipse half way around the world to get there on the chance that they had something I liked. But there is an on-line world who will deliver to your door in a couple of days. I loooove you, internet. I found a pair I like, in-stock, within the cost that my insurance company will cover, and most awesomely, their standard size is the exact size I need!
My inbox shows that my order has shipped ... yay!
This morning we went to buy a rollator - what a lousy word, surely some marketing guru could have done better than that. The best thing I did for myself was research it on-line first. I read all the "what to look for in a rollator" sites I could find, as well as investigating manufacturers and the various makes and models. Sounds like impressive google work, but really, it's not like I had anything better to do except daytime tv. Turned out to be my best-spent google time recently - I walked in already knowing what make and model I wanted. I would NOT have had the energy to deal with a sales person, a sales pitch, learning the ins and outs of rollators in the store and having to make a rational decision. Nor would I have had the energy to go back ... this was a once-and-done shopping trip.
I'm the proud owner of this hot rod ! I'm going to call it my Lexus NeXus :) Where the heck are those cup holders ! As much as I hate to say it, this really not-fashion-forward-for-the-forty-set pair of wheels has made my day so much easier. While I can handle canes, they are tiring (have I said that before?) This sexy thing gives me enough relief to do just a little bit more, and hey ... you can't beat bringing your own seat! I'm so (emphasize soooooo) not a basket person but it's easily removed should my vanity be showing when I venture outdoors.
If you had told me a year ago that I would be excited about canes and rolly walkers - for myself - I wouldn't have even bothered to tell you you were out of your mind. My look would have said it all.
To quote my eloquent teenaged daughter ... "who ever thought we'd be shopping together for canes !" That was her response to receiving several texts with pictures of canes I was considering. I came home from the hospital with a couple of sexy, $15, drug store model canes. Wahoo ! Not. I'm too young to be walking around with institution canes ... I need canes disguised as fashion accessories. If I have to be the gimpy gal and can't wear my designer heels, and if I have to use canes when I go back to my suit job, I want something with a little more personality. Call them vanity plates :)
There is a whole world of canes out there, just not in stores. I wasn't motivated to do an extended search for a custom canes or specialty canes store in my city - I knew that would just result in having to traipse half way around the world to get there on the chance that they had something I liked. But there is an on-line world who will deliver to your door in a couple of days. I loooove you, internet. I found a pair I like, in-stock, within the cost that my insurance company will cover, and most awesomely, their standard size is the exact size I need!
My inbox shows that my order has shipped ... yay!
This morning we went to buy a rollator - what a lousy word, surely some marketing guru could have done better than that. The best thing I did for myself was research it on-line first. I read all the "what to look for in a rollator" sites I could find, as well as investigating manufacturers and the various makes and models. Sounds like impressive google work, but really, it's not like I had anything better to do except daytime tv. Turned out to be my best-spent google time recently - I walked in already knowing what make and model I wanted. I would NOT have had the energy to deal with a sales person, a sales pitch, learning the ins and outs of rollators in the store and having to make a rational decision. Nor would I have had the energy to go back ... this was a once-and-done shopping trip.
If you had told me a year ago that I would be excited about canes and rolly walkers - for myself - I wouldn't have even bothered to tell you you were out of your mind. My look would have said it all.
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